I recently read an article in the April 28 New Yorker by Michael Kinsley who was diagnosed with Parkinson’s twenty years ago and is beginning to evidence some cognitive “deficits” as, he says, neurologists “put it tactfully.” The article treats a very unfunny subject – the onset of dementia in Parkinson’s patients – in a manner that ranges from witty to laugh-out-loud funny. My favorite example of the later is a discussion of famous people with Parkinson’s, including Hitler, Franco, Mao Zedong, Michael J. Fox and Thomas Hobbes (the author of Leviathan who said life is “poor, nasty, brutish and short.”) Kinsley writes: “Is it just a coincidence, I ask you, that both Hitler and Franco were nasty, brutish and short? Chairman Mao was five feet eleven. Michael J. Fox is neither nasty or brutish but he is undeniably short.”
Because dementia is associated with the later stages of Parkinson’s, Kinsley decided to take a cognitive assessment test that he had taken twice before, once right after his diagnosis and then again eight years ago. “My motive was part scientific inquiry, party hypochondria, and part the journalist’s reaction to any interesting development – this will make a great piece.” The test showed a decline in executive functioning. The doctor told him it is exactly the decline that would be expected in people in their sixties who received the diagnosis in their forties. Kinsley remarks, “Although doctors are devoting their lives to helping people get better, they seem to find a strange satisfaction in seeing a disease take its expected course.”
One of Kinsley’s most interesting observations comes right at the beginning of the article. “You are the person least qualified to be writing about changes in your own brain, since you need your brain to comprehend these changes. It’s like trying to fix a hammer by using the hammer you’re trying to fix.” A happy insight for me caring for a mother with Alzheimer’s. I think her disease is protecting her from realizing how much she has slipped mentally. Like Kinsley and Lori, her attitude is good.
I was driving to a friend’s to talk about Lori’s Lessons to my book club when my mother’s nurse Ashley contacted me. Mom is in the early stages of Alzheimer’s. Most of the time she is good except that she has no short-term memory, but last night she was terribly upset. Mom was frantic to get home, although she was in the condominium where she has lived for fifteen years. The nurse asked me to speak to her. It was so sad: My mother was desperate to get home to my father. I had to tell her he had died twelve years ago. Then she was upset that she couldn’t remember he had died.
I had to choose whether to turn around and go to my mother to comfort her or to continue to book club. After Ashley texted me that mother had calmed down, I knew she was safe with her nurse, so I decided to go to the meeting but to tell my friends I might have to leave before the discussion. At least I wouldn’t be letting my friends down altogether. Shortly before everyone sat down, I called to learn Mom was asleep. Fortunately, I had made the right decision.
I keep in mind Lori’s lesson number 19: Make sure your caregiver has something else in his or her life to give him or her fulfillment. A steady diet of you/you/you will get a bit stale. He or she will return refreshed after doing whatever it is that interests him or her. I love writing and speaking about my writing. And right now it is a wonderful distraction from caregiving. I want to keep focused on my writing even though Mom needs me so. I need to balance my mother’s needs and my needs.
It has been a tough week. I took my mother to the Memory and Aging Project at Washington University hoping to hear that her short-term memory problems were the result of stroke. After testing her for two hours, Dr. John Morris concluded that this was not the case. He diagnosed her with Alzheimer’s. My father had Alzheimer’s for eleven years, and his end was terrible. He was a very good man and did not deserve to suffer the way he did. The prospect of seeing the same disease through with my mother has been a blow.
After crying a lot, I turned to what I have learned from Lori Patin. When she received her diagnosis, Lori said “I felt like I just wanted to sit in a corner and cry until I died.” Then at a Parkinson’s conference, she heard a neurologist say that no one ever died from Parkinson’s. It turned her life around. She realized: “I’ve got time! I don’t have to let this disease control my life. I can make the best of my life. I can choose to not let this get to me. And, if it does, then I can figure out another way to fight. And another way after that. I can beat this.”
I know we can’t beat Alzheimer’s, but we can make the best of it. My mother has started on Aricept, a drug that should keep her in the early stages of A.D. for two to three years. The early stages are not so bad. Mom has very little short-term memory, but she is there in the present. She is herself. She remembers us and has her personality. She is happy and full of love. She is glad to be alive. We can’t beat this disease, but we can enjoy the present, Mom’s present and our life with her.
Attitude is everything. Mom was a Christian Scientist for a while as a teenager and retains that spirit of thinking positively. No matter what happens she thinks of it in the best way. She takes a positive outlook toward her condition, and I will too. Like Lori, I won’t let this disease control our lives. Mom and I will make the best of our lives. As Lori says, “keep in mind that this is the one life you have and decide to make the best of it.”
Last month a friend died tragically while riding his bike. He had had heart issues in the past and was making a concerted effort to keep his weight down and to exercise. A few days later I read an article in a health newsletter that said: “Excessive exercise, especially if you’re still focusing on traditional endurance cardio like long-distance running, can be particularly troublesome if you have a heart condition.” We wondered if twenty-mile bike rides had stressed Ralph’s heart so much that it gave out. On the other hand, his conscientious program of diet and exercise probably added years to his life.
My husband, Jake, and I are also talking about revamping our exercise programs to fit our changing lives. My husband has hip issues, but the doctor says he can avoid a hip replacement by being careful. Two weeks ago he pulled a muscle in his calf playing squash so he has been taking it easy. We talked about ways he can get exercise while taking it easy on his leg and hip – no simple matter. As for me, this summer I am backing down to playing tennis only once a week instead of three times because I am caring for my aged mother. The less I play, the worse I get. It is frustrating to know that soon I won’t be able to keep up with former tennis partners.
We just returned from Colorado. Four years ago there, we hiked for hours high into the mountains and biked all day. This time no biking or hiking. We were, however, able to take a beautiful walk through a meadow.
Then I think about Lori, so tenacious, so spirited as she tailors her exercise to fit her life with Parkinson’s. I will try to stay as positive as she does and pay attention to lesson number ten: Set realistic, achievable but challenging goals. Goals will move you forward because they create tension between where you are and where you want to go. But, you may have to redefine success. Before you got blindsided by your challenge, you measured success in certain ways. Now your situation may make you measure success differently. Before I had P.D., I was an aerobics instructor. Now I am proud to be able to go ballroom dancing.