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Did you know that as many as 1 in 4 people who have Parkinson’s Disease are misdiagnosed? Even worse, those with the disease may have seen a doctor three or more times before receiving an accurate diagnosis. Too often it’s diagnosed as Alzheimer’s in older patients. We all need to be aware of this, for ourselves and those around us.
In this episode, our guest expert, Dr. Michael Okun, is a leading expert in the research and treatment of Parkinson’s disease (bio details at the end of these show notes).
Dr. Okun has a unique way of working with patients and lives by the mantra that “the medical profession should look at the patient as the sun: everything done to help patients should revolve around their needs, just like our entire solar system revolved around our sun.” This goes for doctors, hospitals, caregivers, therapists, families, and all their entire teams. He further states: “if we all work this way with each and every patient, then our abilities to work towards a cure and build a better quality of life for that person will prevail.” He believes that the greatest indicator of success is not how much money one raises for a cure, but how many lives can we all save!
You’ll find this discussion is rich with words of wisdom and advice for patients, families, caregivers, and everyone in the medical and healthcare community. Some (maybe) startling points worth noting include:
He shares the difference between the early symptoms of Parkinson’s vs. Alzheimer’s and why it’s more frequently misdiagnosed and mistreated. Including:
Some other points we discuss include :
Do listen to the full episode as this one is rich beyond expectations! Tune in and share with your family and friends.
Additional links of value:
Guest: Dr. Michael Okun, is a neurologist, neuroscientist, and author. He is the co-founder and director of the Norman Fixel Institute for Neurological Diseases at the University of Florida and is the chair of the Department of Neurology at the University of Florida (2015-current) and the Medical Director/Advisor for the Parkinson’s Foundation (2006-current). He is best known for his work in translating physiological principles underpinning human diseases, such as Tourette syndrome, tremor and Parkinson's into real-world therapies. He received his M.D. with honors from the University of Florida. For more details about Dr Okun's work and practice please go to this link. Dr. Michael Okun Bio
Host: Nancy May, Author of How to Survive 911 Medical Emergencies, Step-by-Step Before, During, After! is an acknowledged expert in managing the path of step-by-step caring for aging parents, even from over 1200 miles away. For a free, fillable File-of-Life go to www.howtosurvive911.com. Nancy is also the Co-Founder of CareManity LLC, and the private FaceBook group, Eldercare Success.
Disclaimer: The views, perspectives, and opinions expressed in this show are those of the show guests and not directly those of the companies they serve or that of the host or the producer CareManity, LLC. The information discussed should not be considered or used as medical, legal, or financial advice. Please seek the advice of your own personal medical, legal or financial advisors as each person’s situation is different. (c) Copyright 2022 CareManity, LLC all rights reserved.
CareManity is a trademark of CareManity, LLC.
Finding good aides, or a health care agency isn’t easy. In this episode, I disclose some key points to make your caregiving life easier, especially when it comes to hiring aides as well as knowing when and how to let them go -- even if they’re with an agency.
While I’m at it, I recommend that everyone in your family and all those caring for your parents learn CPR. Below is a link to where you can find a local program. When checking these out, make sure that the course instructor covers CPR for older, frailer, adults, as their bodies require special care and pressures when applying resuscitation.
Key tips for hiring an aide. . . Look for:
The care needs of your parents will change over time. Whether an aide is able to step up and adjust to those changes, should be a major concern. When times change, and your aide can’t, it may be time to find a new aide.
Finally, I always recommend that all family members keep looking for good aides, even if you have a team in place that you trust. Aides are human: they have their own needs and situations, which will change over time. Some will resign on you, no matter how well you treat them. You always want to have the support your loved ones need, when they need it.
Host: Nancy May, Author of How to Survive 911 Medical Emergencies, Step-by-Step Before, During, After! is an acknowledged expert in managing the path of step-by-step caring for aging parents, even from over 1200 miles away. For a free, fillable File-of-Life go to www.howtosurvive911.com. Nancy is also the Co-Founder of CareManity LLC, and the private FaceBook group, Eldercare Success.
Disclaimer: The views, perspectives, and opinions expressed in this show are those of the show guests and not directly those of the companies they serve or that of the host or the producer CareManity, LLC. The information discussed should not be considered or used as medical, legal, or financial advice. Please seek the advice of your own personal medical, legal or financial advisors as each person’s situation is different. (c) Copyright 2022 CareManity, LLC all rights reserved.
CareManity is a trademark of CareManity, LLC.
Many of us as caregivers often feel isolated and alone. When this happens it may be tough to overcome, even when surrounded by those who care about us and want to help. It’s tough enough to deal with this ourselves. It’s even tougher when we try to shield others from that sense of emptiness, we sometimes feel or let them think they’re being ignored or abandoned by us.
Loneliness and all the other emotions of caregiving have gotten increasingly sharper these past few years, especially as travel and gatherings were curtailed in our lives almost altogether. Thankfully the world is starting to open up again.
In this episode, we tackle this issue and share some tips and ways to help you:
If you ever feel like you're caring for someone you love all by yourself. Reach out to me, and all of us in the Eldercare Success group on FaceBook. Together we help each other become, and stay strong.
Host: Nancy May, Author of How to Survive 911 Medical Emergencies, Step-by-Step Before, During, After! is an acknowledged expert in managing the path of step-by-step caring for aging parents, even from over 1200 miles away. For a free, fillable File-of-Life go to www.howtosurvive911.com. Nancy is also the Co-Founder of CareManity LLC, and the private FaceBook group, Eldercare Success.
Disclaimer: The views, perspectives, and opinions expressed in this show are those of the show guests and not directly those of the companies they serve or that of the host or the producer CareManity, LLC. The information discussed should not be considered or used as medical, legal, or financial advice. Please seek the advice of your own personal medical, legal or financial advisors as each person’s situation is different. (c) Copyright 2022 CareManity, LLC all rights reserved.
CareManity is a trademark of CareManity, LLC.
What happens when your mom or dad thinks their jewels have been stolen?
It’s frightening when one of your parents believes that a wedding ring, piece of jewelry, or something precious was stolen. Unfortunately, some of our loved ones, with fading memories, will sometimes accidentally toss away or accidentally lose a family heirloom or keepsake. Hands and fingers can shrink with age, or swell with l arthritis, weight gain, or water retention, making wearing precious things uncomfortable.
Yet their fears can easily spread to us. Were they really robbed? Whom do I trust? What else is missing? How can I find the lost items? Do we call the police?
To prevent worrying about what might happen, consider having replicas made of important personal jewelry. If losing such items is not something you can bear, and you can afford something a bit less expensive, consider duplicates that your parents can hold onto. Many rings, earrings, bracelets, or other family pieces can be replicated in low-cost materials, such as cubic zirconia, or plated metals. Getting this done can be quite reasonable, and you’d be surprised how real they look.
We did this for my mom with her wedding and engagement rings. The resulting replicas were better than I could have imagined. More of that story is laid out in this episode.
If you go this route, make sure you’re working with a reputable jeweler as you’ll want to show them the items you want to be duplicated. This may mean handing over pieces for a few days or weeks. If that’s the case, and mom or dad asks “where are my rings” simply share that they’re being repaired.
Here’s a link to Sonya Taheri and Wilton Campus Jewelers, the shop that helped me create beautiful replicas of mom’s wedding rings. Sonia helped me on many occasions with repairs, appraisals for insurance, and more. I recommend her 110%. I’ve also noted two other places you might want to investigate for creating family jewelry replicas. I’m not personally familiar with their work, however.
Wilton Campus Jewelers on FaceBook
Serendipity Diamonds: replica rings for travel and other needs.
Cubic Zirconia: Make your own designs
Host: Nancy May, Author of How to Survive 911 Medical Emergencies, Step-by-Step Before, During, After! is an acknowledged expert in managing the path of step-by-step caring for aging parents, even from over 1200 miles away. For a free, fillable File-of-Life go to www.howtosurvive911.com. Nancy is also the Co-Founder of CareManity LLC, and the private FaceBook group, Eldercare Success.
Disclaimer: The views, perspectives, and opinions expressed in this show are those of the show guests and not directly those of the companies they serve or that of the host or the producer CareManity, LLC. The information discussed should not be considered or used as medical, legal, or financial advice. Please seek the advice of your own personal medical, legal or financial advisors as each person’s situation is different. (c) Copyright 2022 CareManity, LLC all rights reserved.
CareManity is a trademark of CareManity, LLC.
What are Death Panels? Are they real?
Decisions to provide, or not provide life-saving care to an elderly patient, while not specifically publicly called “Death Panels,” happen far more often than many realize. I’ve had a number of discussions with healthcare professionals who have shared how and when such decisions on who they try to save, and who they choose not to. These decisions are often made by medical groups, but sometimes by others, and seem to become more visible during disasters, emergencies, and other times of social stress. The book Five Days at Memorial highlighted examples of such decisions made right after Hurricane Katrina. With the recent pandemics, lockdowns, and other political and societal upheavals, decisions on who should be helped may have also been based on their ages, physical conditions, and family situations -- more than we might ever know.
Once you are told that continued life support or life-saving measures will (or will not) be made for your loved one(s), you face your own decisions. Those are to either accept what you’re told and let others decide on whether or not extraordinary measures should be taken, or exercise your right to speak up and push for your loved one’s end-of-life wishes.
I’ve made both types of continuing life support decisions for my own parents, in their end years. My dad wanted to push forward and hold on as long as he could - 120 years was his goal. My mom told me that this wasn’t her desire. As such, I did my best to make sure that doctors understood and accepted what they wanted.
If you know the personal life wishes of those you’re caring for, then when their final days come, you’ll likely have fewer regrets about how you advocated for them.
Related articles:
Rules
Host: Nancy May, Author of How to Survive 911 Medical Emergencies, Step-by-Step Before, During, After! is an acknowledged expert in managing the path of step-by-step caring for aging parents, even from over 1200 miles away. For a free, fillable File-of-Life go to www.howtosurvive911.com. Nancy is also the Co-Founder of CareManity LLC, and the private FaceBook group, Eldercare Success.
Disclaimer: The views, perspectives, and opinions expressed in this show are those of the show guests and not directly those of the companies they serve or that of the host or the producer CareManity, LLC. The information discussed should not be considered or used as medical, legal, or financial advice. Please seek the advice of your own personal medical, legal or financial advisors as each person’s situation is different. (c) Copyright 2022 CareManity, LLC all rights reserved.
CareManity is a trademark of CareManity, LLC.
This episode is about how to get your parents, or a frail spouse, to give up driving.
This is a sticky subject for many families and such conversations often erupt in anger. Trust between you and your parents can wind up strained and your own frustrations and doubts pushed to the limits.
Some families resort to lies, big and little ones, to get their parents to stop driving. However, once they discern that you’re lying, or trying to, that bond of trust between you all may never recover. As a consequence, your caregiving days will grow more difficult.
If they’ve agreed to give up driving, and you find you need to dispose of that car. Finding someone to “take it off your hands” may not be easy, especially if it’s seen lots of wear. If it turns out it’s not worth much, consider donating it to a local vocational school where students can practice repairs. Or donate it to a charitable organization like Kars4Kids, Veterans Car Donation, Make A Wish, or Habitat for Humanity - Car Donation. If the car still has some value, contact We Buy Any Car. This organization will buy used vehicles for anything from $100 to $100,000! If the registered owner of the car has already passed, you can try asking the family’s estate attorney to help transfer ownership. However, this may be through probate if you’re not a beneficiary.
Finally, if you’re just starting down this road (pun intended) a little empathy will serve you well in moving the conversation in a positive direction.
Listen in for more details on how to get things done.
Host: Nancy May, Author of How to Survive 911 Medical Emergencies, Step-by-Step Before, During, After! is an acknowledged expert in managing the path of step-by-step caring for aging parents, even from over 1200 miles away. For a free, fillable File-of-Life go to www.howtosurvive911.com. Nancy is also the Co-Founder of CareManity LLC, and the private FaceBook group, Eldercare Success.
Disclaimer: The views, perspectives, and opinions expressed in this show are those of the show guests and not directly those of the companies they serve or that of the host or the producer CareManity, LLC. The information discussed should not be taken as medical, legal, or financial advice. Please seek the advice of your own personal medical, legal or financial advisors as each person’s situation is different. (c) Copyright 2022 CareManity, LLC all rights reserved.
CareManity is a trademark of CareManity, LLC.
How do you know if you’re heading into a Burnout?
Some professionals say there are three stages leading to burnout. Here, you’ll learn there are really 12 stages. Each shows we’ve sunk a little deeper toward the bottom. Surprisingly, knowing whether you’ve reached your limit might not be obvious. Learn how to identify if you’re facing burnout and when it’s too late to get out without needing medical help.
As caregivers we’re often exhausted at the end of a day: the emotional and physical strain and stress take their toll, bit by bit. Yet, sometimes we think that how we’re feeling is just part of the job. We think it will eventually ease up, or go away when our charge passes or goes into a care facility.
If you’re caring for someone outside the home, the strain can be worse. If your employer doesn’t understand what it’s like to be a caregiver for someone, they might not understand how this could impact your work performance -- which it often does. It’s the rare individual who can burn the candle at both ends and still remain physically and mentally strong.
In this episode of Summer Shorts, Eldercare Success style we also dive into how to get the support you need at work from your employer and your peers.
Here's an article that is of value to any caregiver, but especially if you're employed outside the home.
Guest: Sharon Aneja is a Positive Psychology coach, wellbeing consultant, and founder of Humanity Works Consultancy. She helps organizations put out the flames of burnout through her signature energizer program. She also founded Recharge@Work and is a UN Women UK Delegate for the Commission on the Status of Women. Sharon and her Humanity Works team’s focus is to help you maximize your organization’s people-first approach through their Positive Psychology coaching, training, and consultancy services.
Host: Nancy May, Author of How to Survive 911 Medical Emergencies, Step-by-Step Before, During, After! is an acknowledged expert in managing the path of step-by-step caring for aging parents, even from over 1200 miles away. For a free, fillable File-of-Life go to www.howtosurvive911.com. Nancy is also the Co-Founder of CareManity LLC, and the private FaceBook group, Eldercare Success.
Disclaimer: The views, perspectives, and opinions expressed in this show are those of the show guests and not directly those of the companies they serve or that of the host or the producer CareManity, LLC. The information discussed should not be taken as medical, legal, or financial advice. Please seek the advice of your own personal medical, legal or financial advisors as each person’s situation is different. (c) Copyright 2022 CareManity, LLC all rights reserved.
CareManity is a trademark of CareManity, LLC.
“Final Wishes” conversations don’t always have to be difficult. Some people believe such discussions create “bad mojo” or push the inevitable forward. However, they can be somewhat fun, especially if turned into a travel-type game.
In this episode of Summer Shorts, I dive into some easy ways for you and your loved ones to lay things out for when that time comes. Sharing your wishes, and outside legal documents, can make caregiving a bit easier, when you know what, how, and when to make such difficult decisions. It moves us, caregivers, away from later heartaches when that time comes, while allowing for more time to celebrate life, now.
It’s important not to wait to have these conversations because attorneys can’t legally accept someone’s signature on a document when they’re later determined not to be of sound mind and body. Besides, one can learn so much more about family history, quirky growing-up stories, traditions, and special treasures you never knew about, while memories are fresher. It’s good to understand who gets grandma’s keepsakes or grandpa’s favorite watch, or the family photos and books. These small bequests often mean more to some than most bigger things.
Discussions should be had, and decisions made on when to enter into Hospice, being kept on life support, getting CPR and intubated, etc. They are best known before things happen and there’s no time. These things will eat at your heart, as a caregiver, if you don’t know or make the wrong call.
Here are some books/tools to get you started.
Host: Nancy May, Author of How to Survive 911 Medical Emergencies, Step-by-Step Before, During, After! is an acknowledged expert in managing the path of step-by-step caring for aging parents, even from over 1200 miles away. For a free, fillable File-of-Life go to www.howtosurvive911.com. Nancy is also the Co-Founder of CareManity LLC, and the private FaceBook group, Eldercare Success.
Disclaimer: The views, perspectives, and opinions expressed in this show are those of the show guests and not directly those of the companies they serve or that of the host or the producer CareManity, LLC. The information discussed should not be taken as medical, legal, or financial advice. Please seek the advice of your own personal medical, legal or financial advisors as each person’s situation is different. (c) Copyright 2022 CareManity, LLC all rights reserved.
CareManity is a trademark of CareManity, LLC.
Do people with dementia see the color white?
The other day a professional caregiver friend of mine told me that those with dementia have difficulty with the color white. Although skeptical, this statement piqued my interest. However, with some research, I found out more about this, and although there’s some truth there, it isn’t exactly correct.
Over time changes occur in the brain of those afflicted with dementia. Some become more challenged than others in detecting shapes of the same hue. In this episode, we dive into this a bit more, including how cognitive impairments impacted the world-famous artist, William de Kooning, as well as my good friend, and renowned kinetic sculptor Walter Einsel. After sustaining some stroke-involved brain damage, Walter used the book Drawing from the Right Side of the Brain to retrain his hands and mind to draw and work again.
Art can also be a wonderful tool for our loved ones as they grow frailer. We’ll share more tips on how art can be very therapeutic, and the joy of gaining special keepsakes that your loved ones can create.
Here are some tools and resources to help spark creativity:
Michael’s Art Supply Store will price match any other advertised price. If you’re in the store and know of a price that’s lower elsewhere, show them the advertisement and you’ll get the discount. Also, if you sign up for their free membership, you’ll get weekly updates on coupons and other price discounts.
So that you and your new artists feel the part: a French (artist’s) beret. I bought several of these for mom in different colors. She loved them and they stirred up memories of the beige one she wore when we were growing up on Long Island.
If paints are too much for you, as a caregiver to manage, consider adult coloring books. Here are a few links to some fun, beautiful options, and coloring pens.
Coloring pens. Many are small in width and difficult for anyone with neuropathy or arthritis to grip. The set below has an extra large barrel to aid with this physical dexterity challenge.
Market drawing pad. This pad is supposed to eliminate the problem of marker pens bleeding through the paper to the next page. Bleed-through can waste paper and some of these pads are expensive. This one is a rather reasonable price and you'll be able to use every single page!
Host: Nancy May, Author How to Survive 911 Medical Emergencies, Step-by-Step Before, During, After! is an acknowledged expert in managing the path of step-by-step caring for aging parents, even from over 1200 miles away. For a free, fillable File-of-Life go to www.howtosurvive911.com. Nancy is also the Co-Founder of CareManity LLC, and the private FaceBook group, Eldercare Success.
Disclaimer: The views, perspectives, and opinions expressed in this show are those of the show guests and not directly those of the companies they serve or that of the host or the producer CareManity, LLC. The information discussed should not be taken as medical, legal, or financial advice. Please seek the advice of your own personal medical, legal or financial advisors as each person’s situation is different. (c) Copyright 2022 CareManity, LLC all rights reserved.
CareManity is a trademark of CareManity, LLC.
Have you ever worried about taking a road trip with a loved one suffering from dementia? If so, this show is for you!
You don’t have to restrict outings with them just to doctor visits. Always staying in can be tough on you and even more so for those you’re caring for.
Trust me on this one!
This episode’s tips come from one of our listeners: Polly. She shares her stories about how she takes her husband, who’s suffering from Leukodystrophy (a rare form of dementia) on special road trips. Although he’s lost some basic functions, he still seems to understand what’s going on around him.
Listen in and learn what Polly’s been doing to help her husband, and herself, through both good and tough days. You’ll also hear my story about how my own dad and I used to take long day trips together and get lost together in the Florida swamps.
In the meantime, here are some items that may make things easier and safer while you enjoy your own trips:
Host: Nancy May, Author How to Survive 911 Medical Emergencies, Step-by-Step Before, During, After! is an acknowledged expert in managing the path of step-by-step caring for aging parents, even from over 1200 miles away. For a free, fillable File-of-Life go to www.howtosurvive911.com. Nancy is also the Co-Founder of CareManity LLC, and the private FaceBook group, Eldercare Success.
Disclaimer: The views, perspectives, and opinions expressed in this show are those of the show guests and not directly those of the companies they serve or that of the host or the producer CareManity, LLC. The information discussed should not be taken as medical, legal, or financial advice. Please seek the advice of your own personal medical, legal or financial advisors as each person’s situation is different. (c) Copyright 2022 CareManity, LLC all rights reserved.
CareManity is a trademark of CareManity, LLC.
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