There is nothing I like more than a good night’s sleep. Lately that pleasure has eluded me. I am so concerned about my mother’s safety that I lie awake with my stomach in a knot. She has recently been diagnosed with Alzheimer’s so I know that her condition will get worse. Now she is very confused but still with us. She is living in her condominium – which is large, about 4,000 square feet, with four nurses taking care of her. She can never be alone. The nurses are all kind and conscientious people. Two can redirect Mom when she is upset about something, but two cannot handle her. I receive frequent calls and texts about problems. I visit and call and comfort her when she does not know where she is. She likes two of the nurses but wants to get rid of the other two, which she cannot do. I think even she realizes that, as confused as she is.
Her specialist told her she needs to move to assisted living arrangements because she will be safer where they are trained to deal with the exigencies of Alzheimer’s. She said she will think about it but does not want to go. Finally four days ago, she told me she did want to go because she does not want to have nurses anymore. In the assisted living facility, she can live on her own since nurses at the facility will check up on her. Then the next day she told me she changed her mind. She remembers little but remembered that.
I spoke to her primary doctor whom she admires and respects. When she visits him in two days, he will tell her she needs to go to assisted living. Hoping she will listen to him, I have arranged for her to move the next day. I know it will be very difficult: I will have to move a lifetime into three rooms. Dealing with Mom’s emotions will be worse.
No wonder I cannot sleep just when I need that balm most.
Once again, I turn to Lori’s Lessons. I read a quote from Aeschylus that Bob relayed to me: “Even in our sleep, pain which cannot forget falls drop by drop upon the heart until, in our despair, and against our will, comes wisdom through the awful grace of God.”
Then I read on. Bob said, “You can be angry about this stuff or you can change yourself to accept it. It is your choice. You can let it bother you or you can accept that it is simply Parkinson’s. Anyone thrown into this type of problem needs to become a ‘challenge-adjusted’ learner. This means you re-examine your assumptions and honestly assess reality and re-make the plan for each new set of circumstances. If you hold to the old plan to confront new challenges, you’ll just compound the emerging problem.” If I substitute Alzheimer’s for Parkinson’s, Bob is talking to me. Thank you, Bob.
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.
Although the subtitle of Lori’s Lessons is What Parkinson’s Teaches about Life and Love, it isn’t really about Parkinson’s disease. Parkinson’s is just the platform for Lori’s attack on the most difficult problem of her life. I first learned this two years ago when Bob emailed me about writing the Patins’ story. He said: “It isn’t really a story of Parkinson’s but a story of fighting anything thrown at folks and the kind of attitude, help and processes that all combine to deal with any challenge. Parkinson’s is just the platform.”
If I had to sum up all that I admire about Lori in one word, that word would be attitude. Her attitude is remarkable. She is absolutely forthright about telling people her limitations and needs but is never a drama queen. She doesn’t feel sorry for herself. She is determined to make the best of her life and if she doesn’t find the right way to do it the first time, she will find another way. “I am absolutely determined that this is not going to get to me. I will not let Parkinson’s control my life. My destiny is still in my own hands.”
Bob explains, “I was trained long ago in the world of work that you can use any situation to your advantage if you approach it the right way. In this case, with Parkinson’s, we say to ourselves, “We acknowledge that this is ugly, but how do we actually make it work for us?” How do we force ourselves to get into a mindset that says that we can turn this ugly situation to our advantage by thinking about it creatively?”
Lori has thought really creatively and draws upon every resource to take
a 360-degree approach to her problem. Her attack on Parkinson’s is like a wheel crushing down on the enemy. She uses medicines (the rational approach), the spiritual approach, friends and family (the community approach), diet exercise and sleep (the physical approach) and the assistance of caregivers.