The Disease Process

Image courtesy of National Institute on Aging/National Institute of Health

Attached is a simple diagram that shows what is currently believed to be the causes of cell death in the brain of a person with AD. New research is constantly being done to dig deeper into this process most especially to find a cure or someway to slow down this damage. In this category from time to time I will post these science tidbits to keep people informed.

A Turn of Mind

Turn of Mind by Alice LaPlante is another first person fiction centering around a person with Dementia. This one has a twist. It is a murder mystery. Yes, the main character Dr. Jennifer White, a hand surgeon is suspected of murdering her best friend and cutting off some of her fingers (creepy), a great launching point in this purposely confusing romp through Jennifer’s mind. She of course has her moments of lucidity so well known in the disease to help move the plot along. It is however her melting reality that is so fascinating. There is even one point in the story where she is aware enough to wait for her reality to move on like the next scene in a movie where you have the best seat in the house. Outside views are run through a journal where family, caretakers and friends write their versions of happenings to help jog Jennifer’s failing memory. I also liked the part where Jennifer makes an escape and reestablishes her life for a short while. It is sad, dangerous and humorous all in one. I classify books like this as Dementia empathetic fiction. They give you a view into what it might be like to have Dementia and to try to sort out your reality. It will give you some thought provoking moments and send you off for some physical and mind exercise as well as nutritional supplements. No one wants a steady appetite of this empathy. This book is a wonderfully twisted demented mystery.
(Note: My book group really enjoyed it)

A Song for Martin: a demented Swedish cautionary tale

I have made it my recent goal to review various books and films that deal with the subject of Alzheimer’s disease and Dementia. It is a weird world out there and this will be an interesting journey. My first discovery was the book by Lisa Genova -Still Alice that I have already blogged about. It will remain one of my top favorites. My second discovery will also be a top favorite for an entirely opposite reason. A Song for Martin is a Swedish movie from the director Billie August (available on Netflix). The main actor and actress in the film both deservedly won Swedish Film Awards for their performances. It is always a challenge for an actor to effectively play a person with Dementia.
The plot grips you with some very quick irony. A Swedish symphony conductor and his first violinist discover that they are soul mates and leave their spouses to embark upon the peak love affair of their lives. In the romantic world, this mighty love connection and major family disruption naturally will pay off big in their lives- a happily ever after thing. Here enters the irony- he develops Dementia. This is not the romance of anyone’s dreams. After the diagnosis which occurs classically after his symptoms are dismissed as overwork, the couple’s life begins a long downward march. What impressed me the most about the film was that it contains so many crystal moments of what you should not do with a person who has Dementia. The wife most naturally shows the strain of a life she never wanted and treats her husband in some spectacularly negative and misguided ways. There is a scene at about an hour and 16 minutes in, that I consider a great example of a Dementia disaster. Without creating too much of a spoiler, the scene consists of the wife making a very short sighted mean remark that hurts her husband and he gets spectacular revenge ( an audience gasper- supportive note: no one is killed in this film). In response to this she makes another terrible remark and he majorly decompensates in a largely excremental way. I will say no more as you may enjoy the film for the giant cautionary Dementia tale that it is. I meanwhile, will continue to mine this brave foreign film for teachable moments.
(Coming Soon: Turn of Mind by Alice LaPlante)

Notes on Still Alice by Lisa Genova

Having lived through the long vast maze of Alzheimer’s disease as a caregiver, I have a special vantage point. I often likened my caregiving experiences to living with Alice in Wonderland. I have always tried to imagine what it must feel like to be looking out from a brain altered by the changes of Dementia. Lisa Genova has done just that in her book Still Alice and with much story telling craft. She does not pound us with the unrelenting nature of the slip into the disease, but skips more lightly through Alice’s life giving us just enough to be at times terrorized, to soul search and definitely to empathize with the plight of her prominent character Dr. Alice Howland tenured Harvard professor of Psychology with an ironic specialty in Linguistics. How could someone fall from such a sacred place? She does fall and we fall with her. We try hard not to see ourselves in the descriptions of loss but to simply be involved in Alice’s journey. After all it is just a fictional novel. That is not to be. Genova carefully sets a trap for us and the intimate first person portrait of Alice the ” unreliable source” compels us to be there – deeply there. It might be easier to say it was just a good read, if I didn’t happen to fall into the age group that is universally troubled by forgetting keys, glasses and occasionally people’s names. We are pulled in and can see in this portrait just how we might slip another few degrees and be with Alice in her not so wonderland. This book is a compelling read and a deeply provocative portrait of a capable person’s decent into Alzheimer’s disease. We all need an empathetic ride like this. It will with out a doubt improve our humanity.

The Whole Person Concept

Check out the new page I added on the Whole Person Concept and Living well with Chronic illness. It is one the keys of my philosophy on Alzheimer’s disease/dementia. It is an excerpt from my Alzheimer’s Workbook. So if you like it and want more, I encourage you to buy the book. I will be entering more posts in the future about problem solving and retrogenesis as they are also key factors in managing this group of diseases.

Blogosophy

1/1/2012 Welcome to the beginning of my blog. I have no idea who will eventually discover these writings, but as with all bloggers I hope to build readership. I personally hope in 2012 to add this blog to my expanding programs and projects as well as to continue to promote my book The Alzheimer’s Workbook: Holistic Health and Problem solving for Everyday Care (link available on this site). Alzheimer’s disease and dementia are popular subjects now that the boomer population is moving into later middle age and thus running greater risk of developing this disease. Losing our memories and possibly “ourselves” raises fears in all of us. While we increase our time doing brain puzzles and swallow more nutritionals to keep the wolf from our door; many people are silently suffering. Upwards of 70% of all persons with A&D (Alzheimer’s & dementia) are cared for in their homes by family and other caregivers. Once they get their initial information after diagnosis; they are often left to fend on their own. Caregivers can easily find a support group to attend, but often they don’t. Life becomes simply to full providing care. Thus they move forward seldom getting much new information to help improve their lives. I was there once myself as a caregiver for my Mother-in-Law and felt this constant need for new ideas to keep up with caregiving challenges. Then we only had books and this made it very difficult as reading time was scarce. The internet does provide a solution to this deficit. Ideas abound -some good some not so good, but often simple trial and error in combination with sensible judgment will weed out what doesn’t work. So what ideas are out there to explore?
My personal philosophy is that of holistic health including: mental, physical, emotional, social and spiritual elements. With this comes the realm of” living well with chronic illness” and habilitation verses rehabilitation. We cannot restore persons with A&D to their former states of function. There is no cure. The bigger question is how can we help them have the best life they can within the range of their skills and feelings in the moment? This requires looking at each person as a whole being with all their assets and deficits as well as the richness of their character. These all seem to wash out when you have a person with A&D standing in front of you raging over something real or imaginary. Still we have to look more deeply than their most immediately annoying symptoms to decrease these very actions that distress us. Yes, it takes work and there is no easy path; but a creative methodical approach can bring things into some harmony. I work with A&D to contribute my thinking to the pool of helpful ideas for caregivers and person’s with A&D hoping to decrease suffering and increase happiness. Can one live well with a chronic illness? The answer is a definitive yes, but it takes thought and awareness essentially-mindfulness to get there. This blog is here to explore these themes and contribute to the greater conversation going forward. Feel free to comment and e-mail questions for further discussion. I welcome the dialogue.

THANKS FOR COMING

The Alzheimer’s Workbook is an easy to use, well organized guide for family caregivers that provides instant help and problem solving strategies as well as long term tracking and measurement of the disease’s progress.