Alz In The Fam

11. Alzheimer's - Mom's Official Diagnosis

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.

 

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10. Alzheimer's - Chat w/Brigid Reynolds, Neurology Provider, Georgetown University Pt 2

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/

 

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9. Alzheimer's - Chat w/ Brigid Reynolds, Neurology Provider, Georgetown University Pt 1

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/

 

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8. Alzheimer's - Moving Mom Out of Her House

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.

 

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7. Alzheimer's - Hiring A Caregiver for Mom

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.

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6. Alzheimer's - Troubling Signs and Behaviors

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.

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5. Alzheimers - 4 Sibling Caregivers, 1 Mom

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.

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4. Our Mom Has Alzheimer's and COVID-19

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

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3. Alzheimer's - The Sundowning Syndrome

The Mayo Clinic article: “Sundowning: Late-day Confusion”, will be the focus of Episode 3 of Alz In The Fam. Sundowning, or twilighting, is a common problem in people with Alzheimer’s and dementia, and one that hosts Allan and Poli experienced in their mom.

Sundowning is a problem where impending darkness at twilight each day causes anxiety and confusion in people who have Alzheimer’s or dementia. In this episode, Allan and Poli will discuss in depth how they experienced this symptom in their mom and how they helped her through it.

This was a very troubling early symptom of Alzheimer’s in their mom, as she lived alone when this began, and each night brought on increased anxiety and fear. Every night, one of mom’s four children would do their part to qualm her fears and comfort her.

Sundowning is a symptom of Alzheimer’s and dementia that persists through early to moderate stages of the diseases. The Mayo Clinic article on the topic, found here: https://mayocl.in/3f7ETrq is a great resource for those experiencing this in themselves or their loved ones.

If you are noticing this symptom in a loved one or yourself, do not hesitate to get help.

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2. Alzheimer's - Early Warning Signs

“10 Early Signs and Symptoms of Alzheimer’s and Dementia”, from Alz.org is the subject of episode 2 of Alz In Fam.  Hosts Allan and Poli discuss the early warning signs of Alzheimer’s and dementia and how they first identified them in their mom. Following this article: https://bit.ly/2RL9p0b, Allan and Poli recount stories of the instances that they can now identify as many of these early warning signs.

Allan and Poli tell stories about their mom’s slow decline in memory as she began getting lost, forgetting how to perform basic tasks, having, and getting confused by time and place – all of which, and more, led them to realizing that their mom had begun her battle with Alzheimer’s.

Allan and Poli also discuss how difficult it was to take the leap of acknowledging the disease in their mom and helping her take the necessary steps to get the help she needed, ultimately becoming her caregivers.

If anyone is noticing early signs and symptoms of Alzheimer’s and dementia in themselves or a loved one, Allan and Poli encourage them to start the process of getting help as soon as possible. As challenging as it is to accept and admit that help is needed, don’t wait.

Allan and Poli are active members of the Alzheimer’s Association community. They encourage anyone and everyone who is affected by this disease to check it out.

The Alzheimer’s Association (alz.org) is a great resource that provides crucial information on the disease and support for both the caregivers and those suffering from Alzheimer’s.

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