Tag Archives: marriage and caregiving

Alzheimer’s Benefit–Exposing A Goodness Quotient

Alzheimer's Caregiving Issues, Alzheimer's Spouse Issue, , , , , , , , ,

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I am prone to cynicism in general. And like a lot of people, I have been more demoralized by the state of the world than usual lately. So I am a bit surprised to find myself celebrating what, for lack of better phrase, I’ll call the goodness quotient in human beings.

Martin Luther King Jr., Gandhi, Anne Frank, Nelson Mandela, Saint Francis—their lives are awe-inspiring and intimidating in equal measure. They have had their human imperfections here and there, but few of us aspire to their level of goodness. At least I never have. (In fact, I admit to spending MLK Day sitting around the house when I should have been out volunteering.)

But after reading the recent spate of articles surrounding Reverend King and John Lewis as well as a post entitled Gratitude in the Land of Dementia on the blog One of Life’s Little Surprises, I am struck by a reality that I seldom consider, the capacity of so many “normal” people to help others.

In particular, how do so many people find themselves able to accept challenges and responsibilities they never imagined they would face when their loved ones became increasing cognitively impaired. Why don’t they walk away (as I am often tempted to do from a so far less difficult situation)?

Individuals may answer, “I love my husband/ wife/ mother/ father/ sibling/ friend/ partner;” but that’s not it, not in any conventional sense. Of course I can’t speak for anyone else when I acknowledge that whatever emotional chemistry existed between Ralph and me before his diagnosis—whether the early passion or deep marital affinity—has definitely altered since his mind and identity have altered along the Alzheimer’s spectrum. I suspect the same kind of alteration has occurred between other caregivers and caregivees.

So, what specifically is the mix of loyalty, generosity, duty and sympathy/empathy that makes so many of the caregivers I’ve run across (who know who you are, Mary, Nancy, and all you others) tick?

I certainly don’t have an answer, but it is heartening to realize that when faced with the challenge, a large number of flawed, normal people are capable of being kinder and more caring than we expected of ourselves

P.S. From Ralph: What Study?

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So just yesterday I wrote about the study Ralph has agreed to participate in to study the effects of a new drug that might inhibit the plaque build up that leads to Alzheimer’s.

This morning over coffee we were having a perfectly normal discussion of the news, what to have for breakfast, etc., when I mentioned to Ralph that maybe I should cancel the check up appointment with his internist coming up this week since he would be getting checked so thoroughly through the study.

He looked at me and said, “What study?”

I have probably mentioned that Ralph’s memory issues have a silver lining, that he particularly forgets any moment that has produced anxiety or unpleasantness in his past—in other words any argument he has had with anyone, any disappointment he suffered in the past, any moments of tension or distress. Evidently, he has forgotten our trek last week because it was anxiety producing–which is fine because if he ultimately gets rejected he won’t care, and if he is accepted and has to go through more tests and appointments, each will fade as soon as it’s over.

Another win-win.

P.P.S.

For Ralph and me at this point in our journey, participating in trials and studies concerning Alzheimer’s is always win-win, but it is important to recognize that participation in experimental studies is a very personal decision and not the right decision for everyone or every situation. When Ralph was first diagnosed, we signed up for a trial that involved one and one exercises; it didn’t go well. Rick hated the questions and resented the process. Later, when he attempted an MRI for another possible study, we encountered the bb pellet problem. [For those who were curious, Ralph’s parents were very lax about firearms and allowed Ralph to have a BB rifle when he was around six. I picture him as a tow-headed little “woods booger,” as he called himself, in his favorite cowboy shirt–which he still has–chasing after birds and squirrels until he promptly shot himself in the tongue (luckily not the eye). His parents may or may not have taken him to a doctor, but nothing was done. Ralph forgot he had  the BB  until a dentist noticed it on an x-ray thirty years later. Rick said his mouth got quite hot during the MRI, and the pellet distorted how the MRI works, making it unreadable.] At some point I talked to a social worker who pointed out that no one should ever feel pressured to participate in studies and that health and emotional well-being come first.

 

“Florence Foster Jenkins”–An Example of The Elasticity of Marriage and the Caregiving Spouse

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I have learned most of what I know about history and society and morality from reading good novels and watching good movies (I admit I go to TV more for the escape). But fictional portrayals of family care giving in books and movies usually leave me cold. There’s too much sentimentality and nobility, or conversely cold conniving and self-interest.

When I saw Away from Her several years ago, I loved it for Julie Christie’s performance and because it moved me emotionally, but I wasn’t dealing with an impaired spouse myself at the time and accepted the soft focus presentation of  memory loss without question. I suspect that if I were to re-watch that movie  or Iris, based on the loving memoir by philosopher-novelist Iris Murdoch’s never-complaining husband, I might react with a little defensive impatience since everyone in both films  exhibits a niceness I obviously can’t always muster.

I certainly didn’t go see the new Meryl Streep/Hugh Grant movie Florence Foster Jenkins expecting to feel my soul exposed. But, I was shaken by how honestly it captures the complexity of a lopsided marriage in which one of the spouses has become the caregiver for the other.

The movie is about an actual Manhattan socialite known  both for her great philanthropy and for giving hilariously bad public concerts, including one at Carnegie Hall, despite having absolutely no singing ability, let alone talent.

I appreciated that there were none of the dreamy flashbacks or usual movie platitudes about cognitive loss that drive me crazy, maybe because Mrs. Jenkins does not have  Alzheimer’s. However  her ailment, with its own traumatic results, could be seen as an equivalent for the early twentieth century and required her husband to play a role many of us dealing with dementia issues will recognize.

And as good as Streep’s performance is in the title roll—and she is wonderful at making Mrs. Jenkins a real woman rather than an over-the-top caricature—even non-caregiver viewers will probably agree that Grant carries the movie.

Struggling to find my own balance as wife and caregiver, I found myself mesmerized by Grant’s performance as a husband forced to go beyond and at the same time fall short of normal spousehood. Others in the film might approve or condemn the decisions he makes concerning both his wife’s happiness and his own, but as Grant portrays him, the complex layering of his feelings for his wife at any given moment defies simple labeling like selfish or supportive.

And watching this husband try to keep his wife’s world intact as long as possible was painful and true—historically accurate evidently but also  emotionally real and close to home at least to me.

In other words, if you have a chance, go see it. And let me know what you think.