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When is Enough Enough?

Many of my readers have probably faced this dilemma with your loved ones — doing all you can to promote healing and as good a quality of life as possible and reaching a point where you are not sure whether what you are doing is in your loved one’s best interest.

As you may know, I have been guardian and power of attorney for my dad’s sister, Aunt Eunice, for over ten years.  (My mom took care of her needs as long as she was able.)

Aunt Eunice has been a resident in skilled nursing care for the past 27 years.  Exactly a year ago in October the facility where she had lived for 26 years closed down and she then was moved to the town near where she grew up near Falls Mills, Virginia.  The move severed the good friendship with her roommate of many years, Juanita.

Now, looking back over this troubled year, I realize that Juanita not only kept my aunt as good company but put the spark in her life to keep on living.  Juanita, 30 years my aunt’s junior, now is happily adjusted to assisted living in a new facility.

My aunt, on the other hand, never adjusted, and at age 91 has been dealing with complications from bed sores for over three months.   She remains in the hospital after a second debridement procedure.

Her diet has been next to nonexistent for a couple of months.  She was subsisting on orange sherbet when I agreed during the first debridement procedure for her to receive tube feedings, hoping the nourishment would promote healing.

She continues to refuse food.  I ask myself am I really doing her any favors.  She is legally blind and bedridden.

 

InvestAcure Headliners

MaxTokarskyimageInvestAcure Founder and CEO Max Tokarsky will make a keynote presentation at the 14th World Summit on Alzheimer’s Disease in Boston on August 31st.  InvestAcure is building a spare change investment platform to help millions of people impacted by Alzheimer’s invest in companies working on a cure.

Dr. Pierre N. Tariot, MD, Director of the Banner Alzheimer’s Institute, has joined the scientific advisory board of InvestAcure to provide guidance in both educational programming and in developing a strategic vision for advancing the development of treatment and cure for Alzheimer’s disease.

“Dr. Tariot is one of the world’s leading experts in translating cutting-edge science into treatment and cure.  Having him join our scientific team helps build a solid foundation for realizing the InvestAcure vision in the fight against this horrible disease,” said Max Tokarsky, the CEO and Founder of InvestAcure.

Dr. Tariot decided to join the InvestAcure effort because, “I have devoted my career to the care and study of people with or at risk for Alzheimer’s disease, and their families.  I witness the devastating toll that this disease takes on my patients as each one gradually loses his or her very identity and ability to function.  All the while, progress in developing promising treatments is slowed by difficulties in securing industry investment. ”

You will remember a previous article on this site introducing InvestAcure.  InvestAcure has developed an innovative plan that promises to fundamentally change that previous dynamic and help accelerate efforts to find new treatments so that yet another generation is not lost to this terrible disease.

 

About Pierre Tariot, MD

Dr. Tariot is the director of the Banner Alzheimer’s Institute in Phoenix, one of the leading Alzheimer’s research centers in the world.  Over his long career he has led efforts in investigating the diagnosis, therapy, and prevention of Alzheimer’s disease, publishing over 350 papers on these topics.  Several of these studies have led to Food & Drug Administration (FDA) approved treatments.

Together with his colleague Eric Reiman, he serves as co-director of the Alzheimer’s Prevention Initiative, an NIH-funded international program to study experimental therapies that may delay or even prevent the symptoms of Alzheimer’s in people at high imminent risk.  He is a Research Professor of Psychiatry at the University of Arizona and a Fellow of the American College of Neuropsychopharmacology.  His research affiliations include the NIA, the NIMH, and the Alzheimer’s Association.

 

About InvestAcure, PBC

InvestAcure is a Public Benefit Corporation with a vision to see a world where drug companies are owned by millions of spare change investors committed to curing Alzheimer’s.  To realize this goal, the company is building a spare change investment platform to enable those impacted by Alzheimer’s to partner in the search for a cure by rounding up day-to-day transactions and investing the spare change in clinical stage pharmaceuticals, working on promising drugs.  this would help transition investment leadership from a narrow group of profit-driven investors to a much larger and stable investor base motivated primarily by the search for a cure, leading to more clinical trials, more drugs and drug combinations tested and progress to a cure.

 

 

One of the cruelest aspects of Alzheimer’s disease is the threat of losing personal dignity, pride, and place of being.  Many of us have had to witness a parent or mate experiencing this painful loss.

Kate Prior, writer/producer, and film director Abigail Greenwood are dedicated to telling women’s stories.  In “Theodora” the film writer is exploring a day in the life of Meredith, a 70-year-old woman with Alzheimer’s dementia.  Not just any day, but the day her family have come to take her to assisted care.

Film writer Kate Prior chooses to draw an analogy from an historical novel, Theodora:  Actress, Empress, Where  (the story taken from an empress of the Roman Empire around 500-548 A.D.) with 70-year-old present day Meredith.  Both women are struggling against their loss of independence.

Through this analogy we gain a more intimate view into what Meredith was going through emotionally as she was having to leave her home of 30-plus years.  And perhaps we will be able to understand a bit more deeply the impact of loss our loved ones experience.

To view the film, click here.

 

To access a recording of the August 8th, 2018 webinar, go to https://CureTalks.com. Scroll down to activate this recorded program.

Dear Readers,

You may have noticed I have spoken very infrequently about my father, who suffered from the age of 46 with frontotemperal dementia. I have deliberately refrained from talking about his extended illness because the memory of what he endured and its impact upon my family as we tried to be there for him still dredges up emotional pain.

Finally, 21 years following his death, I am ready to look a bit more objectively at frontotemperal dementia, seeking to better understand the differences between what my dad suffered from as opposed to the Alzheimer’s disease that my mother battled.

You are invited to join me on Wednesday, August 8th, at 3:00 Eastern Time, for a live, online discussion of FTD (frontotemperal dementia) and Alzheimer’s Disease, their similarities, differences, risk, diagnostic tests, progression stages, treatments, and clinical trials led by Dr. Murray Grossman and Dr. David Wolk, researchers at the University of Pennsylvania.

I have been requested to served as a panelist for this program.

This online talk show is sponsored by CureTalks.com. CureTalks features live talks on various health subjects relevant to a wide segment of our population. These talks feature a leading expert or experts in conversation with a panel and the audience.

You will be able to ask questions of the panelists LIVE on the talk by dialing in. To participate, go to CureTalks.com and click on View Details.

To hear the talk via phone or online, add your email when directed; and you will be sent Live Talk access details. You can also write your questions in the Comments/Questions section. Your question may then be selected to be featured on the talk. This program will last one hour.

Hoping my East Tennessee drawl does not put you off! Guess this will be our time to find out, won’t it!

A Bond We Share

If there is one thing I have learned over the past almost ten years of publishing Memories from My Life, it is that we caregivers throughout the world share a bond; we do all we possibly can for our loved ones. Oftentimes that care comes at great peril to our own health and well being.

Several weeks ago I received a letter from a young man from Ciudad Ojeda, Venezuela whose 63-year-old mother has been dealing with Alzheimer’s since 2010. He wrote that her condition has deteriorated over past months due to an inability to afford and obtain needed medication for her care. As you may be aware, the political and economic situation in Venezuela at this time is critical.

This young man, Adrian Pina, has established a fundraiser in honor of his mother. After weeks of deliberation over his situation, I am inviting you my readers to consider coming to his aid.

I was told that funds raised will be distributed as follows: 70 percent to the Alzheimer’s Association of Venezuela and 30 percent for his mother’s medications and treatment. Click here to contribute.

I want you to know about a courageous woman from Great Britain, Wendy Mitchell, who has written a book about her experiences living with early onset dementia.

Wendy Mitchell had a busy job with the British National Health Service, raised two daughters alone, and spent her weekends running and climbing mountains. Then, slowly, a mist settled deep inside the mind she once knew so well, blurring the world around her.

She didn’t know it then, but dementia was starting to take hold. In 2014 at age 58 she was diagnosed with early onset dementia. What lay ahead of her after the diagnosis was scary and unknowable, but Wendy was determined and resourceful, and she vowed to outwit the disease for as long as possible.

As she learned to embrace her new life, Wendy began to see her condition as a gift, a chance to experience the world with fresh eyes and to find her own way to make a difference. Even now, her sunny outlook persists: She devotes her time to educating doctors, caregivers, and other people living with dementia, helping to reduce the stigma surrounding this insidious disease.

Still living independently, Mitchell now uses Post-it notes and technology to remind her of her routines, and has created a ‘memory room’ where she displays photos – with labels – of her daughters, friends, and special places. It is a room where she feels calm and happy, especially on days when the mist descends.

This is what Wendy says about her writing:

“That it will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure — the end is inevitable. However, I’m also hoping I can convey that, although we’ve been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humor; we still have feelings. I’m hoping to show the reality of trying to cope on a day-to-day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. Living as well as you can with dementia is all about adapting. Adapting to new ways to enable us to live better for longer with dementia.

What I want is not sympathy; what I want is simply to raise awareness.

I’m the proud author of the Sunday Times Best Seller, “Somebody I Used to Know”, which just goes to show, you should never give up on yourself.

Wendy Mitchell’s book is a chronicle of one woman’s struggle to make sense of her shifting world and her mortality. “Somebody I Used to Know” is philosophical, poetic, intensely personal, and ultimately hopeful. It is both a tribute to the woman Wendy Mitchell used to be and a brave affirmation of the woman she has become.

Ballentine will publish this memoir in June to tie in with Alzheimer’s and Brain Awareness month. “Somebody I Used to Know” was chosen as Amazon’s Pick Of The Month.