Monthly Archives: September 2014

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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Reflections ~ When Letting Go Gives a Firmer Grip

Epiphany. A word misspelled, misused and, sometimes, misunderstood. Its roots lie deep in Latin and relate to a moment of divine manifestation. There is even a feast named Epiphany on January 6. It also means (according to the Oxford Dictionary) a moment of sudden revelation or insight. In my opinion such moments are often life changing. I have experienced both joy and suffering at such times – today it was joy. Today I had an epiphany.

The last few weeks have been rather difficult in our household. My husband has been experiencing a number of deteriorating symptoms as he and I travel in this alternate universe called dementia. It became necessary to put him on a prescription that is meant to calm him. A move I was reluctant to make. But it did become a matter of necessity. Happily it appears to be helping.

He is slower. His communication skills have dropped precipitously. He is quickly losing control over his bodily functions. We have had much learning and adjusting to accomplish. Today he was becoming quite (actually royally) peeved with me because I would not take him to some imagined meeting he could not miss. This went on for a couple of hours and I suddenly realized that I was not upset. I was not tearing my hair out wondering what I was doing wrong. I was not yelling at the top of my lungs that I was doing the best I could. In fact, I started to giggle.

Standing in our kitchen looking at my beloved spouse, now so far from me, I realized that I was doing the best I could. Simple, right? Not really. Any caregiver can tell you that no matter how hard we try, somewhere deep inside we feel inadequate. We are not creating a perfect world for that one person we care so much about. We are not fixing it. And, sadly, we won’t. You know what else? It’s not our fault.

I could not do what he wanted and needed so badly for me to do right that very minute; and I did not feel a single ounce of guilt. Not one drop. At one point I was able to let him talk on the phone with our caregiver (we were setting up times for tomorrow) and he was promised she would be here and they would talk – and it worked. It wasn’t a desperate cry for help, it was a practical solution.

Can I keep this feeling? Cling to it for the release and freedom it gives me? Probably no more so than anyone leaving the Sunday-night revival and heading to work on Monday morning. But now I have a secret. I know what it feels like. And I can get back there. And from that place I will gain strength and I will do the best I can. I did not do this to him. It is not my fault.

Warning: The following clip does contain “South-Boston” language.  It is a scene from Good Will Hunting when Matt Damon and Robin Williams are discussing – it’s not your fault.

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