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Caregiver Network News welcomes comments from our readers.
This was submitted by Jerry E. Hess of Asheville:
The [following] article Whooping Cough, Alzheimer's and the Fickle Finger of Fate needs to be considered as a response to an article in the February issue of MemoryCare's Caregiver Network News newsletter. The first part of said article makes reference to a sense of loss regarding a spouse's dementia. I consider this to be the negative half of the article. It talks about a Carespouse being robbed of sharing daily experiences, of losing one's best friend, life companion and confidante, and of being married but no longer having a marriage. These are the excerpts to which I take specific exception in my article.
However, I would like to point out several phrases contained in the second part of the MemoryCare article, which I consider the positive half of the article, that also widen the gap between the person with the disease and the share partner. Terms such as "....in there somewhere," "....for a while longer" and "....if only for a short time" all portray a sense of pending doom. Such terms may or may not be understood by the person with Alzheimer's (hopefully not), but they are clearly intended to be understood by, and to stroke the share partner. Such words can only underscore a share partner's sense of having a doleful and woebegone lot in life. To what purpose?
The concept of there being a class of people called "Care GIVERS" means, of necessity, that there is also a class of "Care GETTERS." How demeaning is that? Bad enough the individual with the disease has to recognize that she or he is losing their mind without adding the onus of becoming a burden. The "system" is calculated to make things worse for the person with the affliction, for the sake of stroking the other person in an effort to keep them on the job.
There is a song from my frivolous youth, or perhaps even before my own youth, which contains the line "....accentuate the positive." I find that it is far better for both my spouse and myself to be positive about what we do have, and not spend too much time worrying about what we do not.
Whooping Cough, Alzheimer's and the Fickle Finger of Fate
When I was a young boy I liked baseball players Duke Snider and Clint Hartung. Many people knew the "Duke." He played for the Brooklyn Dodgers and was one of the quintessential "Boys of Summer." Not so many folks ever heard of Clint, who played centerfield for the Minneapolis Millers, a minor league farm club of the New York Giants. I liked them both about the same. I also liked John Dennison, Mrs. Garritz and Flash Gordon, also about the same.
But I was content being who I was. I didn't want to actually be Duke or John, not even to be like Duke or John. I liked them, respected them, but was very happy playing with the cards I had been dealt.
As I have lived my life there have been many times when I saw someone or something I liked, and when it was some"thing," and I could reasonably attain or obtain that thing, I went after it. That included such "things" as an education, an airplane, sex, and a better backhand. It also included finding a good life's partner. With this latter effort I struggled a bit, but in due course found a wonderful mate.
Life's observations and experiences didn't change. Now there were two of us finding things and people we liked, things we wanted, people we admired. But I never once felt any desire to be anything or anybody other than myself. I was far from perfect and I recognized that fact. But I was content.
Then my partner and I got old. We didn't intend for it to happen so fast, but, alas, it did. However, as Douglas MacArthur once said, "Youth is a state of mind, not a time of life." So we got old, but thought young, or at least younger. We continued to be content with who we were. I have a sticker on my Harley helmet which reads, "I may be used, but I ain't used up."
Then one day my partner started noticing that she was becoming increasingly forgetful. We went to a neurologist who told us she had MCI, mild cognitive impairment. MCI became Alzheimer's disease. Was it "early onset" or not? Who cares? Do we wish we didn't have the damned disease? You can bet your hat on it cowboy. But we have it. We can't be the Duke, we can't be young and we can't wave a magic wand and get rid of the dementia.
A lot gets written and discussed about "caregivers" and "carespouses," and the tribulations these folks experience in juxtaposition to the individual with dementia. This focus is well intended, and there really isn't any "right" or "wrong" way to analyze a particular situation. I can't tell others to feel like me, or to look at their own lives through my eyes, anymore than I could or would consider doing the reverse. However, there is definitely another way to look at living life with Alzheimer's, other than the way most commonly considered, and other than lamenting the fickle finger of fate that has touched the lives of those involved.
People with whooping cough or cancer undoubtedly wish they didn't have the affliction. Their loved ones undoubtedly feel the same. Much better to have no afflictions, to be able to hit the ball like Clint Hartung or to grow old more slowly, and with a lot of assets. Unfortunately life doesn't work exactly like that. We prepare as best we can for the next at bat, for the big dance, for the upcoming interview, for the size 32 waist and for the low hard ball in the backhand corner, but "things" ain't always going to work out the way we planned or the way we wanted. So be content with the way they do work out. If you've filled each minute with sixty seconds worth of distance run (I think that may have been Kipling) there isn't much else you can do anyway.
Is there grief and loneliness in losing my life's companion? Hell no. I haven't lost my life's companion. She has changed, she's different, but she's still here and I'm damned happy and damned lucky that she is. Am I still married, but without a marriage? Absolutely not. I'm still married, period. My relationship with my partner has changed, and probably will continue to change, but I am still married, and I do still have both a relationship and a marriage that I very much enjoy. How many old folks have the same marriage they had when they were younger? Not many would be my guess. Life changes and relationships change, with or without Alzheimer's.
Does having Alzheimer's rob my partner and myself of sharing daily experiences, or rob her of savoring the good things about daily life that everyone else enjoys? Of course not! If anything my spouse and I now share more daily experiences, not fewer. While it may not be exactly romantic, there is something warm and comfortable about helping my lady dry off after her morning shower, something intimate about shaving her legs or helping her put on a brassiere or a sweater. We have a gajillion daily experiences. They are undoubtedly different than they would have been without Alzheimer's, but that doesn't make them bad, or even worse, just different. Besides which, they are what they are. I can't be Flash Gordon.
As far as robbing my spouse of experiences everyone else enjoys, I am reminded of a lesson I learned early in life. I have a brother who is blind and mentally retarded. He lives in a group home with 14 other similarly situated men and women. Jim has never had a romance or a sexual encounter, never had his own home, never drove a car, never had a "real" job and never did most of the things the rest of us do on a daily basis. However, when I go into Jim's group home I find a bunch of the happiest people you ever want to meet. To a person they are warm and friendly, they care for each other, for themselves, and for you. They don't know what they're "missing," or even that they're missing anything at all. They don't know that we feel bad for them because they can't do the things that we find "better." And don't tell Jim his job at the Opportunity Workshop wasn't "real."
Have I lost, or am I losing, my best friend and confidante? Not by a long shot. Friendships come in all sizes and flavors. Some of my closest friends I haven't seen for years, some I will never see again. But friends we are, and friends we will remain, whatever the morrow may bring. Marriage is the only friendship any of us have that is "required" to survive 24/7/365/ad infinitum. The only way that works is for that particular friendship to "evolve." Evolution means change. Our friendships with our spouses are going to change, with or without whooping cough or Alzheimer's disease. If the disease causes most of those changes to be unusual and different than we might have expected or might have preferred, get over it. Take the cards you've been dealt and play the hand. Enjoy the game, if not the result.
I really do like the term "New Normal." Living with Alzheimer's is definitely that. However, let's not equate "new" or "different" with "bad." My bride and I have been fighting this battle for almost seven years. We'll continue to fight it as long as we can. As she becomes less and less aware of the fact that she is actually in the fight, as she forgets more names, more words and more daily skills, the conditions of our love and our relationship will continue to evolve. But it's not the evolution that's important, it's the continuation. My wife will be my bride, my confidante, and my life's companion so long as there is a life to be companion to.
Your comments are welcome.
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