Caregivers suffer from Alzheimer’s too. In Episode 13 of Alz In The Fam, the four Fair siblings discuss how their mom’s Alzheimer’s disease affects each of them.

Following a resource from the Alzheimer’s Association, the siblings dive into the stages of grief that caregivers often face - denial, anger, guilt, sadness and acceptance. At each stage of grief, the siblings share their experiences with the emotion and how, or if they have overcome it.

A major stage for all four siblings was guilt. They feel guilty about not being able to do enough for their mom, not being able to spend enough time with their mom, for their anger and frustration with the disease, and much more.

COVID-19 has also put a wrench in the Fair family’s care for their mom, as it has for many families. The effects of COVID-19 have definitely increased the feeling of anger and sadness that each sibling feels.

Ultimately, all four siblings are moving towards acceptance. While it is hard to accept the fate of Alzheimer’s, acceptance has helped the Fair family move forward and keep fighting for their mom.

One thing for the Fair family is certain – every day is the best it’s ever going to be. Each day may get harder than the last, but the family is in It together. Allan, Poli, Trissi and Boni are grateful every day to have siblings who are there to support them.

Caring for a loved one with Alzheimer’s is very emotionally taxing, but the emotional health of caregivers is not often considered. If you know of any caregivers, remember to check in on them.

If you are a caregiver, check out Alzheimer’s Association’s resources on caregiver health, such as the article referenced in this show: https://www.alz.org/help-support/caregiving/caregiver-health/grief-loss-as-alzheimers-progresses

If you enjoy the podcast, would you please consider leaving a short review on Apple Podcast/iTunes?

In Episode 12 of Alz In The Fam, the four Fair siblings discuss COVID-19 and its ongoing effects on Memory Care Facilities. Due to COVID-19, many of the residents of these facilities are facing severe and damaging isolation, such as their mom.

To protect the health of the residents, Memory Care Facilities, like their mom’s, are taking extra precautions to shield residents and staff from sickness. These precautions, however, have a negative effect on the residents.

As the Fair siblings state, their mom was moved into a senior living community to avoid the isolation that many seniors face when living alone. The pandemic, however, has left their mother isolated, confused and uncomfortable.

Since March, the Fair family have only been able to see their mom in person once. All other communication is done over Facetime, which puts a strain on the communication they have with their mom.

When their Mom’s Memory Care facility did open again, after all staff and residents had two consecutive negative tests, it only opened for outdoor visits in the extremely hot and humid July weather. Two days later, a staff member tested positive and the facility shut down again. Allan has been unable to see his Mom in person for more than six months. 

The Fair siblings are not allowed to take their mom out for family gatherings or for excursions to the hair or nail salon, or for a walk. These outings were a way for the siblings to take care of their Mom and give her a chance to socialize or enjoy a change of scenery.

It is devastating to the Fair family that they cannot hug their Mom. And because they cannot visit her inside or take her for outings, the siblings are constantly worried about how well her hygiene is being monitored. They also worry if their Mom recognizes herself with her now gray hair.

So many residents passed away during the COVID-19 shutdown that the Fair sibling’s Mom had to be moved to a new room and floor in her facility. Her floor lost more than half of its residents to COVID-19 or complications of other diseases exacerbated by COVID. The siblings are worried about their Mom adjusting to a new room and bed especially with the challenge of advanced Alzheimer’s Disease. This transition has been difficult on their mother, and the siblings can see how upset it has made her.

Their mom is still unable to go for outdoor walks due to COVID-19, causing her to gain weight, and has suffered from the extreme isolation required to bring the COVID-19 outbreak under control.

The siblings discuss how difficult it is to have their Mom at a senior facility with all the measures in place to preserve and protect their Mom’s physical health. They debate how on the one hand this helps to prolong her life and the lives of other residents and staff, but on the other hand it is prolonging a now sad and lonely time for their Mom. For similar reasons, the siblings also debate signing off on the flu shot for their mother given their Mom’s history of refusing the shot. 

Poli and Allan also discuss how Coronavirus patients with dementia in the U.S. who are hospitalized, are not allowed to have a caregiver go with them. When they were guests on “The D Word” radio show Allan and Poli learned that the UK has a rule that requires hospitals to allow a caregiver to join dementia patients in the hospital.

The Fair siblings hope that Memory Care Facilities can find a balance that will help families and their loved ones reconnect, while still maintaining the safety of all parties involved. They hope, more than anything, that they can give their mom a hug soon.

In Episode 11 of Alz In The Fam, Allan and Poli detail the final steps of receiving our Mom’s official diagnosis of Alzheimer’s disease. The steps we took at this stage, starting with an appointment with our Mom’s primary care physician, all culminated in finding great treatment and resources for our Mom.

When we first went to Mom’s primary care physician, Mom took the Mini Mental Status Exam – a standard exam with a series of questions that help health professionals evaluate the memory issues in their patients. Mom failed this exam, but the assistant who administered the test thought Mom was fine. Her physician decided to refer us to a neurologist. 

Neurologists, however, are incredibly busy. Getting an appointment took a lot of time, but Poli was directed to the Georgetown University’s Memory Disorders Program and was able to get Mom in for an appointment sooner than most.

Getting involved at the GU Memory Disorders Program proved to be the best move we could have made. Here, we enrolled Mom in an Alzheimer’s study and started being seen by a neurologist every month. Joining a study was the best experience for our family; it provided us with tons of resources and incredible staff that we can still rely on.

Our start at GU Memory Disorders Program gave Mom her first official diagnosis of mild Alzheimer’s disease, too. This was a huge milestone in our journey. GU has provided us with crucial care and a strong community, both of which have made a huge impact in our Mom’s life and our entire families’ lives.

Finally, we just want to note that no experience with Alzheimer’s is linear. Some days are much harder than others, and some days your loved one may seem like her old self again. Being a caregiver is difficult and unpredictable; having a support system and community to rely on is crucial as caregivers. We hope that those in a similar position can find care that they feel confident about and a community that they can connect with.

If you enjoy the podcast, would you please consider leaving a short review on Apple Podcast/iTunes?

In Episode 10 of Alz In The Fam, Brigid Reynolds, Neurology Provider at Georgetown University’s Memory Disorders Program joins the Fair siblings for another great episode. In this conversation, Brigid shares exciting studies and research happening in the memory disorder field.

When we first met Brigid, she recommended that our Mom joined an Alzheimer’s trial drug study, and it was an incredible experience for our whole family. The trial drug was hoping to target amyloid plaque buildup in the brains of Alzheimer’s patients. Not only did we see a positive effect in our Mom’s symptoms, but overall it was a very insightful and pleasant experience.

Along with clinical trials for those with mild Alzheimer’s disease, Brigid also highlighted various studies that people who are at higher risk of developing Alzheimer’s can get involved in now, before they see any signs of the disease.

One in particular that Poli, Boni and Trissi already participate in is the APT webstudy. This study uses online testing to monitor participants’ brain health over time and detect any signs of developing Alzheimer’s symptoms.

Brigid also mentions exciting new research developments, like the proximity to a blood test that can detect Alzheimer’s disease in patients. Read more about that here: https://www.nytimes.com/2020/07/28/health/alzheimers-blood-test.html

Other studies or research databases that Brigid recommends anyone and everyone get involved in are the AHEAD Study and the Brain Health Registry. Both are aimed at detecting Alzheimer’s in the brain before symptoms arise.

We also want to emphasize how important it is for this research to include a diverse range of participants. The studies mentioned above are easily accessible online, so please help us widen the participant pool by joining yourself and sharing with others.

Thank you again to Brigid Reynolds for joining us on two great episodes. Check out Brigid Reynold’s bio here: https://memory.georgetown.edu/about_us/team/

Check out Georgetown University’s Memory Disorders Program here: https://memory.georgetown.edu/

If you enjoy the podcast, would you please consider leaving a short review on Apple Podcast/iTunes?

Episode 9 of Alz In The Fam features Brigid Reynolds – our Mom’s neurology provider at Georgetown University’s Memory Disorders Program. All four Fair siblings sit down with Brigid, our first ever guest, to discuss Mom’s journey with Alzheimer’s!

Brigid is a research investigator conducting different clinical trials to develop new treatments for Alzheimer’s disease. She specializes in evaluating and treating patients with memory problems, like our Mom.

In this episode, Brigid gives us insight into how she evaluates and treats her patients, and the types of tests she administers to diagnose and create a treatment plan. She explains the different types of memory disorders, including various types of dementia.

Brigid emphasizes the importance of family members’ involvement in the process of diagnosing and treating loved ones with Alzheimer’s. She tells us why it is important that family members encourage their loved ones to seek treatment early.

She discusses some current research opportunities and studies being done in the Alzheimer’s and dementia field. Check out this information on an Alzheimer’s Blood Test, as mentioned by Brigid in the episode: https://www.nytimes.com/2020/07/28/health/alzheimers-blood-test.html

We are so grateful to Brigid for sitting down to speak with us. Brigid has been a blessing in our Mom’s journey with Alzheimer’s. Stay tuned next week, too, to hear more from her.

Check out Brigid Reynold’s bio here: https://memory.georgetown.edu/about_us/team/

Check out Georgetown University’s Memory Disorders Program here: https://memory.georgetown.edu/

If you enjoy the podcast, would you please consider leaving a short review on Apple Podcast/iTunes?

In Episode 8 of Alz In The Fam, listen as we decide that it’s time to intervene in Mom’s living situation. In this episode, the four Fair siblings discuss the next step in Mom’s journey with Alzheimer’s – moving out of her own home and in with one of her kids.

This step in Mom’s Alzheimer’s journey was a difficult one to take. Mom was extremely stubborn, and it was difficult to figure out a living situation that worked for both her and us siblings. While the first option included sharing her time between Poli’s house and Trissi’s house, this set up quickly became too difficult and confusing for the whole family.

The decision to move Mom out of her own house was difficult to make. We realized this step was necessary once we felt that our Mom’s safety was at risk living alone. Not only was she becoming less able to take care of herself, but there were outside factors and weird events that made us increasingly alarmed.

Ultimately, moving Mom out of her house and into one of our homes was a decision we made to keep her safe. While it was hard logistically and emotionally, it was the best decision for us all. Listen to hear more about this transitional period for our family and why we made this change.

If you enjoy the podcast, would you please consider leaving a short review on Apple Podcast/iTunes?

Episode 7 of Alz In The Fam features all four siblings as they discuss another step in their Mom’s journey: hiring her a caregiver. Hiring a caregiver was a tedious process, as it took several tries to find one who met the sibling’s needs and their Mom’s needs.

At this time, their Mom was still stubbornly set on living alone. However, Allan, Poli, Trissi, and Boni realized that the level of care and attention she needed was increasing. The sisters’ constant visits were not enough anymore, so the family decided it was time for some outside help.

Finding the right caregiver was a trial and error process. The siblings were looking for someone to keep their Mom company for a few hours each day that would help her with some basic tasks like driving and cooking.

The family went through the process of finding a caregiver a few times before finding one who fit their needs and wants well. Importantly, the siblings were looking for someone who their mom would enjoy spending time with.

Hiring outside caregiving help was a big step in their Mom’s Alzheimer’s journey. While it was nerve-wracking to embark on, it was an important step that helped keep their mom safe and healthy.

If you or a loved one are at this point in your own journey, don’t hesitate to look for outside help! The process can be daunting, but the support they provide is necessary.

If you enjoy the podcast, would you please consider leaving a short review on Apple Podcast/iTunes?

In Episode 6 of Alz In the Fam, ‘Alzheimer’s: Troubling Signs and Behaviors’, all four AITF siblings discuss troubling early signs of Alzheimer’s in their mom.

Each of the four siblings – Allan, Poli, Trissi, and Boni, share some increasingly strange behaviors they noticed in their mom during the early stages of her Alzeimer’s. Each sibling has different memories, but their stories all intertwine.

As the disease progressed in their mom, the AITF siblings began to notice troubling behaviors that made their mom’s situation harder. Whether it be the moment they knew she could no longer drive or her new relationship to alcohol, these behavioral signs developed in the early years of her Alzheimer’s.

Join Allan, Trissi, Poli, and Boni as they delve deeper into some of their early caretaking years and experiences. If you are observing any of these signs in yourself or a loved one, don’t hesitate to seek professional help. The sooner you do, the better.

 If you enjoy the podcast, would you please consider leaving a short review on Apple Podcast/iTunes?

Episode 5 of Alz In The Fam, hosts Allan and Poli introduce two more of their mom’s caregivers – their sisters Boni Fair Vinter and Trissi Fair Bennett! In this episode, all four siblings come together to discuss shared experiences and their family’s journey. 

Boni and Trissi share with Allan and Poli the first signs of Alzheimer’s that they noticed in their mom. Many of these moments are interconnected with those that Allan and Poli have previously shared, and they discuss their feelings throughout the discovery and diagnosis process.

The four siblings also touch on their roles as caregivers for their mom and how that has impacted each of their lives. They share stories, reminisce, and commiserate about their shared experiences and feelings as they continue to care for their mom with Alzheimer’s.

This special episode featuring Alz In The Fam’s first guests delves deeper into the Fair family’s journey with their mom. Listen as Allan, Poli, Trissi, and Boni share more of their story.

 If you enjoy the podcast, would you please consider leaving a short review on Apple Podcast/iTunes?

Assisted living facilities are being hit hard by COVID-19. In Episode 4 of Alz in the Fam, hosts Allan and Poli discuss the shocking news and aftermath of their mom testing positive for COVID-19. 

In Maryland, where Allan and Poli’s mom lives in a senior living community, a large percentage of coronavirus deaths have been in these senior care facilities and nursing homes. Cases began to appear at their mom’s facility about two weeks ago, so last week every resident and staff was tested for the virus. Turns out, their mom tested positive for the virus too.

For the most part, Allan and Poli’s mom is doing well, aside from lack of appetite and no ability to taste food. But this diagnosis led the siblings to having a larger conversation about their mom and her end of life care preferences.

The siblings have already taken steps to prepare for their mom’s end of life treatment - they have Advance Care Directive and Orders for Life Sustaining Treatment on file. The Alz In The Fam family urges all caregivers and children to have these conversations with your parents, no matter how difficult they may be. Being prepared is crucial.

Currently, some of your parents’ preferences or treatment options may have changed during the COVID-19 pandemic. It is important to have these difficult conversations and be able to understand how different scenarios may unfold for you and your family.

Here are the resources that Allan and Poli mentioned during the episode that can help every family navigate difficult end of life care decisions:

Maryland Orders for Life Sustaining Treatment: https://marylandmolst.org/pages/molst_form.htm

 Being Mortal by Atul Gawande: https://www.amazon.com/Being-Mortal-Medicine-What-Matters-ebook/dp/B00JCW0BCY/ref=sr_1_1?dchild=1&keywords=being+mortal&qid=1589922153&sr=8-1

 NYTimes OpEd article: https://www.nytimes.com/2020/04/04/opinion/coronavirus-ventilators.html

If you enjoy the podcast, would you please consider leaving a short review on Apple/Podcast/iTunes?