Tag Archives: Alzheimer’s

Reviews ~ Losing a Mind

Still Alice by Lisa Genova available for $7-18

Still AliceI was introduced to this title through a Facebook support group of folks dealing primarily with the various forms of dementia and primarily as caregivers. There are a few professionals in the group, as well as a few who have been recently diagnosed with one of the many forms of the disease. If you are a caregiver reading this I highly recommend the group. There are now over 20,000 members from around the world. This means that among the many quick little supporting hugs and prayers, you rarely have to wait long for a practical idea (or several) if you post a specific issue. Many members have contributed to the files section with information, books and suppliers. It is a place to rant, to cry to share funny stories, to seek advice. The group is quite diverse and not all things are for all people but that is what scrolling, hiding and even blocking are for. I lived in that group for several months and still visit when I feel I can contribute something of value.

It took me awhile to get around to reading this book. I tend to be more centered on nonfiction and direct application. I was, in the end, surprised and feel that it is a work well worth the read. Still Alice is not based on real events, it is a work of fiction. It is, however, well researched and the events and reactions within the tale are portrayed in an accurate manner.

Alice is a brilliant and sought after psychologist and linguist that begins to notice issues with memory, her sense of direction and general mental function. After losing her way and her thoughts far too frequently, she seeks the advice of a neurologist and is diagnosed with early onset Alzheimer’s. The story is a beautifully depicted tale of her decent into the disease.

I appreciated this book because it brought out several issues directly related to Alzheimer’s, such as the chance of inheritance of the related genes and how to be tested. It also brought out the very real issues with dementia and the problems of caregivers. For instance, it is not an issue that you forget where your keys are, the issue arises when you can’t recall what a key is. Getting lost is one thing, but staring at the same street signs you have seen for years within a block or two of your own home and having no idea where you are – well that may be another matter.

Genova’s research is also evident within the plot line in other ways. We know that dementia can strike the brilliant as well as the average mind – simply “exercising” your brain is no guard against the disease. However, in the words of one of the doctors in the story, when someone spends their lives in active pursuit of knowledge, he or she develops multiple pathways to the same bit of information. When brain cells begin to die, there still remains pathways or pieces of pathways to the same conclusions; it just takes longer to get there.

This last is something that I and others noted in my husband. Until he became bedridden he pushed to learn. He was an active participant in the care that I and the hospice team provided. Perhaps he could no longer walk, but he would turn on the bathroom light when I would wheel him in. On more than one occasion his team would state, “He knows, you can see it in his eyes.”

We were not wishing it true. There was one instance when a volunteer was sitting with him and they were singing. I was in my office working. Suddenly I heard him say, “Oh, Shut up!” I flew out of my office to the dining room and leaned over to eye level. I told him I knew he felt like shit and I was sorry that was the case. However, he had never allowed that to make him rude in the past and now was no time to start. I left and returned to my office. Things seemed to calm down and later, when I went to the kitchen for something to drink, he motioned to me. Drawing me close he gave me a hug. No longer able to walk or take care of any of his needs and fast losing the ability to eat or drink – he still thought, he still reasoned, he still accepted responsibility.

The human mind is the most amazing thing. We know so very little of how it works, how it dies. It is way past time we learn how to care for and protect this most precious gift.

If you have any interest or connection with the world of dementia, give it a read. Through tears and chuckles I think you’ll find it worthwhile.

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Filed under Caregiving Backstage, My Bookshelf ~ Fiction

My visit to the Health eBrain Study

Well, this time my poking around really got me into things. I had written Meryl Comer, author of Slow Dancing with a Stranger, because I was so touched by her experience. She just happens to be a very reachable kind of lady and full of passion for her focus; mental health. During our chat she asked if I would share the press release for the Health eBrain Study around noon EDT, September 29, 2014. And I did. Everywhere I could think of. I also went one step further – I took the test.

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It’s a simple test that really doesn’t take all that long to do. You do provide some demographic information, mainly so that the researchers can compare apples with apples, sort of. It is NOT an IQ test. It tests your response time, the ability to remember a sequence (both forwards and backwards) and your ability to assess changing information based on some really simple parameters. Your score is provided at the end of each section and you are allowed to practice – how many times I’m don’t really know. If you do decide to take the test, I suggest you close everything else on your computer (yes, even Facebook) so that you can focus and do your best. It also helps the response time on some of your answers. My mouse got stuck in a couple of places and caused me to register a few errors. Which is okay; you aren’t competing for a scholarship or a vacation or anything, but it is a nice thing to provide the most accurate information you can.

So what is all the fuss about? Let me quote from the press release.

Changes in cognitive efficiency are closely linked and can occur with depression, fatigue, stress, and long-term chronic illness. This impact is particularly severe for caregivers of individuals with complex chronic conditions like Alzheimer’s and other dementias, two-thirds of whom are women. The physical, mental and emotional burden over time can take as much as ten years off a family caregiver’s life. It also can increase the caregiver’s own risk for dementia. [The numbers Meryl gave me are 6-1].

“Over fifteen million unpaid individuals provide care to the 5.4 million victims with Alzheimer’s or other dementias. [Just to point out the math, that is less than 3 individuals per patient which means that most of us are working far more than one 8-hour shift, seven days a week, 52 weeks a year.] We form the backbone of all unpaid long-term care in the U. S. What happens to our loved ones if something happens to us?” (Meryl Comer, a 17-year veteran of caregiving and President of the Geoffrey Beene Foundation Alzheimer’s Initiative.)

I really urge caregivers to take this opportunity to contribute to serious research about the impact of caregiving. It can give us much needed tools to mitigate or defer the impacts of a mind on holiday.

I have attached the press release for the study. The list of supporters for the program read like a who’s who in the world of caregiving and dementia. You will also find links to the video and to the survey itself. Again, no money is required – just a few minutes of your time to increase the pool of information that researchers need so desperately to find ways to help the caregiving community and those they care for.

Health-eBrain Study link: www.health-ebrainstudy.org

Geoffrey Beene Foundation Alzheimer’s Initiative: http://www.geoffreybeene.com/alzheimers.html

US Against Alzheimer’s: http://www.usagainstalzheimers.org/

Meryl Comer on Facebook (great news feed on things going on): https://www.facebook.com/meryl.comer.alz

What it is all about: https://www.youtube.com/watch?v=7dD3ROvJvbo&index=1&list=PLETJvf11XiB_EmzOS44Py8YCRC4VzHLOr

 

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Filed under Caregiving Backstage

Book Review ~ The Dance of the Absent Mind

Slow Dancing With a Stranger, Meryl Comer, Available on Amazon for $13-20

Slow Dancing CoverAs strange as it may seem, I don’t often read books about dementia. I do read a great deal about the brain, memory, and where we are in researching the functions of the mind. I am certainly not aware of my reason for following up on a generally posted suggestion to read this particular title. A brief post stating it was a “must read” (aren’t they all) in a Facebook support group for caregivers of those with dementia caught my attention. Well, why not?

Meryl both stunned and encouraged me with her account of two decades of care for her husband who suffered from early-onset Alzheimer’s. She has faced many things I have not had to deal with, including anger, violence and very public battles as her husband slipped into the disease at a high point in his illustrious career. Dr. Harvey Gralnick was a brilliant NIH scientist working on the leading edge of Leukemia research. Suddenly, he was showing changes in his behavior. Anger and confusion, and fixations on things no longer relevant. In search of an answer Meryl spent hours in doctors’ offices with few if any answers. When care became necessary, she burned through hospitals and facilities until the only choice was home with herself as lead to a caregiving team. In later years she added her mother to the already monumental financial and emotional burden.

In her own words, when given the opportunity to return to work as an advocate for the disease and direct a foundation fund, she saw it as a lifeline. Not only would she have income again if she could manage to take the challenge on; she had a place for “the sound of (her) pain (to) go.” US Against Alzheimer’s is an organization that strives to establish awareness in two ways; early detection and research on prevention.

There is no cure. Dementia, and there are several types, destroys various parts of the brain. Different dementia affect the brain in different ways. But once those cells or neuro-connections are destroyed, we know of no way to restore them or their functions. We barely understand functions of only parts of the brain and some of the interactions between the various areas of the brain. We are only beginning to understand the function of memory, how it relates to who we are, how it is built and maintained and what sorts of things impact how it operates. Reconstructing this vital piece of who we are is simply beyond us at this point.

This means that we have to get better at knowing risks, understanding early signs, and finding ways of mitigating or forestalling the onset. As an example we have been able to beat back the effects of many types of cancer through one crucial factor: early detection. We know that it is no longer an automatic death sentence to hear the words: “You have cancer.” We can treat it, at least some forms of it. But nobody wants to hear that they are predisposed to dementia. That who and what they are can be stolen away from them in slow motion or overnight. With the misunderstanding and discomfort our society has for any mental disability or challenge; the last thing we want to admit is that we might be “losing it.” It is long past time we stopped playing games.

Meryl points out in her book that France, Britain, the EU, Japan, Canada, China and India have all announced national plans to fight Alzheimer’s. Where are we in this battle with all of our vaunted medical expertise? Somehow we have to bring our country back to open debate on real issues affecting ourselves and our future. It is not just the cost of the various forms of dementia; the financial and medical cost doubles or more with the impact on caregivers. Lost employment, lost coverage, and asset depletion all create a burden on families and the country as a whole. Care in a facility can range from $50,000 to over $100,000 a year. In the state of Washington Medicaid will not kick in for the first two years in a facility. In home costs include medical supplies and durable medical equipment. Then there is in-home nursing or caregiving support and, if the caregiver cannot find a way to earn money from home, loss of income from outside employment.

Can we really afford not to be aware? Not to know ourselves enough that our family and friends know our preferences for care before we can no longer decide? Not to take responsibility for the road that may be ahead? I love my husband dearly and I will care for him as long as I am physically able. I would not, however, wish this on anyone else. I know that I may one day be in need of some kind of care and that drives me to work ever harder to build a safety net. There really is no one left for me to fall back on and those that I know of should not be burdened. Let’s find a way to learn when and how to prepare until we know when and how to cure.

Meryl’s organization can be found on the web at: http://www.usagainstalzheimers.org/splash-caregivers

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Filed under Caregiving Backstage