In our line of work, we encounter many families who are not properly prepared for when their loved ones get discharged from the hospital. It makes sense – while in the hospital, it’s difficult to think about the future. You’re in a highly tense, emotional situation – and you’re trying to balance being there for your loved one with the rest of your life, outside of the hospital. Maybe your children need to be picked up from school between surgeries, or you’re trying to get work done from a laptop on the weak waiting room WIFI.   

For this very reason, we hope that the team of doctors, nurses, or even social workers will be there to talk us through the “after.” Many families expect that a doctor will prepare the family for all they need to know – from when they can expect a discharge to where medications will be sent for pick up to the type of care your loved one needs in the coming weeks – but the reality is, most hospital officials and even social workers will not provide this information unless you ask.

Remember, hospitals are busy places, and staff are balancing a number of different patients with different needs. So, they might not always be on top of speaking with families about what they should expect.

That’s why it’s so essential that you take the time to ask – and even arrange a meeting with your loved one’s medical and social work team. Too many times, we’ve witnessed families who are completely thrown off by a discharge and left to figure it out themselves unfortunately. We’ve had families who’s loved ones were discharged with no notice – and couldn’t find rides home from the hospital. We’ve known seniors who are discharged but still need overnight care and have no one to provide it because of lack of information and communication.

We’ve had seniors who are discharged and don’t know when or where to pick up their prescriptions. We’ve even had seniors who don’t take their prescriptions because they simply do not know about them, and the family was not properly informed.  And we’ve had seniors who are discharged to nursing homes – with little to no idea what that will entail.

Discharge affects seniors and family members. If a senior needs to be released into the care of someone else – the family needs to be prepared for what to expect – from whether they’ll need to take a day off work to pick their loved one up from the hospital to any changes or adaptations they need to make to their home to make it safer for their loved one.

When your loved one is discharged, you want to be able to focus entirely on them – making sure they are comfortable, content, and have everything they need. If you’re scrambling to find a ride to pick them up and a place for them to go, you don’t get a chance to focus on what really matters.

On today’s episode of All Home Care Matters, we’ll talk about exactly how you can prepare for your loved one’s discharge from the hospital – so you won’t be left confused and rushing about when it’s time for your loved one to come home. 

Too often, families are caught by surprise when a family member is officially discharged. A family caregiver might be at work and unable to pick their loved one up from the hospital or could even be out of town and unable to get to the hospital at all that day. You need time to prepare for your loved one’s discharge – so you can make sure you’re ready to pick them up (or have a ride arranged) well in advance.

The golden rule to hospital discharge is to ask a lot of questions – as many as you can think of. You can never have too much information when it comes to preparing for this tough transition, so start making a list of questions as soon as your loved one arrives in the hospital. We’ll go into more detail about specific questions to keep in mind during this episode.

According to a study published in the National Library of Medicine, adults over the age of 65 are “the largest consumer group of hospital care.” The study focused on whether or not seniors were prepared for their transfer from the hospital back to their home. Perhaps shockingly, 39% of those studied said they were given less than 24 hours’ notice before discharge. That lack of notice leaves many seniors lost when it comes to finding a ride home – or even knowing what to expect when they get there.

With that in mind, make sure to speak with your loved one’s doctor, social worker, and nurse about when they believe a discharge could take place. They may not be able to provide an exact estimate – but they should be able to give you a ballpark that will help you plan accordingly. For instance, if they say, “he should be ready to go next week,” then you know it’s time to make arrangements.

Again, we can’t expect doctors or nurses to offer this information on their own – we must ask. When we do, they’ll be glad to provide an estimate. Not to mention, asking about when a discharge might take place is a great way to start a longer conversation with your loved one’s team about what to expect post-hospital.

Remember – one of your biggest jobs as a family caregiver is to be your loved one’s advocate. Being an advocate means having these conversations in advance, so you AND your loved one aren’t left behind. After you receive an estimate about when your loved one might be released, it’s time to open a conversation about other important logistical details. Arrange a meeting with your loved one’s team, where you can have the opportunity to ask questions and get answers. The family should be invited and involved in a discharge meeting that includes the family, doctors, and healthcare team that has been part of your loved ones care while in the hospital, but sadly those do not always take place.

In preparation for the meeting, compile a list of important questions to discuss. These can include anything from which pharmacy the prescriptions will be sent to, to where your loved one should be getting care during recovery (are they able to stay at home and live independently, do they need a nursing home, or do they need full time home care?)

When it comes to prescriptions, make a list of your loved one’s medications and review them with the doctor or nurse – how should the drugs be administered and when? Make sure any newly prescribed medications will work with the medications your loved one is already taking – don’t assume that your doctor knows every medication they’re taking. Double check just in case they don’t. Ask about vitamins and supplements, too. Are there any that can help? Are there any that should be avoided?

Try to make sure the doctor sends the prescriptions to the same pharmacy for pick up – and, if possible, see if there’s a pharmacy at the hospital. That will be the easiest place to stop for any family – and picking up the prescriptions will feel less like a dreaded errand. 

In addition to medications, find out if your loved one should be using any Durable Medical Equipment, or DMEs, once they’re home. DMEs include bedside commodes, urinals, wheelchairs, hospital beds, walkers, etc. If so, find out where you can find such items (and if the hospital can provide them), and how they should be used. Are these things your loved one will need assistance with? Can the family provide such assistance, or will it be necessary to hire a registered nurse or a home care company to help? If your loved one needs a nurse, it might be necessary to consider alternative living options, like a nursing home.

In addition to DMEs, find out if your loved one should use bandages, gauze, creams or any other specialized medical supplies. Have a nurse walk you through exactly how to change bandages – and practice a few times under her supervision – so you know exactly what to expect.

Find out, also, whether or not your loved one needs to follow a specialized diet or if there are foods or beverages he should avoid. Often times, seniors will have dietary or fluid restrictions following surgeries or because of certain medications. If your loved one will require an extensive change to their diet, find out if there are a collection of recommended recipes that you can try.

After you find out what your loved one will need, you can follow up with the heavier questions. Find out what you should look for in the first days and weeks after discharge. Are there any abnormalities that may be red flags? This could be anything from bad headaches to a lack of bowel movements. If you do notice any of these abnormalities, how should you respond? Do you need to take your loved one to the ER, or will a call to the doctor suffice?

These abnormalities will vary depending on what your loved one was hospitalized for. Post-op patients will have a separate set of warning flags than those suffering from an infection – so make sure that you ask your doctor specific questions, and don’t rely on internet research or generalizations.

Next, make sure you know what to expect in regard to follow up appointments. Should you be scheduling a follow-up with the family doctor – if so, when? Will it be up to the family to schedule that appointment, or will the doctor give them a call to schedule it?

In some cases, a person will need to see a new doctor – usually a specialist in whatever they are experiencing or else a geriatric doctor. If this is the case, get a list of recommended doctors and find out who will be making the appointment.

Finally, you need to find out exactly what their care will look like from here on out. Depending on the situation, your loved one may need to start physical or occupational therapy. If so, ask your loved one’s doctor for a list of recommended therapists and try to get a feel for how long the therapy will last – so you can be prepared for how much of your week will be spent driving your loved one to their appointments.

Families should also ask about Home Health Care – which Medicare does pay for as long as there is a need for it. If the doctor feels that Home Health Care will improve the life of their patient, they will write a note making your loved one eligible for it. Home Health Care can be enormously helpful when it comes to seniors who need a little extra assistance but are still relatively independent. They do not assist with activities of daily living – like personal hygiene, feeding, dressing, or managing continence. However, you can hire home care helpers to assist with those needs at the same time.

Home Health Care comes about 1 to 3 times a week, and it only lasts as much as nine weeks. It can be shorter if your loved one’s needs don’t require as much care – but if your loved one requires more long-term care, you may need to consider other options.

Finally, if it is recommended that your loved one is transferred straight from the hospital to a nursing home, make sure that you have all the information you need in preparation. Speak to your loved one about what their own wishes are, too.

While a nursing home might be recommended, if your loved one would rather stay at home – especially during COVID when nursing homes might restrict visitation – see if there’s a way to make that work. This is especially important for dementia patients, who benefit enormously from being in familiar surroundings. If your loved one adamantly does not want to live in a nursing home – think about family caregiving or hiring professional home care services as an alternative. To learn more about those options, listen to our episodes on choosing the right care and our episode on what is home care?

In many cases, we have seen patients who are only allowed to be discharged to nursing homes – simply because the patient cannot be home alone and they did not have a family caregiver or knew that having a home care company was an option. This is another reason it’s so important to find out when discharge will be happening ahead of time – so your care plan can be in place.

Now, there can be circumstances in which a patient must be admitted into a nursing home. They might need more extensive medical care that simply cannot happen at home. Still, if this isn’t the case, we recommend looking into home care. If your loved one has dementia, especially, familiar surroundings are incredibly important, so all alternatives should be considered. We have met many families who simply did not know they had other options.

While we might assume that hospital discharge is the least of our worries (especially after a stressful hospital visit, where you just want your loved one to come home) many are shocked to see just how difficult the discharge process can be. The better prepared you are, the better. Remember – the golden rule to hospital discharge is to ask as many questions as you can think of – you can never be too prepared for what comes next.

We want to thank you for joining us here at All Home Care Matters, All Home Care Matters is here for you and to help families as they navigate long-term care issues. Please visit us at allhomecarematters.com there is a private secure fillable form there where you can give us feedback, show ideas, or if you have questions. Every form is read and responded to. If you know someone is who could benefit from this episode, please share it with them.

Remember, you can listen to the show on any of your favorite podcast streaming platforms and watch the show on our YouTube channel and make sure to hit that subscribe button, so you'll never miss an episode. Please join us next time as we discuss Early Onset Alzheimer’s.

Sources:

https://www.caringseniorservice.com/blog/preparing-for-a-hospital-discharge-plan-for-success

https://pubmed.ncbi.nlm.nih.gov/3389244/

https://seniorsathome.jfcs.org/hospital-discharge-checklist/

If you’ve been diagnosed with glaucoma, you might be feeling daunted and a little bit scared. It’s not an easy diagnosis to come to terms with – after all, if not treated it is possible to lose your vision entirely. However, with the proper treatment and preparation, you can live a perfectly normal life even after diagnosis – and preserve your vision.

Believe it or not, an early glaucoma diagnosis actually puts you at an advantage compared to those experiencing glaucoma without a diagnosis. A diagnosis means that a treatment plan can begin right away – and while there is not yet a cure for the disease, treatment can keep you from becoming blind.

If glaucoma is something you’re coming to terms with, it’s important to remember you’re not alone. According to glaucoma.com, over 3 million Americans are estimated to have the disease, and, because early symptoms are often non-existent, only about half of those know it. It is estimated that there are about 60 million people living with glaucoma worldwide.

Glaucoma is the second leading cause of the blindness in the world – and while anyone of any age can get glaucoma, it is most common in people over the age of 60. More than 120,000 US citizens are blind from glaucoma – usually because they did not receive a diagnosis until much of their vision was already lost.

While anyone can get glaucoma, African Americans are especially susceptible, from a younger age. African Americans are 6-8 times more likely to go fully blind, and 15 times more likely to become visually impaired. To put this into perspective, open-angle glaucoma accounts for 19% of blindness among African Americans, whereas it only accounts for 6% of blindness among Caucasians. Asian and Hispanic people are also at a higher risk of glaucoma than Caucasians.

Other people at high risk are those who have a relative with glaucoma, those who are extremely near or far sighted, people who have high eye pressure, an eye injury, or use steroids. 

Clearly, Glaucoma affects a significant number of people every year – so whether or not you’ve been diagnosed, it’s important to understand what the disease and how to detect it – even without symptoms.

On today’s episode of All Home Care Matters, we’ll go into exactly what glaucoma is and how it affects vision. We’ll talk about the different types of glaucoma and how they are diagnosed. Then, we’ll go over symptoms, treatment, and what life might look like after diagnosis. By the end of this episode, listeners should have a good understanding of the disease – including what to expect and what treatment plans to follow.

So, what is glaucoma? It’s an eye disease that can lead to blindness without treatment, or if diagnosed too late. To understand exactly how glaucoma works, let’s talk about the eye itself.

Millions of nerve fibers exist in each of our eyes that run from the retina to the optic disc and onward through the optic nerve. The retina is in the back of our eyes, and its job is to take light and turn it into electrical signals. The signals then travel through the optic nerve into the brain – where the brain processes visual information. This is how we see.

When a person has glaucoma, the fibers do not travel up the optic nerve, but become clogged at the optic disc. Without traveling up the optic nerve, the signals become blogged and do not reach the brain. At the same time, the eye’s drainage system cannot function due to the clog – so the fluids in our eyes that are normally drained out through our pupil build up and do not drain. The build-up of fluid leads to pressure inside the eye, which can damage the nerve fibers, leading to loss of vision.

Glaucoma occurs in both eyes for most people, but it tends to begin in one eye before gradually affecting the other. Usually, people experience blindness of their peripheral, or side vision, first – and it can be so slight that some might not even notice. Many patients will subconsciously turn their head to see to the side, and not even realize that their peripheral vision is not functioning properly. Without treatment, central vision will eventually be lost, too. Early detection, though, can mean preventing total or even partial loss.

While a build-up of pressure is certainly a leading cause of glaucoma, it is not the only cause. We know this because some people with glaucoma have perfectly normal pressure ranges within their eyes. Researchers are still working to find out the other causes of the disease.

There are about ten different types of glaucoma, but the two most common are open-angle glaucoma and angle-closure glaucoma. Primary open-angle glaucoma is by far the most common, as it accounts for about 90% of all cases – that’s about 2.7 million Americans, usually over the age of 40.

Open-angle glaucoma occurs when the angle where your iris, or the colored part of your eye, meets the cornea, or the clear part of your eye, opens how it should, but a clog of fluids prevents drainage from occurring properly.

The lack of drainage and increase of fluids raises the pressure in the eye until it damages the optic nerve, keeping light signals from reaching the brain and causing vision loss. Think of it as a clogged pipe in a sink, that keeps the liquid from draining.

Open-angle glaucoma is a slowly developing disease that has no early warning signs. That’s why so many people do not realize they have the disease until they are already going blind. However, if open-angle glaucoma is detected early enough, it can be treated. This type of glaucoma can be detected in eye exams even before loss of vision occurs – so make sure to get your eyes checked at least every two years as a precaution.

Angle-closure glaucoma, sometimes called narrow-angle glaucoma, is the second leading type of the disease. About 16 million people worldwide suffer from angle-closure glaucoma, according to Glaucoma Today.

In angle-closure glaucoma, the angle where the iris meets the cornea fails to open. This closed angle causes the drainage of fluids to become blocked and eye pressure is increased, leading to optic nerve damage and, eventually, vision loss. Like open-angle glaucoma, this is a slow moving disease without early symptoms.

In the early stages of angle-closure glaucoma, the angle might not be fully closed, and the optic nerve can still function properly. That’s why, if found early, treatment can be affective.

There is a form of this type of glaucoma that is especially dangerous and requires immediate medical attention. That’s acute angle-closure glaucoma, in which the pressure in the eye rises quickly, causing pain in the eye, blurry vision, redness, colorful halos, and nausea or vomiting. This can cause severe vision damage. If you or a loved one is experiencing these symptoms, get to a doctor right away.

There are eight other, rarer, types of glaucoma that are mostly variations of open-angle or angle-closure glaucoma. These include normal-tension glaucoma, secondary glaucoma, pigmentary glaucoma, congenital glaucoma, exfoliative glaucoma, neovascular glaucoma, uveitic glaucoma, and traumatic glaucoma.

Normal-tension glaucoma occurs when the optic nerve is damaged even though there is not a pressure build-up in the eye. It affects Japanese people at a higher rate than any other groups, as well as people with migraines, irregular heart rhythm, and low blood pressure. Researchers are still attempting to find out why glaucoma happens without increased pressure.

Secondary glaucoma happens when a person has a concrete cause of their glaucoma – this could mean eye injury, inflammation, or a negative response to medication. Treatment for secondary glaucoma will vary depending on whether the angle where the iris meets the cornea is open or closed.

Pigmentary glaucoma occurs when pigment granules in the iris become trapped in the drainage system. This is considered a type of open-angle glaucoma. The trapped pigments can lead to a clog in the system, preventing fibers from traveling up the optic nerve and sending signals to the brain. Pigmentary glaucoma mostly effects Caucasian males who are significantly near-sighted.

Congenital glaucoma happens to babies at birth. It affects about 1 in 10,000 babies each year. It happens when the eye’s drainage system does not fully develop or develops incorrectly before birth. Babies with congenital glaucoma might have large eyes, cloudy corneas, and suffer from light sensitivity. This is often an inherited form of the disease.

Exfoliative glaucoma happens when flaky pieces of the outer layer of the eye peel off and gather in the angle where the cornea and iris meet. This will clog the drainage system and raise eye pressure. People with exfoliative glaucoma will experience higher pressures than people with other types of the disease. It is most common in people from Russia, India, and the Mediterranean.

Neovascular glaucoma happens when new blood vessels form abnormally over the eye’s drainage cells. The blood vessels block the fluid from draining and eye pressure increases, causing the optic nerve to become damaged. People with diabetes are more likely to have this type of glaucoma.

Uveitic glaucoma is a result of uveitis, which happens when the iris is inflamed. The inflammation blocks drainage and damages the optic nerve. Sometimes, people with uveitis respond poorly to the steroids used to calm the inflammation, and the optic nerve is damaged.

Traumatic glaucoma occurs when a person suffers an eye injury – usually blunt injuries that bruise the eye or injuries that penetrate the eye. This type of glaucoma might happen immediately after injury – but it can develop years later.

Even though glaucoma does not have many symptoms, doctors can diagnose the disease by measuring the pressure in the eye, examining the shape and color of the optic nerve, testing a person’s field of vision, examining the angle where the iris meets the cornea, and measuring the thickness of the cornea. These tests can discover glaucoma long before a person experiences symptom – so it’s essential to get your eyes checked at least twice a year, so you can get a diagnosis in time to start treatment.

Vision changes happen for most people around the age of 40, so at this age it’s especially important to book regular appointments with your eye doctor. There, your doctor will let you know how often you should come back. If you have diabetes, blood pressure issues, or glaucoma in your family, they will likely recommend you come in more often.

Now, in some of the rarer types of glaucoma a person might experience actual symptoms. These might include eye pain, headaches, nausea or vomiting, sudden sight loss, hazy vision, or seeing rainbow-colored circles – particularly around bright lights. If you are experiencing any of these symptoms, make sure to book an appointment with an eye doctor as soon as possible.

If you’ve been diagnosed with glaucoma, there are treatments that can keep you living a normal life and prevent you from suffering extreme vision loss. This is especially true if your glaucoma is diagnosed early enough, before vision loss begins to occur.

Doctors treat glaucoma by lowering the pressure in the eye through a variety of methods. These might include medications, incisional surgery, laser surgery, or all three. Treatment will vary depending on the individual case.

While there is no cure for glaucoma, treatment is usually successful for most patients when implemented early enough. Incisional surgery, for instance, has a success rate of 70-90%, according to glaucoma.com. While the treatments might sound a bit frightening (no one likes getting surgery) they are often the only way to prevent vision loss.

Now, that said, a glaucoma diagnosis does not necessarily guarantee that you will go blind. Total blindness only occurs in about 5% of patients, but some populations, like African Americans, are more likely to suffer from total blindness than others. Significant vision loss, while not total blindness, occurs in about 10% of patients, especially if they do not receive treatment.

Speak to your doctor about the best treatment plan for you, so you can combat glaucoma before you suffer any vision impairment. Your doctor will have a plan for you to follow so you can manage the disease in the best way for you.

People with glaucoma can continue to live a high quality of life, as long as they are getting treatment. Patients will meet with doctors periodically and take eye medications daily. If vision impairment has occurred, driving might be affected – along with some activities like playing sports. You also might feel especially sensitive to light. Still, you should be able to live life pretty much as usual. If you are feeling sensitive to light, you can get tinted glasses to help.

Most glaucoma patients will visit with their doctors about once a week or a month at the beginning of treatment, but over time your visits will shift to a few times a year. Your doctor will be able to help you find the plan that works best for you.

Glaucoma can feel like a daunting diagnosis – but with early detection, regular doctor appointments, and proper treatment, it can be a manageable disease that does not result in significant loss of vision.

If you or your loved one has been diagnosed with the disease, make sure treatment begins right away – so you can keep doing what you love, for as long as you want to.

We want to thank you for joining us here at All Home Care Matters, All Home Care Matters is here for you and to help families as they navigate long-term care issues. Please visit us at allhomecarematters.com there is a private secure fillable form there where you can give us feedback, show ideas, or if you have questions. Every form is read and responded to. If you know someone is who could benefit from this episode, please share it with them.

Remember, you can listen to the show on any of your favorite podcast streaming platforms and watch the show on our YouTube channel and make sure to hit that subscribe button, so you'll never miss an episode. Please join us next time as we discuss an issue that often times will get overlooked and that is preparing for your hospital discharge.

Sources:

https://www.glaucoma.org/GRF_Understanding_Glaucoma_EN.pdf

https://www.webmd.com/eye-health/understanding-glaucoma-symptoms

https://www.brightfocus.org/glaucoma/news/understanding-glaucoma

https://www.webmd.com/eye-health/glaucoma-eyes

https://www.healthcentral.com/slideshow/glaucoma-symptoms-types-treatment

https://www.mayoclinic.org/diseases-conditions/glaucoma/diagnosis-treatment/drc-20372846#:~:text=Glaucoma%20is%20treated%20by%20lowering,combination%20of%20any%20of%20these.

https://www.aao.org/eye-health/diseases/glaucoma-treatment

https://www.glaucoma.org/news/blog/new-treatment-options-for-managing-glaucoma.php

https://glaucomatoday.com/articles/2009-july-aug/GT0709_08-php

https://www.glaucoma.org/treatment/conventional-surgery.php

As our loved ones age, there are many precautions we need to take to make sure they are safe at home. Home safety risks can be easy to miss, or even forget about, when you’re dealing with a stack of other responsibilities – like making sure your Mom gets to her doctor appointment, tracking her progress, figuring out if she needs extra care – often, the last thing we think about is taking out loose carpet to prevent falls or putting a handrail in the shower.

Home safety, though, must be considered, especially as our loved ones get older and may become more forgetful. Home safety risks include everything from slipping on a wet floor to starting an accidental house fire – so they’re certainly nothing to mess with.

On today’s episode, we’ll be focusing specifically on kitchen safety. Oftentimes, the kitchen is the center of activity in a household – from cooking to eating to using the kitchen table for various projects or game nights. The kitchen poses serious risk if precautions are not taken, though, so today we’ll dive into how you can make sure your loved one’s kitchen is as safe as can be.

Today’s episode is part of a new series we’re doing on All Home Care Matters – quick tips. These shorter episodes will provide you with some fast advice for those days when you don’t have a lot of time but could use some helpful information. We hope you get a lot of out them in just a little time. Let’s get right to it.

Why is kitchen safety specifically so important? Let’s let the numbers speak for themselves. According to The National Fire Protection Association, 3 in 10 home fires begin in the kitchen – which is a higher number than any other room in the house. Further, according to the Federal Emergency Management Agency, adults over 65 have 2.7 times the risk of dying in a kitchen fire than younger people.

Fire isn’t the only worry, however. There’s also a high risk of experiencing gas poisoning (or worse) from leaving the stove on, slipping on recent spills or newly mopped tile, falling when reaching something from a high cabinet, cutting skin on sharp knives, and burning skin on a hot stovetop. As warm and welcoming as the heart of a household can be, it also comes with its dangers.

Kitchen safety precautions are especially important for dementia patients – who might forget to turn off a stove or even that they’ve put food in the oven. We always recommend that dementia patients have assistance in the kitchen – and when they’re alone, to keep the oven and stove unplugged.

Other fire-safety tips include purchasing electric tea kettles and coffee machines with automatic-turn off features. These appliances will turn off on their own – before becoming too hot – so you won’t have to worry about the coffee pot starting a fire. Remove loose dish towels that hang on or near the stove and make sure no curtains are hanging too close to the stove, either. Keep ventilation systems cleaned on a regular basis – dirty ventilation systems are one of the most common causes for kitchen fires. At the same time, make sure the smoke detectors are tested at least monthly and there’s an easy-to-operate fire extinguisher nearby.

You should also speak with your loved one about fire safety. Make sure they do not wear loose clothing when they cook and that they know to set a kitchen timer to remind them that something is on the stovetop.

When it comes to knife safety, let’s begin with the groceries. Purchase pre-cut vegetables and meat when you can, so that you eliminate the need for knives whenever possible. When a knife is needed, make sure that it’s not sharp enough to cause serious damage, but is sharp enough to get food chopped. It’s always better to have someone else do the cutting – particularly if your loved one is suffering with Parkinson’s, severe arthritis, or other problems that may cause them to tremor and slip up while cutting. Store the knives and other sharp objects in a safe place where they will not fall or be mistakenly picked up by the blade-end out of a drawer.

When it comes to fall prevention, start by putting any essential or commonly used items in low down cabinetss, drawers, and pantries. There is no reason that an older adult should be standing on a step stool every day to reach her cooking equipment. Heavy items especially should be stored down below, to eliminate a risk of dropping the item from above. In the upper cabinets, store any items that are rarely used or only used by caregivers or other family members.

Place a non-skid mat in front of the sink to prevent slipping on a wet floor and make sure that any spills are cleaned up right away. If possible, clean the kitchen for your loved one after they are asleep, so the floor is dry by the time they wake up in the morning. If they are living alone and handling the cleaning by themselves, remind them to wear non-slip shoes when mopping the floor and to avoid the kitchen altogether for a few hours afterward.

Install motion sensor lights in the kitchen so that your loved one can see when getting a glass of water at night or on a rainy day. If possible, you can even install extra lighting over the stove and oven to help your loved one see even better while they cook.

When it comes to burn prevention, make sure oven mitts are placed in an easy-to-see spot where your loved one won’t forget to use them. You can also put a note near the stove (but far enough to prevent fire risk) reminding your loved one to use an oven mitt and potholder.

Finally, make sure that all dishes used on a regular basis are unbreakable, to help avoid and prevents cuts from broken glass. Make sure the refrigerator is nice and cool, so food doesn’t spoil. Along those lines, it is common for expired food to pile up in a senior’s home if they are experiencing memory problems or mobility issues that prevent them from cleaning out the fridge. Avoid the risk of consuming expired food by checking regularly.

We hope those kitchen safety quick tips helped you understand why the kitchen is a risky place for seniors – and how you can keep it as safe as possible, so they don’t have to stop spending time in a room they love.

Every episode of All Home Care Matters has resources and information that you can find in our show notes or by visiting our website for more information. Make sure you check out the sources we used for this episode for a kitchen-safety checklist.

We want to thank you for joining us here at All Home Care Matters, All Home Care Matters is here for you and to help families as they navigate long-term care issues. Please visit us at allhomecarematters.com there is a private secure fillable form there where you can give us feedback, show ideas, or if you have questions. Every form is read and responded to. If you know someone is who could benefit from this episode, please share it with them.

Remember, you can listen to the show on any of your favorite podcast streaming platforms and watch the show on our YouTube channel and make sure to hit that subscribe button, so you'll never miss an episode. Please join us next time as discuss Understanding Glaucoma.

Sources:

https://www.fivestarseniorliving.com/blog-post/kitchen-safety-checklist-for-older-adults-and-their-family-caregivers (includes a checklist)

https://www.assistinghands.com/51/florida/miamibeach/blog/kitchen-safety-tips-for-your-senior-loved-ones/

https://www.24hrcares.com/kitchen-safety-for-seniors/

Even if you’re providing family caregiving to your loved one, there might come a time when you realize that you simply cannot handle everything all the time. Whether your parents’ needs have increased significantly, but you want to make sure they remain at home, or your career and family life have become more demanding, you might find that it’s time to hire a professional caregiver.

There are many benefits to having professional home care services. Unlike assisted living facilities and nursing homes, where a full-time staff balances your loved one’s care with a sea of others, home care staff are there for your loved one and only your loved one. That means that your loved one receives undivided attention – which can be truly invaluable.

You also get to choose when the caregiver comes and how long they stay. Having professional home care services gives you flexibility and can come just while you are at work during the day or they can stay through the night – it all depends on what your parent or grandparents’ needs are, and the level of care you are able to give.

Not only that, but having professional caregivers can help your parent maintain independence. Many seniors are more comfortable living at their own homes, especially when their care is personalized to their needs – so if your parent doesn’t need assistance with every task, they can continue to perform those tasks on their own.

At the same time, some seniors simply do not wish for their adult children to care for them. They might not feel comfortable relying on their children to bathe or dress them, or they want to be looked after by a professional. Regardless of the reason, professional home care can help a parent feel better about their care if they don’t want their adult children so intimately involved.

With professional home care, their staff will also be trained to help with tasks that might be difficult for family members with little to no experience. They are trained in providing transportation, helping with housekeeping and cooking, bathing and dressing, and other needs. This can ease some of the anxiety family caregivers might feel about tasks that seem particularly difficult or uncomfortable. They can also offer respite to family caregivers who just need a break from time to time.

Finally, professional home care services can be more cost efficient than moving seniors into a facility. According to AARP, there are more than 2.3 million US workers who provide in-home care and health care for seniors – and that number is expected to grow as the population of 65-and-older increases in the next decade.

With that many caregivers, you can rest assured that the right person for your loved one is out there. Of course, this isn’t an easy transition, and you don’t want to hire just anyone. We’ll go into detail about how to hire the ideal caregiver for your loved one, but first, keep in mind that you can always replace your caregiver if they’re not a good fit.

Many people think that they’re stuck with whoever the company sends that day – but that’s truly not the case. If the caregiver isn’t a good fit for your parent, you do have the power to find a replacement. Still, we recommend giving the relationship time to develop. Caregivers need time to adjust to your parents’ routine and your parent needs time to adjust to your caregiver – so if you want a replacement simply because the transition’s been a little bumpy, we do recommend giving it some time.

When it comes to hiring a professional home care company and their staff, make sure that you share with the Case Manager that you want someone who could be a good friend to your loved one. The relationship between caregiver and senior is extremely important for more reasons than physical care. Excellent caregivers will provide your loved one with emotional care through socialization, activities, and – most importantly – friendship. That friendship can mean the difference between a high quality of life and feelings of deep isolation. Friendship gives life meaning – it gives people hope, laughter, and security. So, remember not to underplay the importance of finding someone who can mesh well with your loved one on a personal level.

When it comes to finding the right home care company, start by assessing what your loved one can afford. Do they have long-term care insurance? Medicaid? These types of insurance do not always cover in-home care, unless a doctor confirms that it is needed or their long-term care insurance covers it. Look closely at your loved one’s plan to find out. There is a chance you will have to pay out of pocket for this service, so make sure there are savings available. If not, you might need to band family members together to help or look into volunteer services that could only provide part-time care.

Next, think about what your loved one’s needs actually are. Include your loved one in this conversation. If they are still relatively independent, it might be wise to ease them into this transition with part-time care. Ask them how much care they would like to have. What’s something that they could genuinely use help with? Housework? Cooking? Mobility? Personal Care? Then assess whether full time or part-time care would be a better option.

If you are providing family care to your loved one, then you might need to hire a caregiver to come while you’re at work or to give you a break on the weekends or evenings. In that case, you might ask the company what their rates are if they were to come 9-5 Monday through Friday, or 9-5 Saturday and Sunday.

Have your parent write down their likes and dislikes – from activities to personality traits – to help you find a perfect match. Is your parent an avid reader who loves to discuss books or is she more of a movie person? Does your parent like to spend his free time drawing or going for walks?

In addition to basic interests, consider your parents’ passions and the lives they have led so far. If your parent was an architect, for example, they might enjoy the company of a caregiver with an interest in architecture. If your parent is a musician, they would enjoy the company of someone who is passionate about music.

Next, you’ll need to decide whether to use an agency or a registry. Agencies can be a bit costlier, but their workers are insured (so you won’t have to pay for any accidents that might occur on the job), the workers have undergone background checks and are highly trained, agencies will hand pick caregivers that have experience working with people similar to your loved one, and you don’t have to worry about a ton of extra paperwork. They also will match your loved ones traits, needs, and interests with the caregiver that shares those interest to help make the connection easier. The home care provider will do what they can to match your loved one with the right fit, and you can always replace the caregiver if they don’t mesh well with your loved one.

It is not recommended to hire someone privately due to the liabilities and risks associated with it. For instance, you will also be liable for any on-the-job accidents that might occur and you’ll also need to consider what your backup plan is if that person has to quit or starts to make unreasonable requests from the family to continue their employment with them. If the family decides that hiring someone privately is the route that they are going to take then make sure to speak with an attorney about protections that they will need to prevent any liability issues that can arise from a private caregiver.

There are certain traits you can look for in a potential caregiver that should mean they will do a wonderful job. These traits include patience, reliability, flexibility, and empathy. These are key components of caregiving that will mean the difference between a fantastic caregiver and a mediocre one.  

When you do find the right home care company or if you’ve decided on choosing a private caregiver on your own, who feels like a good fit, allow for a transitionary period of at least a few weeks before you decide that the relationship isn’t working. Remember, this is a big adjustment for the caregiver and for your loved one.

Not only do they both need to get used to a new routine, but they’re also adjusting to a new person being around all the time. Many seniors are hesitant to accept a caregiver right away – they might feel their independence is being stripped away and resist, thinking they don’t need as much help as they really do. At the same time, a caregiver might struggle to know exactly what to help your loved one with. It’s important for a balance to be established – so that your loved one can still do some things on her own if she is able and the caregiver knows what to help with and what to let your loved one do for themselves.

This adjustment does take time – so it’s important to be patient. Still, there are ways to strengthen the relationship between caregivers and the person in their care, and to build trust between the two.

The bond between caregiver and senior can be quite meaningful indeed. Rebecca Bodenheimer saw this firsthand with her grandmother. She wrote of the experience on care.com: “In [my grandmother’s] last few years, she developed very close relationships with her professional in-home caregivers to such an extent that I believe these women became her most important confidantes. I noticed the relationships she formed with them were less complicated than those she had with her daughters – with her caregivers, there weren’t decades of emotional baggage getting in the way of providing her with care.”

Indeed, the senior-caregiver relationship is quite unique – which can make it all the more rewarding. Not only is the caregiver spending deeply personal quality time with the person in their care, but their relationship can be simple, happy, and fulfilling when it’s not complicated by family matters.

This bond can be quite beautiful. Many seniors find best friends in their caregivers, feeling comfortable enough to go to them on hard days and laugh with them on good ones. But how does this bond actually form? Like any solid relationship, it certainly doesn’t happen right away.

The transition can be a bit rocky, but there are ways to help the relationship grow before it’s time to consider a replacement. The first thing a caregiver should work on is establishing trust with the person in their care. Trust is arguably the hardest thing to get right in those early weeks – but once it’s established, the rest of the bond will be that much easier to form.

Start establishing trust by easing the transition. The first few times have the caregiver meet with your parent for short visits, where you or another loved one is present. Play games together to break the ice and think of talking points that might bond the two together (for instance, do they both love to paint? Start a conversation about painting, and then maybe pull out the paints for some craft time).

If possible, don’t have the caregiver begin with sensitive issues – like bathing or dressing – right away (in some cases it is necessary and cannot wait). That could make your loved one feel extra vulnerable or uncomfortable, which could make them resent the caregiver. Instead, ease into these tasks. Have the caregiver begin with housework, cleaning, and companionship. Eventually build up to the additional needs.

Have the caregiver and your loved one share a meal, tea, or a walk together in the beginning – this can be an opportunity for conversation, so your parent can have a chance to warm up to the caregiver.

Make sure that your caregiver knows how to handle problems that might arise. Speak with them about how they might respond to meltdowns, falls, or other incidents. If possible, have your loved one describe how they would like these situations to be handled. What triggers bad moods? What should a caregiver avoid that might set your parent off? The more prepared the caregiver is for these incidents the better things will be when they occur. Too often, a caregiver might respond to a problem in a manner that your loved one might not like, which could lead to tension. The better prepared you can all be, the better.

On that note, when choosing a caregiver, make sure you choose someone who is calm, patient, and empathetic. You do not want someone who will grow impatient or frustrated with your loved one. What your loved one needs more than anything else is someone to be a constant figure of safety, support, and encouragement in their life.  When using a home care company they will ask the family and their loved one the traits and characteristics that they would like in their caregiver as part of their assessment and intake.

Positive reinforcement is important all the time, but especially in the beginning. Don’t hesitate to give praise to a caregiver who is doing the right things – this is a difficult job and positive reinforcement will keep a caregiver from feeling discouraged or overly frustrated. Talk to the caregiver about praising your loved one, also. That doesn’t just mean saying “good job,” but it can also be communicated through gestures. Allowing a loved one to wash a dish if they ask to, for instance, and then not rushing them if they take a long time. This can strengthen the caregiver and senior bond because the senior feels like the caregiver trusts them to be somewhat independent.

Respect is essential – from both ends. The family should respect that the caregiver is a person with a life and family of their own. You might expect them to be available all the time, no matter what – but time off will be necessary and emergencies do happen. Have a back-up plan in place in case of cancelation and try to be respectful if your caregiver asks for a rare day off to rest or spend time with her family. When using a home care company the family would work directly with their loved ones Case Manager on any scheduling, wages, or concerns that they may need to address and the Case Manager will handle it with the caregiver.

At the same time, the caregiver should be respectful of your family and your loved one. While she is certainly an important person on an emotional level, she is also a professional employee and needs to stay on top of her work. If the caregiver is slacking on a number of duties, talking back, or treating your loved one with disrespect, this is a bad sign.

Keep communication open. Make sure that the caregiver knows exactly what is expected of her – and that your loved one knows what to expect from her. If the caregiver is told she will only be helping with housework, and then she is asked to do a myriad of other tasks, there might be a problem. At the same time, if the senior is told the caregiver is just there to help with cooking, when in reality she’s been told to assist with everything from medications to bathing, tensions and discomfort can rise fast. When everyone knows exactly what to expect of each other and themselves, things should work out much more smoothly.

Now, if after a month or two the relationship just isn’t working, it might be time to consider a replacement. Remember, replacements are always an option for families, even if you’re going through an agency – so if there are ongoing problems between your loved one and their caregiver, don’t hesitate to take that step.

There are certain warning signs that you can look out for to see if the caregiver is the right fit. This can be easier to detect on a professional level. If your caregiver has cancelled last minute more than one time or consistently arrives late, this is a big red flag. Similarly, if you notice the house isn’t being cleaned, expired food is piling up in the fridge, or other tasks are simply being neglected, it might be time to find a new caregiver. If you’re working with a home care company the Case Manager should also be staying on top of these matters to insure that they are being completed and if they are not then they will speak with the caregiver and address the issue.

Other especially alarming warning signs might be consistent missed medications and doctor appointments, a lack of patience and empathy, and continuous disrespectful behavior.

If you notice that your parent has become more withdrawn since working with their new caregiver – this might be a bad sign. Is your mother hiding in her room instead of participating in activities? Is she resistant to accept any help? This is an instance where your mother might need more time – but if it goes on for weeks or months, then she’s just not connecting with your caregiver, and it might be time to find someone new.

Listen to your parents’ complaints. Most seniors will have complaints about their caregiver no matter what – after all, this is a big adjustment that forces seniors to take down their boundaries and lose some of their independence. That’s why it’s important to hear what exactly they are complaining about. If they are upset about a dinner they didn’t like or an activity they didn’t feel like participating in, this shouldn’t be taken as a reason to find someone new. Simply talk to their caregiver about not cooking that dinner anymore and choosing a new activity.

However, if your parent is complaining that their caregiver is condescending, impatient, or cruel to them – this is not good. The caregiver must treat your loved one with kindness and warmth. If they are beating your loved one down with cold and rude behavior, it’s time for them to go.

Signs of a larger issue include unexplainable new injuries, limited access to your parent, or financial changes (for instance, is your parent loaning her caregiver large amounts of money?) To learn more about this, listen to our episode on protecting seniors from scams. These instances are rare, but they do occur, which is why that initial screening and background check is so very important.

Finding an excellent caregiver for your loved one is certainly not an easy task, but remember, it takes time and patience for meaningful bonds to form. Do what you can to help your loved one bond with their caregiver through ice breakers, empathy, and open communication. At the end of the day, you can always find a replacement if need be – but hopefully, that won’t be necessary.

The best hired caregivers will provide your loved one with their physical needs – but also become a fixture of support and friendship in these precious years of their life. 

We want to thank you for joining us here at All Home Care Matters, All Home Care Matters is here for you and to help families as they navigate long-term care issues. Please visit us at allhomecarematters.com there is a private secure fillable form there where you can give us feedback, show ideas, or if you have questions. Every form is read and responded to. If you know someone is who could benefit from this episode, please share it with them.

Remember, you can listen to the show on any of your favorite podcast streaming platforms and watch the show on our YouTube channel and make sure to hit that subscribe button, so you'll never miss an episode. Please join us next time as we talk about Safety in the Kitchen for Seniors.

Sources:

https://www.caringseniorservice.com/blog/hiring-a-private-senior-caregiver

https://www.aarp.org/caregiving/home-care/info-2018/hiring-caregiver.html

https://www.kindlycare.com/live-in-caregivers/

https://caregiver.com/articles/hiring-an-in-home-caregiver/

https://www.nursetogether.com/5-qualities-caregiver-excellence/

https://www.griswoldhomecare.com/blog/2015/december/the-dynamics-of-caregiver-and-senior-relationshi/#:~:text=The%20relationship%20between%20seniors%20and,develop%20a%20deeply%20affectionate%20relationship.

https://www.care.com/c/stories/16786/senior-caregivers-the-importance-of-bonding/

https://www.homecareassistancescottsdale.com/importance-of-senior-relationship-with-caregiver/

https://leanonwe.com/blog/5-simple-ways-to-help-your-senior-trust-a-new-caregiver

https://www.homewatchcaregivers.com/care-community-blog/2019/july/5-tips-for-connecting-with-your-caregiver/

https://www.aplaceformom.com/caregiver-resources/articles/keep-positive-relationship-with-caregiver

https://www.cherishedagency.com/blog/build-caregiver-relationships-for-seniors

https://homecareassistance.com/blog/strong-caregiver-relationship

https://homecareassistance.com/blog/strong-caregiver-relationship

https://www.conciergecarefl.com/2014/02/05/helping-senior-build-relationship-caregiver/

https://dailycaring.com/signs-that-you-hired-the-wrong-caregiver/

Family caregivers provide an invaluable service to their loved ones as they age. They allow their loved ones to stay at home, or in the home of their adult children, where they are surrounded by comfort and familiarity. They also provide love, support, encouragement, and patience. This can make the final, difficult years of an older adult’s life feel rewarding and peaceful.

At the same time, caregiving can be difficult. We’ve talked about it before on this show – when a person is forced to balance work and family with caring for their aging parent, it can feel impossible to find that perfect balance. At the same time, needing to stay strong in front of your loved one can be quite challenging, especially considering how heartbreaking it can be to watch a parent age.

On last week’s quick tip episode, we talked about 5 things that caregivers should know before they start out. The focus in that episode was on taking care of you – learning your boundaries, delegating when you need to, practicing self-care. Remember, you can’t care for another person if you aren’t taking care of yourself. You can find that episode on our main show page.

Today, we’ll talk about tips for family caregivers – these are tips that will help you stay on top of your tasks, finances, and organization – so you can stay on top of everything, before you even need to. These are logistical tips that every family caregiver should know. Let’s get started.

Tip number one? Plan ahead for the unexpected. That might sound a little daunting – and scary. The last thing we want is to think about our parent debilitating – but when we don’t plan ahead, we might end up in over our heads after a difficult diagnosis or accident. Too often, a person’s needs change quickly, before we’re ready or prepared. A stroke in the middle of the night or a fall on a slippery sidewalk could make our parents’ needs change drastically and quickly.

With that in mind, make a plan for how you will handle work, family obligations, and more if your parents’ needs increase. Will you be able to provide full time care, or do you need to hire extra help? Talk with your parent about what they want. What does the future look like to them? Where would they like to be? Who would they like to care for them?

A plan should include where your parent will be staying, who will be caring for them, and who their network of support will be. A support network will include doctors, family, friends, and anyone else who might be able to lend a hand. You might think about hiring someone to help clean the house, for instance, so you can focus on other tasks.

If you decide that you will be the primary family caregiver, next plan ahead for what that will mean for your work. If you plan to keep your job, what will you do in the event that your parent needs full time care? Find a person to provide respite care when you aren’t available.

When our parent declines faster than expected, it’s incredibly difficult to grasp emotionally. When we have a plan in place, we can focus on caring for our own needs – as well as our loved ones – without having to figure out a care plan at the same time. It will make an already overwhelming experience significantly easier.

My second tip is to get papers organized. This is actually a critically important step in the planning stages. You never know when you’ll need access to medical or legal records, and you always want to be ready. 

This can be a tough one, I know. Paperwork could be disorganized or hard to locate, or you might need help understanding the files. But you will be so thankful to have everything organized in case of an emergency – when the last thing you want is to be digging through the house to find out what medications your mother might be allergic to.

Now, most doctors and medical care facilities will have your parents’ records. If your parent has more than one doctor, though, then they might not all be in one place. Contact all of your parents’ medical care providers – from their primary care physician to their specialized care providers and dentists. Have them send you copies of the records and organize them into one place. If you can, keep a digital copy and printed copies. Store them somewhere that’s easy to access in case of emergency.

The same goes for any legal documents. These may be harder to locate since there’s no one facility that keeps track of all that paperwork. Look through your parents’ own filings and records and make sure there is nothing missing. Then, contact your parents’ lawyer to double check that everything’s accounted for.

In addition to legal and medical paperwork, you’ll want to make sure you have access to the basic personal information. Where does your parent keep their ID? Their social security card? Medical insurance card? Does your parent have a passport? Make sure all of this information is accounted for. Even though you might know your parents’ social security number off the top of your head – there could be an emergency when you’re not at home, and the backup caregiver needs access to this information. In addition, under situations of extreme stress, an important number might just slip your mind.

Tip number three is planning ahead financially. According to AARP, “family caregivers spend an average of nearly $7000 a year of their own money” on their loved one’s care. Make sure you have savings in place that you are willing to spend on your loved one if you need to. Sort out your loved one’s finances with their help, too. What kind of savings do they have? Are they able to pay for proper care if they need to? What type of insurance do they have? If your parent is still in relatively good health, this might be a good time to look into purchasing long term care insurance.

If you worry that you won’t be able to afford caring for your parent, think about ways you might be able to cut costs. Are there volunteer services available in your area, that help the elderly? Are there other family members who might be able to help you? Does your parent’s insurance cover nursing home care?

Making a financial plan can be distressing – but, again, you will be so glad to know in advance what exactly to expect. Many families assume that their parents have more in the bank than they actually do – and are left to cover the costs at the last minute when this isn’t the case. The more you know ahead of time, the better off you and your loved one will be.

If you’ve taken on the role of a family caregiver, or if it’s something you’re considering, let us be the first to say “thank you” for what you’re doing. It’s not an easy role to step into – but your dedication, love, and devotion to your parent will mean so much and make a remarkable difference in their life.

Make sure you have a plan in place for what caregiving will look like for you, for the organization of important papers, and for the financial aspect of caregiving. That will you give you a huge start. To learn more about what to expect from caregiving, listen to our episode on the sacrifices of caregiving and caring for the caregiver. There’s a lot to learn on this journey – but you’ll be so glad you did.

We want to thank you for joining us here at All Home Care Matters, All Home Care Matters is here for you and to help families as they navigate long-term care issues. Please visit us at allhomecarematters.com there is a private secure fillable form there where you can give us feedback, show ideas, or if you have questions. Every form is read and responded to. If you know someone is who could benefit from this episode, please share it with them.

Remember, you can listen to the show on any of your favorite podcast streaming platforms and watch the show on our YouTube channel and make sure to hit that subscribe button, so you'll never miss an episode. Please join us next time as we talk about a very important aspect of caregiving for both the caregiver and the person they will be caring for and that discussion will be about Connecting with the Caregiver.

Sources:

https://www.health.com/mind-body/13-things-you-should-know-before-becoming-a-caregiver?slide=c0555515-a483-4502-994f-3de4cef1d6b2#c0555515-a483-4502-994f-3de4cef1d6b2

https://www.synergyhomecare.com/blog/posts/2011/8/18/the-3-things-every-family-caregiver-should-know/

https://caregiveraction.org/resources/10-tips-family-caregivers

https://www.grandoaksdc.org/10-tips-for-caregivers/

https://www.caregiversolutions.ca/caregiving/8-tips-new-family-caregivers/

If your loved one is living with Alzheimer’s Disease, there may be days where you just feel helpless. It might seem like no treatment is working, that your loved one’s struggles with communication and mood swings are only progressing, with no end in sight. Alzheimer’s can be a devastating disease – but there are ways to possibly help patients meet those milestones – to encourage communication, peace of mind, and even joy in patients and their loved ones.

One way is through music. Believe it or not, the effect of music on Alzheimer’s patients has been studied carefully for decades and has been found to be one of the most effective ways to help patients with communication, mood, and memory. While music is no cure from Alzheimer’s, it is a medicine-free treatment that can make an enormous difference for both patients and their caregivers.

For patients with Alzheimer’s, peace can be hard to come by. Alzheimer’s is a progressive neurological disorder that impacts language, memory, thinking, movement, problem solving, and personality. That’s a long list – so you can only imagine how difficult it is for patients to lose control of their basic abilities until they cannot perform daily tasks anymore. The disease is as frustrating as it is debilitating, as heartbreaking as it is exhausting, and patients will often face severe confusion, anxiety, and even depression.

People with Alzheimer’s have an increasingly difficult time communicating. Language gets lost as confusion and memory problems get more severe – and eventually, your loved one could lose their ability to speak at all. Without being able to communicate, it can be impossible to understand how your loved one is feeling, what she needs, and what she wants. That can make the act of caregiving, or even of spending time with your loved one, particularly challenging.

It can be devastating for you and your loved one when your loved one can’t communicate what they need – and you just want to make sure you are taking good care of them, that they are comfortable and content. While music cannot help a person speak in full sentences again or fully recover their communication – it has been proven to help a person express herself – among a myriad of other positive things. For a person with Alzheimer’s, this is a really big deal, and can mean the difference between discontent and frustration and peace and joy.

Today, we’ll dive into how music helps patients with Alzheimer’s – and what you can do to use music to help your loved one. From the research that proves just how effective this form of therapy is, to how and when to use it, we’ll cover all you need to know about music and Alzheimer’s disease in today’s episode of All Home Care Matters.

Jeff Anderson, MD, PHD, and associate professor of radiology at University of Utah Health, was a contributing author of a study on how music can help patients with dementia and Alzheimer’s. “People with dementia are confronted by a world that is unfamiliar to them, which causes disorientation and anxiety,” he told reporters following the study, “we believe music will tap into the salience network of the brain that is still relatively functioning.”

Sure enough, that’s exactly what the study found. Patients underwent MRI brain scans as they listened to both music and silence. The music chosen was specific to that patient’s life – a list of songs that caregivers and loved ones believed would be especially meaningful to them.

Through the brain scans, researchers found that when music was playing, the brain seemed to be awakened. According to Science Daily, the results of the study found that, “by listening to the soundtrack, the visual network, the salience network, the executive network, and the cerebellar and corticocerebellar network pairs all showed significantly higher functional connectivity.”

In short, the brain imaging showed that listening to meaningful music can activate the brain – perhaps making symptoms more manageable and improving the quality of a patient’s life. This study only researched 17 patients – but it is one of dozens that has tackled the subject matter – and found overwhelmingly positive results.

A similar study at The University of California at Davis found that music lessens the aggressive behaviors of Alzheimer’s patients and decreases the amount of medication needed. This study followed 4,107 patients in 265 nursing homes across California. It found that “the use of antipsychotic drugs declined by 13% and anti-anxiety medications declined by 17% each quarter for residents with dementia using the music program. The odds of depressive symptoms decreased 16% per quarter and the odds of reported pain decreased 17% per quarter. In addition, the number of days on medications declined by 30% and aggressive behaviors reduced by 20%.”

So, why does music work so well for dementia and Alzheimer’s patients? Well, for one thing, our musical memory is stronger than the part of our brain that stores names, faces, and words. Ever listened to a song you hadn’t heard since high school and been surprised when you remembered every lyric? The same is true for dementia and Alzheimer’s patients.

In some cases, patients with dementia have been able to complete full songs on the piano, even when they struggle to communicate anything else. That’s because music – along with the muscle memory that makes it so hard to forget how to ride a bike or throw a ball – is known as Procedural Memory. Explicit Memory is what stores other information – like faces, names, events, and reasoning. So, when a dementia patient forgets aspects of their Explicit Memory, their Procedural Memory often remains unaffected.

Research has found that for some patients – particularly those with musical backgrounds themselves – have a preserved response to music, even after their dementia is in its advanced stages. According to Practical Neurology, “familiar tunes and lyrics can be recognized across all stages of Alzheimer’s Disease. Due to bonds formed early in life between highly familiar tunes and lyrics, the ability to recognize such information is very functional in individuals with Alzheimer’s Disease.”

Now, this doesn’t mean that a person with Alzheimer’s will be belting out every lyric of an old favorite song – but it does mean that the song may illicit a reaction – like a smile, a laugh, or even dancing – from a patient. In some cases, a patient will sing along to the lyrics – even in the late-stages of Alzheimer’s. 

Music helps people with Alzheimer’s recall memories and emotions – especially in the earlier stages of the disease. This is because in addition to music being stored in a different section of our memory, music also evokes emotion. According to neurologist Oliver Sacks, “music evokes emotion, and emotion can bring with it memory…it brings back the feeling of life when nothing else can.”

In addition, music aptitude and appreciation are abilities that last in Alzheimer’s patients even after many other abilities have deteriorated. That means that a person can be reached through music even after other means of communication are lacking. So, music is sort of a window to the soul in this way – a way to connect on a personal level with a loved one, when other methods have not succeeded.

Emotional connectivity is especially meaningful in the later stages of Alzheimer’s, after a person has lost the ability to engage physically and emotionally with a loved one. When a patient listens to music, they might dance – which can lead to touching, hugging, or even just a level of togetherness they have not felt in some time. Socialization, especially meaningful socialization in the form of human contact, can help a person have an increased quality of life – and make them feel at peace and contented.

This also helps with communication. Music is a way for a person to communicate without needing to speak. They can indicate how they feel by reacting to a song. When they come to life through music, it’s because they feel connected in communication in a way they simply aren’t without the use of music.

It’s not just listening to music. Many folks with Alzheimer’s or dementia take music or singing lessons or engage in interactive music therapy. Singing and playing an instrument exercises the brain in an engaging and fun way for patients. The more a brain is exercised, the stronger and healthier it will be.

Music also works wonders for stress and anxiety – both prevalent in Alzheimer’s patients. Music engages the parts of the brain involved in cognition, emotion, socialization, and even motor functioning. Music decreases stress and anxiety in people across all walks of life, and Alzheimer’s patients are no different. The calming and familiar sound of music can help a person feel safe and secure, nostalgic and even joyful.

This is so important for Alzheimer’s patients because so much of the world feels unfamiliar to them as they lose their memory and grip on reality. Music can keep them grounded, help them to feel at home, even in the late stages of the disease.

It’s not surprising, then, that music can help a great deal with changes in mood and agitation. Mood swings are ever common in Alzheimer’s patients, and they can be especially difficult to know how to solve. It’s heartbreaking and frustrating when our loved one lashes out, suffers a meltdown, or becomes paranoid – and most people will try anything to keep these mood swings at bay.

Mood swings occur, in part, because patients do not have a grip on their surroundings, and become panicked, confused, and disoriented. They are exacerbated when people react in harsh, angry, or frustrated manners, and can usually be calmed when people react in a soothing, understanding tone.

By playing meaningful, thoughtfully chosen music for a patient, their grip on reality becomes that much clearer, their stress that much more decreased, and their mood swings less frequent. When a person feels safe, calmed, and soothed, they are less likely to act out – because their mood is increased, their sense of security is increased, and their quality of life is improved. 

It’s not just the patients who benefit from music. Music can help caregivers, too. Playing music helps a caregiver to connect with his or her patient in a more meaningful way. Songs that illicit memory will help a caregiver to learn more about their patient. Songs that make a patient dance give the caregiver an opportunity to connect with a patient through touch and laughter. Additionally, just like music decreases the stress and anxiety of patients, it does the same for the caregiver.

Caregivers deal with enormous amounts of stress and anxiety, which can lead to depression or even poor physical health. Music creates a sense of calm and escape for the caregiver – so they can feel relaxed and at peace while they’re helping their loved one. In this way, music is a form of self-care – which is enormously beneficial for caregivers.

How do you implement music into your loved one’s life? Unfortunately, it’s not quite as simple as blasting whatever you want when your loved one is around. Songs need to be carefully selected to fit your loved one’s personality – and the wrong music could make them feel more stressed or anxious.

So, when choosing a playlist for your loved one, think about their preferences. What song did your parent used to play again and again? What music might evoke memories for them – from happier, more peaceful times? If you aren’t sure, talk to other friends and family who might have an idea – and you can even look through your parents’ own music collection to see what they like to listen to.

You can choose music that aligns to the time of day and the mood of the situation. Soothing music is great for meals and baths, upbeat music is wonderful when you want your loved one to feel happy and uplifted.

Avoid playing other sounds when music is playing. Overstimulation can lead to headaches, stress, and confusion. So when it’s music time, make sure the TV is turned off, windows and doors are shut, and other distractions are out of the way. Don’t overdo the volume, but make sure it’s loud enough for your loved one to hear. Mayo Clinic suggests playing music that won’t be interrupted with commercials. Commercials can interrupt the mood and cause confusion and disorientation.

In addition, look for songs that encourage movement. If a song has a beat to clap to or even dance with, that’s fantastic. You can even start dancing first, to encourage your loved one to follow. In addition to dancing, feel free to sing along to the music. Your loved one just might sing along with you – which can help stimulate memories and strengthen the brain.

If your loved one is reacting negatively to a song, change it. Remember – music is meant to have a positive, calming effect – so you want to make sure it’s doing just that. Otherwise, mood swings and agitated moods, headaches and exhaustion, might be to come. On the contrary, if your loved one reacts happily and positively to a certain song – play it often! Never be afraid to repeat the same song again and again, as long as your loved one seems to be benefitting from it.

In addition to playing your own music for your loved one, consider music therapy or even instrument or singing lessons (depending on the severity of your loved one’s disease). A music therapist is trained to help their patients strengthen emotion, cognitive abilities, thoughts, and memories. They will use music to enrich and stimulate, to help with focus and stability. Music therapists will also have plans in place for the different stages of Alzheimer’s – and know what methods will be the most beneficial for each stage.

Music lessons and singing lessons can be hugely beneficial, too. Playing an instrument stimulates the brain enormously – and at the same time, lessons can provide social engagement for patients, which can help increase a patient’s quality of life.

Playing an instrument engages motor skills, listening, visual characteristics, and attention. The brain has to communicate with the hands while they play an instrument, while also being stimulated by the music itself. It’s an incredibly beneficial cognitive experience.  

There are plenty of music lessons designed for people with memory problems, including Alzheimer’s. Check out your local listings to see if there are Alzheimer’s music or singing classes in your loved one’s area.

Music is not a guaranteed treatment for people with Alzheimer’s. Some respond to it more than others, and unfortunately, there’s no way to know how it will affect your loved one until you give it a try. Time and again, though, research has shown positive reactions to music, and it’s one treatment plan that is well worth the effort.

Other creative activities, such as art, can also help Alzheimer’s patients with their stimulation and quality of life. Creativity is a meaningful way to engage with parts of the brain that benefit from stimulation – so the more you can help your loved one engage with, the better. Many people choose to enroll their loved ones in music and art therapy, or else they implement both practices themselves at home.

While music is not a guaranteed solution, it can work wonders on patients with Alzheimer’s – and their caregivers. The more you can do to increase quality of life and reduce stress, the better. Music can help people with Alzheimer’s find meaning, security, and a great sense of peace.

We want to thank you for joining us here at All Home Care Matters, All Home Care Matters is here for you and to help families as they navigate long-term care issues. Please visit us at allhomecarematters.com there is a private secure fillable form there where you can give us feedback, show ideas, or if you have questions. Every form is read and responded to. If you know someone is who could benefit from this episode, please share it with them.

Remember, you can listen to the show on any of your favorite podcast streaming platforms and watch the show on our YouTube channel and make sure to hit that subscribe button, so you'll never miss an episode. Please join us next time as we talk about Tips for Family Caregiver’s.

Sources:

https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/expert-answers/music-and-alzheimers/faq-20058173

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It’s no secret that being a caregiver comes with its challenges – and sacrifices. For many people embarking on this new journey, the massive pressures can come as a bit of a shock. If you’re thinking of becoming a caregiver, but are still on the fence, it’s important to know what to expect before you make a permanent decision. That way, you can know whether becoming a family caregiver really is the best decision for you and your loved one.

More and more people are choosing to become family caregivers. According to a study by the Center for Retirement Research at Boston College, about 17 percent of adult children end up caring for their parents at some point in their lives. The reasons are endless. Some people choose to become caregivers to avoid paying the hefty fees for assisted living or nursing homes. Others want to help their loved one be in a position where they can stay home. Others still want to spend the extra time with their parent – keen on caring for the person who once cared for them. 

Regardless of the reason you’re thinking about becoming a caregiver, it’s important to know that you will have to make sacrifices. As much as we might wish otherwise, it’s simply impossible to care for our parents while working forty plus hours a week and handling the rest of our responsibilities at home. Now, that’s not to say that you can’t work, it’s just to say that you might need to make adjustments to your schedule, or delegate some errands and other help in order to find that balance. But we’ll dive into more concrete tips later on. 

Today is all about caregiver sacrifices. To learn more about the everyday stresses of caregiving – and how to cope – check out our episode on Caring for the Caregiver. We’ve also got a quick tip episode for caregivers that can help you understand what to expect in the day to day.

On this episode, though, we decided to focus on the sacrifices, especially the ones that might come as a surprise. See, we hear all too often that new caregivers simply didn’t know all the sacrifices that come with caring for a loved one. Again, understanding the sacrifices is key to helping you make an informed decision about whether or not this is the right step for you.

Before we get started, I just want to take a minute to acknowledge how, in spite of the sacrifices, caregiving is immensely rewarding and incredibly important. You’ll be making an enormous difference in your loved one’s life, and you’ll get to be there for all the most precious moments with your Mom or Dad. Still, unexpected sacrifices can make those rewarding moments a little more tainted. So, the more you’re aware of in advance, the better you can prepare for what’s ahead, so when you’re in the moment you can actually be in the moment.

Perhaps the greatest sacrifice a caregiver can make is a life free of intense levels of stress and pressure. According to AARP, 36% of family caregivers believe their situation is highly stressful. It makes sense. A survey by the Associated Press and the NORC Center for Public Affairs Research found that 45% of caregivers have outside jobs – and have to use some or all of their vacation time for caregiving duties.

That’s a tough balance to maintain. Stress can lead to health problems, depression, and exhaustion – so it’s essential that as a caregiver, you’re making time for yourself. Nothing is worth sacrificing mental stability to a point where it’s impacting your health. Remember, if you’re not energized or in good health, your duties as a caregiver could suffer.

Every other sacrifice a caregiver makes – from finances to a social life and more – will contribute to the stress. That’s why stress is a more general sacrifice – because it envelops pretty much, well, everything else. And if stress can have detrimental effects on our well-being, then that means we need to tread carefully with every other sacrifice we face. As you listen to the sacrifices listed and worry that they will just be too much on you – trust that instinct. Forgive yourself if you’re not in a place in your life where you can sacrifice so much – if that’s the case there are plenty of other options available. There is absolutely nothing to feel guilty about. Together with your loved one, you can come up with the right solution for both of you.

Many families – especially those whose loved one is experiencing dementia – might choose to stay at home regardless of these sacrifices. We will offer ways to help with each of these sacrifices so that you can find a way to manage if you need to step into the role. You can also think of solutions like respite care, finding extra help from other family members, and more. To learn more about your options, check out our episode on choosing the right type of care.

One major sacrifice caregiver’s make is with their career. According to AARP, about 6 in 10 caregivers continue to work full time while caregiving – but it doesn’t come with zero sacrifice. Even if you are able to keep working while you care for your loved one, there’s likely to be missed deadlines, meetings, or burn out to come.

You might need to take less hours, which could mean a lower income. AARP says that, “many working caregivers report health problems, depression, and lost time and lower productivity at work.” When you’re trying to focus on work after being up for hours during a particularly tough night with Mom, or you’re in a meeting and get a call that your Dad needs your help, it’s not a shock to hear that working can get a little difficult.

There will be missed workdays ahead – even the important ones, where you’re supposed to meet with big clients or have a presentation for your boss. Life happens, and when you’re caring for an aging loved one, it happens more often than you’re probably used to.

While there are some options, they’re not always ideal. For instance, the Family Medical Leave Act allows caregivers a three-month leave from their work, but the employers are not required to pay you during that time.

Caregiver Jody Gastfriend wrote in the Harvard Business Review that, “on average, caregivers miss 6.6 workdays a year. The lost productivity adds up to a big cost to companies – to the tune of $17 to $33 billion annually. And since getting rid of children or parents is not an option, exiting the workplace is often an overwhelmed caregiver’s last resort.”  

Now, there are ways that you can make this work and caregiving balance work – without leaving your job. First, check to see if your employer offers any eldercare benefits. If they do, you’ll be able to come up with a plan with your company for the future ahead.

If not, look into backup care programs like adult day care facilities, volunteer services, or even friends and family with some extra time on their hands. The hard truth is that this isn’t something you can do alone, especially if you’re working. But once you have a plan in line for how your parent will be cared for when you’re away – you will be able to handle work while caregiving much more efficiently – and at less of a sacrifice to your career.

Financial sacrifices are another huge burden for family caregivers. Many caregivers choose this route in order to save on money – but don’t quite realize just how much they’ll end up spending. According to the Associated Press and the NORC Center for Public Affairs Research, 41% of caregivers have been forced to dip into their personal savings, and 25% have cut back on their retirement fund. NORC also found that eight in ten caregivers spend their own money on caregiving costs. AARP found that “family caregivers spend an average of nearly $7000 a year of their own money,” on caregiving. Of course, this is still significantly less than the cost of assisted living, which is around $1000 to $5000 a month.

Unexpected costs of family caregiving can come in many forms. You might need to install safety bars, wheelchair ramps, shower benches and other precautions in your loved one’s home to make it safer. You could also be hit with transportation costs, the cost of medical supplies, and the cost of feeding another person. If your loved one moves into your house, your utilities could increase.

Now, if the person you’re looking after has Medicaid, you might be able to be paid for being their caregiver. Look into your state law as well as your parents’ insurance plan. Otherwise, try to balance out the new payments by seeking senior volunteer services for extra help, or seeking assistance from family friends for things like grocery runs. The financial burden can be severe, but at home caregiving is the least expensive option for many families.

Socialization is another major sacrifice for family caregivers. Especially for those sandwiched between their elderly parents and their young children, who are also working full time, finding extra time to see friends can seem impossible. Socialization can do wonders for our mental health. Laughing with friends, as they say, is the best medicine. So, without the opportunity to see friends, you might feel pretty isolated.

Isolation, unsurprisingly, can lead to depression – especially when it’s accompanied by the high emotional and physical stress of caring for an ageing loved one. While it might seem like less time with friends is no big deal, missing out on the nights with friends can be more painful than you might expect – especially if you have to scroll through happy pictures of your friends on Instagram.

You might have to miss important events – like weddings, birthday parties, or graduations – if your back up caregiver cancels at the last minute, or your mother or father is having a tough day.

Luckily, the age of Zoom has provided new opportunity for virtual socialization. Now, it’s standard to meet with friends for a morning coffee over the laptop cam – and I highly recommend it. Take advantage of the technology at your disposal to meet up with friends from time to time, if you can’t do it in person. It’s amazing how much a few minutes with a pal can help your mental health – and get you re-energized to go back to your role as a caregiver when the call is over.

Another sacrifice too often made is with personal care. According to the NORC survey, one third of respondents said they have neglected dental care, health exams, and forgone medical treatments. 39% of participants said they have a physical or mental health condition that impacts their daily life – and that their health issue, combined with their responsibilities as a caregiver, makes it much more difficult to manage their own health.

According to Next Avenue, “many caregivers don’t discuss the issues with their doctors, even as they make sure their loved ones’ medical needs are met.” Many doctors simply don’t know how their patients are struggling – but if they did, they might be able to offer solutions or help the caregiver come up with a plan to ease some of the pressure.

When we neglect our own health, it can be detrimental. The last thing we want as caregivers, is to find out too late that we have a health issue we could have treated had we not canceled our last three doctor appointments. While it might seem selfish to spend time on our own health when our parent needs us, it’s essential.

We can’t be a great caregiver if we are suffering with our health – and something as small as a tooth ache could be an indicator of a bigger problem – so never ignore your own health needs because you feel guilty or are afraid you don’t have time. This is something that you must make the time for – because sacrificing good health just isn’t worth it.

In addition to neglecting health matters, some caregivers sacrifice personal hygiene or other daily care. If you’re so overwhelmed that you just don’t have time to take a shower, or change out of yesterday’s clothes, this is a big indicator that you need some extra help. Never be afraid to delegate – it doesn’t make you any less of a caregiver. No one can do everything, after all, even if we want to. And, again, when we make more time for ourselves, we will be in a better place to be there for our loved one.

Now, as plentiful as the sacrifices are – it’s important to remember that this time in your life will not last forever. If you feel that you are so stressed and under so much pressure that you are unable to appreciate these precious years with your loved one, it might not be worth the sacrifice. If that’s the case – don’t feel ashamed. The earlier you can come to that realization, the sooner you and your loved one can work to find the best possible plan.

At the same time, if you feel that being a caregiver is giving you a chance to spend unparalleled, meaningful time with your loved one – then it all just might be worth it. To help with the stress and bring in the reward, think about how you can make the experience more joyful for both of you.

Play board games, cook fun themed dinners, invite friends over to socialize with both of you from time to time (even over Zoom). If your parent is stuck in bed, have movie nights complete with your loved one’s favorite snacks. In these ways, you’ll be giving both you and your parent a break from the stress of everyday life. You’ll be savoring the happy moments, holding onto them when they mean the most.

In addition to savoring those little moments – find time to savor by yourself. Read a book when you can, go for walks, enjoy a hobby like playing an instrument or painting. The more you can do for yourself, the less stress you’ll feel. That’s because by taking time for yourself, you’re giving your brain a chance to relax, to strengthen up, so you can be ready for anything.

By understanding the sacrifices – from career, to finances, to mental health and socialization – you can have a better idea of whether being a family caregiver is the best choice for you. At the end of the day, it’s a tough job physically, emotionally, and financially – but with the right preparation and tools, it can be an extremely meaningful experience.

We want to thank you for joining us here at All Home Care Matters, All Home Care Matters is here for you and to help families as they navigate long-term care issues. Please visit us at allhomecarematters.com there is a private secure fillable form there where you can give us feedback, show ideas, or if you have questions. Every form is read and responded to. If you know someone is who could benefit from this episode, please share it with them.

Remember, you can listen to the show on any of your favorite podcast streaming platforms and watch the show on our YouTube channel and make sure to hit that subscribe button, so you'll never miss an episode. Please join us next time as we talk about Music and Alzheimer’s.

Sources:

https://journals.lww.com/cancernursingonline/Abstract/1999/08000/Stress_associated_with_tasks_for_family_caregivers.2.aspx

https://www.aplaceformom.com/caregiver-resources/articles/personal-sacrifices-of-caregivers

https://www.forbes.com/sites/nextavenue/2018/11/11/the-personal-sacrifices-family-caregivers-make-for-their-loved-ones/?sh=490bc337f798

https://www.longtermcarepoll.org/long-term-caregiving-the-true-costs-of-caring-for-aging-adults/#1

https://www.agingcare.com/articles/the-sacrifices-of-caregiving-139977.htm

https://www.brainsupportnetwork.org/how-much-should-family-caregivers-sacrifice-panel-discussion-notes/

https://caregiverhelp.com/sacrifices-of-caregiving/

https://www.alzinfo.org/treatment-care/blogs/2017/08/the-sacrifices-of-caregiving/

https://www.carolinafep.com/library/the-sacrifice-and-commitment-of-a-family-caregiver.cfm

https://www.pbs.org/wgbh/caringforyourparents/handbook/caringcaregiver/whycaregivers.html

https://www.washingtonpost.com/business/the-cost-of-caregiving-a-sacrifice-for-our-entire-family/2017/12/01/7d8c157e-d55d-11e7-a986-d0a9770d9a3e_story.html

https://www.alz.org/help-support/caregiving/caregiver-health/caregiver-stress

https://www.agingcare.com/articles/strategies-for-coping-with-caregiver-stress-135916.htm

https://www.atrainceu.com/content/6-stress-management-caregiver-0

https://www.aarp.org/caregiving/life-balance/info-2019/caregiver-stress-burnout.html

https://www.focusonthefamily.com/get-help/becoming-your-loved-ones-caregiver/

https://www.aarp.org/caregiving/life-balance/info-2019/working-caregiver-tips.html

https://hbr.org/2014/07/no-one-should-have-to-choose-between-caregiving-and-work

https://www.nextavenue.org/sacrifices-personal-caregivers/

We speak a lot on this show about how to provide the best care to our loved ones as they age – but today, we’re going to talk about how to provide the best care to the caregiver. Being a caregiver for our parents, spouses, or grandparents can be immensely rewarding – but it comes with its own unique sets of challenges.

The responsibilities of a family caregiver often grow over time – and as we work to nurture and tend to our loved one, we might lose time for ourselves. We not only need time to engage in life outside of our loved one’s daily routine, but we also need to be able to tend to our own feelings. Watching those we love decline is devastating – and it’s essential to have the space to feel what we need to, so we aren’t holding everything in.

According to AARP, almost 42 million Americans in the US are caregivers – and the majority of those are unpaid. For most older adults, receiving care from a family member is the best option – both financially and emotionally. Unpaid caregiving, though, comes with other sacrifices – largely for the caregiver.

Many are forced to balance tending to their loved one with their career, raising families of their own, and a stack of other responsibilities. Some family members are forced to leave their own home behind to move in with an aging parent or make room in their own busy household for their parent to move in with them. There’s no doubt that this can be a wonderful experience for many families, who feel that the bonds they are creating with their loved ones are stronger than ever.

Still, the emotional strain, sacrifices, and the seemingly endless responsibilities and challenges, can make the experience exceedingly difficult for a caregiver who is not receiving the support and care they need for themselves. When a caregiver is cared for, they will find more reward and less stress in the whole experience. They will also be in a better place to tend to their loved one.

First of all, in the days that caregiving seems especially difficult – maybe your parent has regressed, or you were late to a meeting because your parent’s doctor appointment ran late, maybe your parent was tired and angry today, and maybe you were too – remember that you are providing your loved one an incredible service. Still, that doesn’t mean you can’t take some time to care for yourself.

You might feel that to take time away from your parent to focus on yourself seems selfish or unnecessary. Let me be the first to say – it’s the most selfless thing you can do. When you are in the best shape possible, your loved one’s care will be that much better.

Now, you might be wondering why you should focus on yourself. According to a study by the University of Netherlands, “family members who provide 20 hours of caregiver support or more a week report increased depression and psychological distress, impaired self-care, and worse self-reported health.” At the same time, “more than half of caregivers say a decline in their health affects their ability to provide care.”

It can be devastating to watch our loved ones decline, and as they do, we might feel we are declining alongside them. Neglected feelings of sadness and stress get steadily worse as our loved one’s health does – and our ability to care gets worse just when our loved one needs it more than ever.

In a survey by SCAN Health Plan, 54% of caregivers “feel guilty about taking a break from their caregiving tasks to make time for themselves,” but when they do take that time, they end up providing better care than they would have without it. Why? Because they feel rested, energized, and in a healthy enough head space to handle any unexpected challenges or difficulties.

Not only does caring for yourself matter in terms of the care you can provide – but it also matters in terms of your own physical health. According to caregiver.org, “estimates show that between 40 to 70% of caregivers have clinically significant symptoms of depression, with approximately one quarter to one half of these caregivers meeting the diagnostic criteria for major depression…depressed caregivers are more likely to have coexisting anxiety disorders, substance abuse or dependence, and chronic disease.”

In addition, “about one in ten (11%) caregivers report that caregiving has caused their physical health to get worse. Caregivers have lower levels of subjective well-being and physical health than non-caregivers.”

Still, when we get the support we need, we can combat these issues and risks once and for all. Let’s start by asking ourselves a series of questions, in order to analyze our own health and needs.

Have you ever neglected your own self care for fear of being selfish?

Are you hesitant to put yourself first?

Do you have trouble asking for help?

Do you ever delegate certain tasks?

When is the last time you did something for yourself?

Do you feel supported?

Do you have friends or family members to talk to?

How do you cope with stressful situations?

What is causing you the most stress?

Establishing a solid support system is the first critical step to taking care of yourself. If you don’t have anyone to talk to, you might be suppressing emotions that will build up over time. Just having a friend to vent to or a spouse whose shoulder you can cry on can make an enormous difference. Emotional release is necessary and important. Without it, you just might become depressed or intensely overwhelmed.

If you don’t have a friend or family member to lean on from time to time, think about joining a caregiver support group. Now offered over Zoom due to the pandemic, these groups can provide you with an outlet for your emotions, as well as a community of other caregivers to share their insight and support. A support group is a safe place to ask questions, express frustration, and even get some helpful care tips from others who have been in your shoes.

In addition to support groups, counseling and therapy services are available to caregivers. If you just need a space to vent, but aren’t interested in group therapy, consider one on one therapy. There are counselors who specialize in caregiver support who will provide a setting in which to vent, cry, or even shout in anger. Your therapist will be able to provide you with tools you can use to get through stressful moments and handle tough feelings. Look into your hometown’s resources to see if there are free or low-income therapy services available to you.

Finally, look through your contacts to see if there are others in your life facing a similar situation. Do you have a friend with aging parents? A colleague who had to go down to part time to care for their loved one? Don’t be afraid to reach out and ask someone to coffee. Building friendships with people already in your life who have faced similar challenges can be extremely rewarding. It’s amazing how a cup of coffee and a vent session can change a whole day for the better. During the pandemic, consider Zoom meetings over coffee, which can be just as effective.

In addition to finding a support system, it’s also important to find someone to help. You might feel guilty asking for help. After all, this is your parent, and you are supposed to be able to provide them with everything they need, right? The truth is, though, this is an extremely difficult job. And when we’re balancing it with the rest of our lives – there are days and even weeks when it can all feel like too much. We cannot be everything for everyone – and delegating certain tasks can make a huge difference.

Whether delegating means asking another family member to help clean the house, having a spouse drive the kids to school, or even having our loved one’s friends stop by to socialize with our loved one so we can take a nap – do it. The smallest things can make the biggest difference.

If we are trying to balance everything, dire mistakes can happen. We might give the wrong dosage of meds to our parent because we were trying to help our child with their homework at the same time. We might forget about a doctor appointment because we are trying to balance too many other things. When we ask for help, we are creating a safer environment for ourselves and our loved ones – to assure they are receiving the best possible care.  

Remember – help is never something you need to feel guilty for needing. We are all human – and when we are faced with such an exhausting and challenging task, we just need some assistance to get everything done. When we are not having to balance everything, we can focus on what really matters.

If friends or family are not available to help, considering hiring someone to keep up with some other duties. Whether hiring a housekeeper to stop by once a week for deep cleaning, paying for a meal kit service to save you a few trips to the grocery store, or having someone tend to the garden – this can be well worth the expense, especially when you are saving money by being the primary caregiver for your family member. You can find inexpensive helpers on TaskRabbit, or by looking through your community resources. There are also volunteer programs available in many communities, where someone will come to help around the house or with your loved one while you take a much-needed break.

In addition to getting help and finding support, make sure to cut in time for breaks. This doesn’t have to mean a two hour break every day to go the movies or grab lunch. It can be as simple as short, 5-minute moments to yourself, where you listen to a favorite song or make a gratitude list of what you’re thankful for. You can drink a glass of water, perform guided meditation from an app like Calm, do some stretches, or go on a quick walk. These short breaks can help you to feel revitalized, energized, and calmed.

In addition to the short breaks, find time for yourself at least once a week for a longer one. Take a few hours on a Saturday to go for a hike or read a book, socialize with friends or work on a hobby. You don’t need to ask for permission to take breaks – you just need to do it. If you feel guilty, do it anyway. The fact is, you’ll feel a lot more guilty if you have an emotional outburst due to penned up emotions or miss a medication dosage due to exhaustion. Taking breaks is absolutely essential.

Finally, it’s important to learn how to manage stress. Think about what parts of the care make you the most stressed. Is it handling the medications? Trying to balance the schedule? Running errands? When you make a list of what is causing you stress, you can determine the best ways to alleviate that stress.

If you struggle with medications, it can be a huge help to highly organize the medicine cabinet and prescriptions, to make sure that everything is laid out and never missed. To learn more about organizing medications, listen to our episode on medication safety for seniors. Organization and routine can help to make this aspect of caregiving feel a lot more manageable.

If you struggle to find time for errands, delegate, delegate, delegate. That could mean asking a friend or family member, but it also might be getting Amazon delivery for groceries or using apps like Instacart. There are so many resources available to us in 2021, and if it will help our mental health, it’s well worth it to take advantage of them.

If you are stressed about helping your parent dress or bathe, consider playing soft, relaxing music while you perform these tasks, so your mind can feel calmer and focused on something else at the same time. It can be hard to help our parents with anything that feels embarrassing, but if we can find a way to remain calm and relaxed, we will feel much better.

If we are stressed because we feel unstimulated, think about games or movies we can engage with alongside our loved one. Filling our day with stimulating activities will help them as much as it will help ourselves – because the truth is, some of these days can feel rather long and endless. If we fill them with engaging and meaningful activities – like movies, games, or crafts – we will feel a lot more fulfilled, and so will our loved one.

When you are taking breaks, accepting help, and have a solid support system in place – you’ll find that life in itself is much easier to manage. You will be in a better place to care for your loved one because you will be feeling stronger, healthier, and far more rested. I cannot emphasize enough just how much these simple methods of self-care can help a caregiver.

If you are not a caregiver but have a caregiver in your life that you want to support, there are many things you can do to help them. From yard work to dropping off pre-cooked dinners, any little kindness will go a long way for a friend or family member caring for a loved one.

Be prepared for the caregiver in your life to refuse help the first few times you ask. As we’ve mentioned, it’s hard for a caregiver to accept that they need assistance – feelings of guilt and inadequacy tend to come up and a caregiver would likely rather do something themselves if they think they are capable (or even if they don’t). Because of this, it’s important that you don’t stop asking. Be persistent. You just might find that after enough gentle reminders that you’re available, they might be ready to take you up on it after some careful thought (and when they know you really mean it, and this isn’t a burden to you).

When asking a caregiver how you can help them, be as specific as possible. Refrain from just saying “do you need help?” or “what can I do?” Instead try, “lasagna or salad for dinner? I’m buying” or “I’m headed to the dry cleaner’s, what can I take with me?” Offering to help with specific errands will be so appreciated, and you’re making it even easier on your friend by not making them come up with a list of what they need assistance with.

In addition to helping a caregiver with daily tasks, offer to be their ear whenever they need one. Bring cups of coffee and conversation when you drop off the groceries. You can even bring a board game or movie to watch. Your friend might feel like a burden and not want to ask for socialization – but if you’re already present and can prove that there’s nowhere you’d rather be, they will be happy for the time spent with a friend. If they don’t want to talk about what they’re going through, don’t push it, but be ready to listen and offer support if they do.

Whether you’re a caregiver yourself or you are hoping to support a friend or family member who is, knowing how to decrease stress, increase stimulation, and delegate tasks is enormous. Caregiving should be an incredibly rewarding experience – and the easier we make it on ourselves, the more meaningful it will be for all of us.

We want to thank you for joining us here at All Home Care Matters, All Home Care Matters is here for you and to help families as they navigate long-term care issues. Please visit us at allhomecarematters.com there is a private secure fillable form there where you can give us feedback, show ideas, or if you have questions. Every form is read and responded to. If you know someone is who could benefit from this episode, please share it with them.

Remember, you can listen to the show on any of your favorite podcast streaming platforms and watch the show on our YouTube channel and make sure to hit that subscribe button, so you'll never miss an episode. Please join us next as we talk about Caregiver Sacrifices.

Sources:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5513610/#:~:text=A%20caregiver%20is%20an%20individual,for%20a%20person%20in%20need.&text=As%20is%20the%20case%20for,and%20they%20are%20usually%20unpaid.

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https://dailycaring.com/6-ways-to-make-it-easier-for-caregivers-to-take-a-break/

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https://adaa.org/find-help/by-demographics/caregivers

https://www.aplaceformom.com/caregiver-resources/articles/caregiving-takes-toll-on-caregivers-health

https://www.aarp.org/caregiving/local/info-2019/national-resources-for-caregivers.html

https://www.scanhealthplan.com/about-scan/press-room/january-2018/scans-national-survey-finds-seniors-are-concerned-with-the-emotional

https://www.aarp.org/content/dam/aarp/ppi/2020/05/full-report-caregiving-in-the-united-states.doi.10.26419-2Fppi.00103.001.pdf

If your loved one has been diagnosed with Parkinson’s disease, you might be feeling lost, confused, scared, and overwhelmed with concern. It’s a diagnosis no one wants to hear, but one that far too many families are impacted by year after year. In fact, according to Parkinsons.Org, about 10 million people worldwide are diagnosed with the disease each year.

It’s estimated that about one million Americans have Parkinson’s disease today. That’s more than those who have muscular dystrophy, multiple sclerosis, and amyotrophic lateral sclerosis (or ALS) combined.

Those are staggering numbers. But what exactly is Parkinson’s Disease? How can we provide the care our loved one needs after a diagnosis? How can we care for ourselves? What can we expect in the years ahead? On today’s episode, it’s all about understanding Parkinson’s Disease. By the end of this episode, you should have a much clearer understanding of what your loved one is experiencing – and how you can prepare for what’s to come.

Let’s start with the basics. With numbers as staggering as the ones previously mentioned, it might not be surprising to learn that Parkinson’s disease is the second most common age-related neurodegenerative disease in the world. The most common of these diseases is Alzheimer’s. To learn more about Alzheimer’s Disease, head to our episode page to listen to our many episodes about understanding Alzheimer’s and dementia.

Because Parkinson’s tends to be age related, most people are diagnosed over the age of 50. However, it’s estimated that about 4% of Parkinson’s patients are diagnosed at a younger age. One famous example is Michael J. Fox, who was diagnosed with early onset Parkinson’s at the young age of 29.

The cause of the disease is largely unknown, but the effects are clearer. When a person has Parkinson’s, the brain cells that produce dopamine become impaired or die. Because dopamine controls movement, when these neurons are no longer functioning, movement is drastically impaired. It is unclear what exactly causes these neurons to misfunction or die.

In addition to dopamine, the nerve endings in a Parkinson’s patient’s brain that produce norepinephrine are lost. Norepinephrine sends chemical messages through the sympathetic nervous system, which controls heart rate, blood pressure, and other automatic body functions. Scientists believe that this is why Parkinson’s patients often suffer from irregular blood pressure, slow movement of food through the digestive tract, and fatigue.

Many people with Parkinson’s also have Lewy bodies in their brain cells – which are clumps of abnormal proteins inside neurons. Lewy bodies most often form in the parts of the brain that control memory and movement. This is why many people with Parkinson’s also suffer from Lewy body dementia. To learn more about that condition, listen to our episode on understanding Lewy body dementia.

While it’s unclear what exactly causes Parkinson’s, some cases appear to be hereditary, while others have been linked to genetic mutations. In most cases, though, the diagnosis appears to be random.

Researchers do believe that the disease might be caused by environmental factors – such as exposure to toxins or head injury – but not enough consistent evidence has occurred to pinpoint a straightforward cause. We can only hope that over time scientists will gain a better understanding of why the disease occurs in the first place.

Parkinson’s disease varies widely from person to person. That means that while some symptoms are more frequent or expected, there’s no way to predict what specific symptoms one person might experience or when they might experience them.

Parkinson’s disease is diagnosed clinically – which means that the disease cannot show up on brain scans or through blood tests. Instead, a diagnosis is based on a Doctor’s examination of a person’s medical history and evaluation of symptoms. 

If you’re worried that you or a loved one might have Parkinson’s Disease, but have not yet received an official diagnosis, you might want to see a movement disorder specialist. Movement disorder specialists are neurologists who specialize in Parkinson’s disease among other movement disorders. These doctors will be able to carefully assess the patient and symptoms, and make a diagnosis based off of his or her specialized expertise.

So, what exactly are the symptoms of Parkinson’s disease? Again, the symptoms do vary from person to person, in terms of both the severity and the types of symptoms. Still, there are three movement symptoms that are particularly common, especially in the early stages of the disease.

These three symptoms include stiffness, slowness of movement, and a resting tremor. It is possible for a person to just have one of these symptoms or have all three. Even if you or your loved one is experiencing only one of these symptoms, it’s well worth your time to schedule an appointment with a doctor.

The tremor will look like a slight shaking of the hand, finger, thumb, or chin. Commonly, the tremor will occur during rest in the early stages of the disease. It is sometimes called the “rolling pill” tremor, because if a person rests a pill in their open palm and it rolls, the hand may be experiencing a tremor.

Other common early signs are more subtle. Small handwriting is one of these. If a person’s writing has gotten smaller or the words are crowded together, this could indicate Parkinson’s disease.

Loss of smell is another early symptom. Have your loved one try to smell certain foods – like bananas or licorice and ask them if they are able to smell them clearly. If not, this could mean that they are suffering from Parkinson’s disease, and you should get them to the doctor for examination. 

In addition to smell, voice can be affected early on in the disease. If a person is speaking much more quietly than usual, to the point where they sound hoarse or like they are whispering, this could be a sign of Parkinson’s.

Other common early symptoms include restless sleeping, depression, constipation, stooping over, or dizziness. You might also notice that your loved one has what’s called a “masked face.” If your loved one has a constant angry or serious expression on their face, they might have Parkinson’s disease.

Parkinson’s can be misdiagnosed in the early stages – especially for patients who are not suffering from tremors or muscle stiffness. Some of the other symptoms can be misconstrued as normal parts of ageing. If you feel that your loved one might have Parkinson’s, but they weren’t diagnosed, have them see a specialist for a second opinion.

There are five common stages of Parkinson’s – although, again, not everyone goes through this disease in the same way. The following five stages are the most typical patterns of progression as observed by doctors and scientists.

In the first stage, a person has mild symptoms, such as a tremor or changes in posture or facial expressions. These symptoms won’t usually interfere with daily life. Typically, a person in the first stage will only notice tremors or movement difficulties on one side of the body.

Within three to seven years of diagnosis, most patients will notice moderate changes to these early symptoms. This means that they have officially entered stage two. Stage two of the disease, or the moderate stage, tremors and movement difficulties increase in severity.

While in stage one, zipping a jacket might have been somewhat difficult, it might now take a significant amount of time to do. A person’s posture might start to slump or droop more severely in this stage, and a person might find that their tremors and muscle stiffness have moved to both sides of the body.

A person in the moderate stage of Parkinson’s can usually still care for themselves but will take significantly more time to accomplish simple tasks. Some patients at this stage might request more help with daily activities.

Stage three, the middle stage of Parkinson’s, is the big turning point for most patients. Reflexes will decrease as will balance. A risk of falling is increased, between a patient’s struggles with balance, walking, and posture. Patients at this stage will likely need a wheelchair to get around.

A patient at stage 3 is able to maintain independence – although they will take longer to eat and get dressed and might desire a little extra help to get things done around the house and run errands.

In stage four, a person can no longer be independent. While a person can stand from a chair without extra help, they won’t be able to walk from the chair to their bed or wheelchair on their own. A patient in stage four will need help to eat, dress, bathe, and move around the house.

A person in stage five of Parkinson’s will require around the clock care. Advanced leg stiffness will make it impossible to stand or walk – and a person will require a wheelchair. If a Parkinson’s patient is also suffering from Lewy body dementia, then they might be experiencing increased hallucinations or delusions by this stage. Not everyone with Parkinson’s makes it to stage five of the disease.

While Parkinson’s disease is certainly severe, and complications from the disease are the 14th cause of death in the United States, a person with Parkinson’s can live well with the disease. Michael J. Fox is proof that people can maintain a high quality of life after diagnosis. The disease is a progressive one, but the level of progression varies from person to person – and there are some steps a patient can take to slow the progression.

Have your loved one work with their doctor to establish a treatment plan. A combination of therapies and prescription medications can help a person with Parkinson’s maintain a high quality of life. Doctors will likely prescribe dopaminergic medications, to help with the impaired dopamine neurons in the brain.

While medications cannot cure the disease, they can improve symptoms to make daily living a little easier. In addition to medications, patients should get plenty of exercise. In the early stages, it’s important to get those stiff muscles moving – so activities like biking, running, tai chi, yoga, and dance are all recommended. Exercise will help a person to maintain their balance, mobility, and activities of daily living. Exercise will also improve many symptoms.

According to Parkinson’s.org, “people with PD who start exercising earlier and a minimum of 2.5 hours a week, experience a slowed decline in quality of life compared to those who start later. Establishing early exercise habits is essential to overall disease management.”

Of course, exercise will come with its own set of challenges for Parkinson’s patients. Balance issues, trembles, muscle stiffness, and endurance can all pose challenges to exercising – but there are plenty of ways to exercise safely.

All Parkinson’s patients should consult their doctors before starting a new form of exercise and should ask for a list of recommended exercises based on their symptoms. Physical therapists will help patients with safe, specialized exercises meant to improve symptoms.

Physical therapists will often recommend a routine exercise regimen that includes aerobics and resistance training. There are also community classes in most cities meant for people living with Parkinson’s disease. These classes cover everything from dance to boxing and are catered toward improving symptoms and slowing progression in patients.

There are surgical options for patients with Parkinson’s disease. Deep brain stimulation, or DBS, is one surgical therapy that many patients can benefit from. The surgery works by implanting an electrode into the affected area in the brain. The electrodes are then stimulated with a device located under the skin in the chest. This allows brain to control movement at a “normal” level.

DBS is not a cure for Parkinson’s, and it does not help with non-motor symptoms such as depression, loss of smell, or constipation. Before considering this surgery, be sure to get an evaluation from a movement disorder specialist. DBS is not the best choice for all patients, but a specialist will you’re your loved one determine if it’s the best choice for them.

Patients with Parkinson’s can also assemble a care team of specialists – from home nurses to occupational therapists and neurologists – to help with treatment. The more organized and structured a person’s care plan is, the better.

When considering the type of care a person with Parkinson’s needs, it’s important to think about where they will be living. From assisted living to at home care and everything in between, there are plenty of living options to consider with your loved one. To learn more about the best living options for your loved one, check out our episode on choosing the right type of care for seniors.

Because depression is a common symptom in patients with Parkinson’s, it’s important to make sure your loved one is mentally stimulated. It’s estimated that 50% of patients with Parkinson’s suffer from depression, while 40% face anxiety.

According to Parkinsons.org, “The Parkinson’s Foundation Parkinson’s Outcomes Project found that taken together, mood, depression, and anxiety have the greatest impact on health status, even more than the motor impairments commonly associated with the disease.”

Depression in Parkinson’s is a direct result of changes in brain chemistry, as the parts of the brain that control mood, energy, motivation, and sleep are impacted by Parkinson’s. Social isolation can make the depression even more severe, so make sure your loved one is engaged in social activities – from visits with the grandkids to clubs and organizations.

Make sure that your loved one has something to look forward to – whether trips to the movies or the park, visits, or a nice dinner. Having something to look forward to can help enhance a person’s quality of life and give them something positive to think about.

According to Parkinson’s.org, “the best approach” for treating depression, “is a combination of antidepressant medication, counseling, exercise, and social support.” A counselor can provide essential support and can recommend coping skills to help with positive thinking.

There are therapists and counselors who specialize in Parkinson’s Disease. Additionally, plenty of support groups exist within the Parkinson’s community. Introducing your loved one to people going through similar difficulties can help them to feel less alone in their struggle.

Caring for a person with Parkinson’s also means caring for their home. Make sure that there’s nothing at the home a person can easily trip over – like throw rugs, electric cords, or slippery floors. Clear pathways, place mats in bathtubs and showers, and arrange furniture so it’s not blocking any walkways.

If you want to provide additional support for your loved one, you can help them by volunteering to exercise with them, which will keep them motivated to exercise while allowing them a great opportunity for socialization, and something to look forward to.

Getting your loved one out of the house as often as possible is key to their happiness, also. It’s isolating to be alone in the house all the time – so any excuse to get out will be welcomed, as long as the person is feeling up to it.

While this is more difficult during the pandemic, consider taking your loved one on a walk to the park, or to an outdoor movie. You can also set up a projector in the backyard so your loved one can be outside, engaged in something fun, and comfortable.

Finally, it’s important to be patient with your loved one. Don’t rush your loved one through getting dressed, standing up, or eating dinner. Remember – they are going as fast as they can and rushing them will only make them feel more frustrated. I know that this disease can be endlessly frustrating and disheartening for family members – so make sure you have an outlet to express yourself, that’s not the person suffering. Go to friends, family, a therapist to vent frustrations, so you’re in a better state of mind to be patient with your loved one the next time you see them.

A Parkinson’s diagnosis is never easy – but with the right knowledge, preparation, and treatment plan, you can know what to expect and make the journey as positive as possible for you and your loved one.

We want to thank you for joining us here at All Home Care Matters, All Home Care Matters is here for you and to help families as they navigate long-term care issues. Please visit us at allhomecarematters.com there is a private secure fillable form there where you can give us feedback, show ideas, or if you have questions. Every form is read and responded to. If you know someone is who could benefit from this episode, please share it with them.

Remember, you can listen to the show on any of your favorite podcast streaming platforms and watch the show on our YouTube channel and make sure to hit that subscribe button, so you'll never miss an episode. Please join us next as we talk about Caring for the Caregiver.

Sources:

https://www.nia.nih.gov/health/parkinsons-disease#:~:text=Parkinson's%20disease%20occurs%20when%20nerve,brain%20chemical%20known%20as%20dopamine.

https://parkinsonsnewstoday.com/parkinsons-disease-statistics/#:~:text=United%20States,Americans%20are%20diagnosed%20with%20Parkinson's.

https://www.parkinson.org/understanding-parkinsons/what-is-parkinsons

https://www.michaeljfox.org/parkinsons-101

https://www.parkinson.org/understanding-parkinsons/10-early-warning-signs

https://www.apdaparkinson.org/what-is-parkinsons/symptoms/

https://www.healthline.com/health/parkinsons-warning-signs#4

https://www.parkinson.org/Understanding-Parkinsons/What-is-Parkinsons/Stages-of-Parkinsons

https://www.healthline.com/health/parkinsons/stages#4

https://www.bannerhealth.com/healthcareblog/teach-me/the-5-stages-of-parkinsons-disease

https://www.parkinson.org/Understanding-Parkinsons/Treatment

https://www.apdaparkinson.org/what-is-parkinsons/treatment-medication/

https://www.apdaparkinson.org/what-is-parkinsons/treatment-medication/deep-brain-stimulation/

https://www.parkinson.org/Living-with-Parkinsons/For-Caregivers/Beginning-Your-Journey-with-Parkinsons/Special-Challenges-of-Caring-for-Someone-with-Parkinsons

https://www.webmd.com/parkinsons-disease/guide/parkinsons#1

https://www.agingcare.com/articles/daily-caregiving-for-someone-with-parkinsons-disease-119724.htm

https://www.healthline.com/health/parkinsons-disease/how-to-support#8.-Be-patient

https://www.webmd.com/parkinsons-disease/guide/parkinsons-disease-progression#2

https://www.parkinson.org/Understanding-Parkinsons/Treatment/Exercise#:~:text=Biking%2C%20running%2C%20Tai%20chi%2C,on%20your%20symptoms%20and%20challenges.

https://www.parkinson.org/Understanding-Parkinsons/Symptoms/Non-Movement-Symptoms/Depression

When our loved one is diagnosed with dementia, we want to do our best to understand exactly what they’re going through. The more we know, the more support we can offer – both emotionally and in regard to long-term care support. We’ll also be better equipped to help ourselves. Knowing what to expect as dementia progresses, and understanding why our parent, spouse, or grandparent is behaving in certain ways can help us manage and care for our own feelings.

There are over four hundred types of dementia out there – so it’s important not to generalize dementia as one single disorder. Once you know what type of dementia your loved one has, you can look at that variant through a closer lens, so you can focus on providing your loved one with specified care to match their individual needs.

Today, we’re going to talk about one type of dementia that affects over one million people in the United States each year. That’s Lewy body dementia – or LBD. LBD usually sets in around age 50, although it can occur earlier. There are two diagnoses of the disorder – dementia with Lewy bodies, or DLB, and Parkinson’s disease dementia.

By examining LBD in both of its forms, we can have a much clearer understanding of what our loved one is struggling with – and how to help them. After all, LBD is quite different from Alzheimer’s or other forms of dementia, so we want to make sure we’re not grouping these disorders together. We’ll talk about the signs and symptoms of LBD, what to expect as the disease progresses, and possible care and treatment options.

First, it’s important to understand what Lewy bodies are. First discovered by Dr. Friederich Lewy in 1912, Lewy bodies are abnormal protein deposits that form clumps inside neurons, causing neurons to lose function and die. The clumps first form in the parts of the brain that control memory and movement – but as time goes on, the damage spreads to other regions. In all, Lewy bodies can form in the cerebral cortex, the limbic cortex, the hippocampus, the midbrain and basal ganglia, the brain stem, and the olfactory pathways.

The cerebral cortex controls language, thought, and information processing. The limbic cortex dictates emotions and behavior. The hippocampus is where new memories form. The midbrain and basal ganglia control movement. The brain stem regulates sleep. The olfactory pathways control the sense of smell.

To learn more about how exactly LBD affects the brain, listen to our episode that discusses and examines the different types of dementia.

Clearly, LBD is a devastating disorder. It can be extremely hard to watch a loved one fall victim to a progressive brain disease. That’s why it’s so essential to prepare yourself – so that you can minimize unwanted surprises down the road and be there for your loved one every step of the way.

Scientists are unaware of what exactly causes LBD, but they do know that the dying neurons result in a failure of messages to be sent through brain cells. Without these messages, memory, learning, behavior, cognition, mood, and movement are all affected.

LBD is common in patients with Parkinson’s Disease. According to alz.org, 50-80% of Parkinson’s patients experience dementia. The most common form of dementia for these patients is LBD. This is most likely because people with Parkinson’s disease and LBD are both progressive diseases in which brain cells are lost after protein clusters are formed.

Unfortunately, LBD is commonly misdiagnosed or not diagnosed in its earliest stages. That’s because the early symptoms of the disorder can be confused with normal aging or other memory disorders, like Alzheimer’s. Still, there are some key differences to look out for.

Remember, every person responds differently to LBD, so while some people might have every symptom, others may only have some. The severity of these symptoms also varies from person to person. Because of this, whether you notice any or all of these symptoms in your loved one – and regardless of the severity – you should take your loved one to the doctor if you think there’s a chance, she might have LBD.

Among the early symptoms of LBD are physical issues – which is one standout difference between LBD and other forms of dementia. A person with LBD might have a tremor, or struggle with their fine motor skills. Try to notice if your loved one has difficult lifting utensils at dinnertime, or if their arm trembles when they rest. In addition, they could have trouble keeping their balance or lose coordination.

Sometimes the physical symptoms are more subtle. Has your loved one’s facial expressions become less animated and more rigid? Is your loved complaining of muscle stiffness? Has their posture become stooped? You can also look for signs in their handwriting. If their handwriting is smaller, or shakier, than usual – this can be a sign of LBD.

In addition to physical changes, look out for cognitive changes in your loved one. If your loved one is suffering from delusions or hallucinations, that’s an extremely common sign of LBD. She might also seem confused or have trouble interpreting visual information. Her alertness could vary drastically from one day to the next. She could also be experiencing memory loss and have trouble with judgement and planning. Patients with LBD will also have trouble recognizing familiar people earlier on than in other stages of dementia – like Alzheimer’s. 

A doctor will diagnose LBD in a patient who is suffering from both the physical and cognitive symptoms of the disorder. Even if they do not begin at the same time, as long as the physical symptoms begin within a year of the cognitive ones, or vice versa, doctors will likely give a diagnosis of LBD. LBD is a clinical diagnosis, which means that a diagnosis is not determined from a test, but from the doctor’s best judgement based on the information available.

In the early stages, LBD is commonly misdiagnosed as Alzheimer’s – especially if a person is not struggling with the physical symptoms quite yet. There are key differences between the disorders to look out for. In Alzheimer’s disease, memory loss tends to be more prominent earlier on than in LBD. For patients experiencing LBD, changes in judgement, planning, and visual perception usually occur before memory loss.

Movement is a huge difference. While Alzheimer’s does affect walking and balance as time progresses, immediate mobility issues are more prevalent in patients with LBD. If your loved one was diagnosed with Alzheimer’s, but primarily struggles with tremors and balance issues, you might want to consult your doctor about a new diagnosis. 

Hallucinations and delusions are also more common in LBD patients, especially early on. They might see people in the house or misinterpret objects for something else. On MichaelJFox.Org, Ava Butler kept a daily journal of her husband’s, who had LBD, hallucinations. “The plants on the south balcony turned into little children,” she writes, “Today they are musicians and they played for everyone down below. People danced to their music.”

An LBD patient might have trouble recognizing familiar faces right away. Butler writes that her husband sometimes mistook her for his brother, or even forgot his own name. These symptoms occur earlier on in patients with LBD than they do in patients with Alzheimer’s.

Once you understand the key differences between Alzheimer’s and LBD, you can determine if you believe they have been misdiagnosed. If you think they have, take them back to the doctor and re-examine the signs and symptoms together. Receiving the correct diagnosis is important for many reasons – from assuring that your loved one is taking the proper medications to knowing the best type of care for your loved one.

The proper medication is especially important. While antipsychotics might be prescribed to a person with Alzheimer’s to control their behavior, a person with LBD could suffer from severe side-affects from the same medications. Their movement might become even worse, and they could get fevers or even kidney failure. Be sure that your loved one’s doctor has evaluated your loved one for LBD before prescribing any anti-psychotics.

As LBD progresses, many of the symptoms will look similar to middle or late-stage Alzheimer’s disease. You might notice significant mood changes in your loved one – they could become easily agitated or paranoid.

In the early stages of LBD, your loved one will likely struggle with hallucinations or delusions. They could also have tremors and difficulty with basic movements. A person with LBD could get “stuck” in the middle of a movement, as their muscles completely stiffen. While their memory will be mostly intact, they will likely suffer from confusion and difficulty processing information or recognizing familiar faces.

In the middle stages of Lewy body dementia, a patient will suffer from extreme motor impairment, decreased attention, and significant confusion and paranoia. You will notice that your loved one is having more difficulty speaking and swallowing, and that the hallucinations might be becoming more severe. At this stage, it’s essential that your loved one has a caregiver present at all times. This is because the risk of falls is increased and hallucinations and confusion could lead to rash decision making, violent behavior, or wandering from the house.

In the later stages of Lewy body dementia, your loved one might experience extremely stiff muscles that are sensitive to touch. They might not be able to speak at all, or only in whispers. They will need help with all activities of daily living – from eating to bathing to getting dressed.

A person with LBD is likely to live five to seven years after a diagnosis. However, some patients have lived up to 20 years with the disorder.

There are many ways to provide care and support to your loved one with LBD. In addition to determining the best possible care (you can learn about care options in our episode on choosing the right care for your loved one), researching the disorder, and creating a care and medication plan with your loved one’s doctors, you can also act as a support system for them.

Include your loved whenever you can. Take them to the movies, religious services, and out to eat. In the pandemic, this might translate to movie nights at home and Zoom church meetings or picnics in the park. The important thing is to make your loved one feel included and surrounded by people they love. Social interaction with family will brighten your loved one’s mood and keep them from feeling isolated or depressed as they face this new diagnosis. Even as LBD progresses, include your loved one as much as possible. While they might not be able to communicate, they will still enjoy the company.

Be sympathetic to your loved one’s diagnosis. When your loved one hallucinates, don’t shut down his vision outright. Respect what he is seeing and remind him that he is safe, and he is loved. Ava Butler writes, “dismissing his reality is not helpful, and can actually make it appear that I am not trustworthy…remind him that we are safe, and that everyone is on our side…Ask him to look in my eyes. This can help ground him. Remind him that I love him…However if I’m part of the hallucination and am perceived to be involved in some conspiracy, I need to back off and give him space…ask him to describe what he sees. Sometimes this causes him to focus a bit more. What he sees can give me insight into how he is feeling.”

Butler also recommends turning negative into positive – if your loved one thinks they see a bad guy, acknowledge that the person “looked bad” but is actually good and there to help him stay safe. Finally, it’s important to stay calm, cool, and collected. Showing your own frustration or anger will only heighten the situation and make it worse.

Improving the quality of life for an LBD patient might include hiring physical therapists to assist with movement difficulties, speech therapists to help with swallowing and voice problems, occupational therapists to help with everyday activities, and mental health counselors to help with difficult emotions.

Music and art therapy can also help your loved one with their anxiety and give them something to look forward to that will keep them calm and feeling positive.

With over 400 types of dementia, it can be hard to pinpoint exactly what your loved one is suffering from. Once you have a clear diagnosis, though, you can begin individualized treatment and care. If your loved one has been diagnosed with LBD – or if you suspect they might be suffering from it – see your doctor right away and develop a treatment plan together.

It can be devastating to receive this diagnosis – but with the right research and proper care plan, you and your loved one can be as prepared as possible for the road ahead.

We want to thank you for joining us here at All Home Care Matters, All Home Care Matters is here for you and to help families as they navigate long-term care issues. Please visit us at allhomecarematters.com there is a private secure fillable form there where you can give us feedback, show ideas, or if you have questions. Every form is read and responded to. If you know someone is who could benefit from this episode, please share it with them.

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Sources:

https://www.nia.nih.gov/health/what-lewy-body-dementia#:~:text=Lewy%20body%20dementia%20(LBD)%20is,movement%2C%20behavior%2C%20and%20mood.

https://www.healthline.com/health/dementia/lewy-body-dementia#symptoms

https://www.verywellhealth.com/lewy-body-dementia-stages-progression-98735

https://www.lbda.org/10-things-you-should-know-about-lbd/

https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia/lewy-body-dementia

https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/how-dementia-progresses/progression-dementia-lewy-bodies

https://www.nia.nih.gov/health/how-care-person-lewy-body-dementia

https://www.thememorycenter.com/how-to-care-for-someone-with-lewy-body-dementia/

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https://www.nia.nih.gov/health/what-lewy-body-dementia#:~:text=Lewy%20body%20dementia%20affects%20more,slightly%20more%20men%20than%20women.

https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia/parkinson-s-disease-dementia

https://www.michaeljfox.org/news/ask-md-what-lewy-body-dementia

https://www.michaeljfox.org/news/what-richard-sees-insight-lewy-body-dementia-hallucinations