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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5 Comments

Filed under Caregiving Backstage

5 responses to “Book Review ~ The Dance of the Absent Mind

  1. This review is written straight from your heart, and the questions it poses about research need to be answered because one thing is clear. In an ageing population, more and more people will experience the anguish and struggle you have to deal with every day, almost on their own and that should not be tolerated for a second more than necessary. I cannot believe that with the right resources and will-power, hope could be given to millions of people whose lives are gradually cloaked in a peculiar form of horror

    • Thank you Peter. As it happens I am in a continuing conversation with the author and hope to help her get the word out about the organization and the work she is doing for caregivers. She’s an amazing woman, her courage is both scary and an inspiration.

  2. Oh wow *hugs* Your blog posts on this topic always leave me speechless- I hope I will be strong enough if I am ever placed in your shoes *hugs*

  3. Both assisted living and hired in-home caregivers can have their pitfalls. A quality care facility can cost $5000 a month or more, but a good facility is worth it. There are all too many bad facilities out there.
    Then the big problem with in-home caregivers is the potential for theft. The catch-22 for hiring a caregiver to free your time to work is that the person will be unsupervised while you’re working.
    Personally, a good solution is to hire a maid service or such to do periodic house cleanings, and they can be scheduled for times when you can be there to supervise them.

    • You still have to resolve the time when you can’t be there. I’m working on that part. The thing that shocked me about Meryl’s experience is that these facilities were supposed to be specifically structured for the memory impaired, and yet they were shocked at his behavior. I’m far more shocked at theirs.

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