Last night we took my mother to the baseball game. She loves the Cardinals. When she met my father, she impressed him because she knew all the batting averages of all the players in the National League. We have had the date for a month and talked about it with glee.
Although she gets around pretty well, I put her in a wheel chair for the walk from the parking lot to our seats. She is very proud and hates the wheel chair but relented in the face of the long walk. The skies were looking ominous at this point, and Mom told me, “I’ll cry if the game is cancelled.” A thunderstorm ensued but passed quickly, quickly enough for the game to start an hour late. An 8:15 opening pitch is very late for my mother. Although she used to be a party girl, she goes to bed shortly after dinner in her 93rd year.
The Cardinals took the lead, and then the Red Sox tied the game. Mom was looking tired. I asked if she wanted to leave. She admitted she was tired but insisted on staying. The clock struck ten, the Red Sox got another run and Mom dissolved. Like an over-tired three-year-old, she started crying. She told me she wants her dog back. (The doctor says it is unsafe for the dog to live with her because of her Alzheimer’s so I am bringing the dog to visit on a regular basis.) It is so sad.
Today I returned home to an angry message from my mother. “If you don’t give my dog back, I am never going to speak to you again. He is my dog.” I called the retirement home and was advised not to bring the dog to her today. As with a child, she should not be rewarded for bad behavior. I am trying to help her visit her dog, but she sees me as keeping her dog away from her.
It is so difficult to be the parent to my parent. I have to be strong. Sometimes I don’t know where to turn. Sometimes I feel sorry for myself. I reread Lori’s Lesson number seven for caregivers: The biggest challenge for your caregiver is: to hate the disease, really loathe it, but not resent the person who has it. He or she may know intellectually that it is not your fault, but every caregiver has moments of thinking: “Why me? What did I do to deserve this?” They have to set that aside and move on, for themselves as much as for you. Still, to underestimate the challenge of dealing with their emotions would be not only naïve but potentially destructive.
A few days ago I received an email from Lori and Bob Patin asking for advice. With a book signing coming up, they wanted suggestions for brief remarks. I thought about what I would say: the most important thing about Lori’s Lessons is that it is inspiring. Lori put it in a nutshell when she said “This happened to me for a reason. I have a feeling God wants me to do something with this.” She made this statement on her way home from visiting her doctor who had just told her that he had never see such improvement in a Parkinson’s patient nor did he know of anything like it in the literature.
Lori is a humble person so I do not expect her to tell the audience that her life story is inspiring. Perhaps Bob can say it for her.
I know countless people whom she has inspired, myself among them. As I have struggled to give care to my daughter with epilepsy and my mother with Alzheimer’s, I have reread both Lori and Bob’s words. Their example lifts me up and helps me do what is best for my mother and daughter and for myself. Sometimes I feel sorry for myself, but it helps to hear Bob acknowledge that all caregivers do. His advice also helps me remember to do good things for myself as well as for Mom and Mimi.
To set out to inspire others seems a heavy task. Yet, when I looked up the word in the dictionary, inspiration is also light. In my favorite Merriam-Webster from the 1920s, the first definition of inspiration is: “the act of breathing in.” The second meaning is: “A supernatural divine influence on the prophets, apostles or sacred writers by which they were qualified to communicate truth without error.” The third meaning is the one we most commonly associate with inspiration today: “Act or power of exercising an elevating influence upon the intellect or emotions.”
From the first two definitions, I understand that inspiration should be as natural as breathing and that it comes from the divine. So it is both light as air and heavy with sacred responsibility. Lori’s inspiration is both of these as it elevates us intellectually and emotionally.
This week I have experienced the joys of caregiving. I have written so many blogs about its trials that it is a pleasure to be able to write about the other side.
I wasn’t so sure about blogging when I started, but I really enjoy it. I sit down to write a blog and I figure out what I am thinking and feeling. I keep returning to Joan Didion’s words: “I write entirely to find out what I am thinking.” Sometimes I feel as if I am slumping along, with my feelings hovering like a great black cloud over my head, like that character in Li’l Abner, Joe Btfsplk. When I sit down to write, I figure it out, and the black cloud goes away.
This week I moved my mother to assisted living. At the recommendation of her Alzheimer’s specialist, she has been thinking about moving, but hesitating to do so. The retirement home director advised me to tell her she had to go “because the doctor said.” I couldn’t do that. If it wasn’t her decision to move, she wouldn’t like the new living situation. I took her to her primary physician whom she loves and respects. He told her: “It is time.” She said, “Yes.”
Still I expected resistance. I didn’t get it. I asked the nurse to take her on an outing and then to play bridge so I would have four hours to manage the move. I replicated as much as possible the two rooms that she had lived in out of her seven-room condo. When I showed her the new place, she said, “It is beautiful. It is so big.” Then she hugged me and said, “You are so good to me.”
I have been praying day and night that I would know the right time to move her, that the move would go well, that she would be happy. Lori told me that she asks people to pray for her, so I asked all my religious friends to pray for me. My prayers have been answered.
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.
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.
This week I had a wonderful almost-surprise visit from a friend named Sandy Disner who is a professor of linguistics at USC. On the way to the airport we started talking about language acquisition in children. Just as we reached the drop-off point, Sandy told me that research shows being bilingual forestalls Alzheimer’s four years. With my family history – a father who had Alzheimer’s and a mother with dementia, I got really interested and texted her later to find out the name of the researcher.
Canadian neuroscientist Ellen Bialystock used MRIs to study older, bilingual adults in various stages of Alzheimer’s. In an article in the Manchester Guardian Bialystock reports, “We did a study at the Baycrest geriatric centre in Toronto in which we identified 200 clear cases of Alzheimer’s disease and looked at the patients’ backgrounds to see if they were mono- or bilingual. Then we looked at how old they were when the family noticed something was wrong and when they were formally diagnosed. In both cases the bilinguals were significantly older, by about four years.” She goes on to say, “We did a second study with 20 monolinguals and 20 bilinguals, all about 75 years old. They had all been diagnosed with Alzheimer’s, and they were at exactly the same cognitive level, so you would expect them to have the same level of damage in the medial-temporal cortex. But when we looked at their brains, we found that the bilinguals had significantly more damage than the monolinguals. They had more advanced Alzheimer’s but they were functioning at the same level. That’s the advantage: they could cope with the disease better.”
Not all of us have the opportunity to be bilingual, but Bialystock goes on to say that this research suggests that learning a language late in life is probably beneficial “not because of bilingualism but because learning a language is a stimulating mental activity and a good way to exercise your brain.”
It is exciting to learn that there are things you can do to slow the process of dementia taking over your brain. Lori Patin knows this intuitively and is fighting back. Parkinson’s can cause dementia as the disease progresses, but she is doing everything she can to prevent that from happening. While she exercises her body four hours a day, she also does regular brain workouts. She plays bridge twice a week because this card game requires you to remember all the cards that are played. Just as she strengthens her muscle by lifting weights, she improves her mental capacity by playing bridge and other games that require memorization.
Bob Patin jubilantly emailed a recent article from the Chicago Tribune reporting progress in human stem cell research – a significant discovery proving that adult skin cells can be cloned to produce embryonic stem cells. But more about that later.
Scientific work like this gives Lori hope that a cure for her Parkinson’s disease is within reach. Parkinson’s is a progressive, degenerative disorder that affects the central nervous system. Until now, there has been no cure, only medications that mitigate symptoms. Lori, in her determined, tenacious way, does not sit back and bemoan the lack; rather she believes her cure is just beyond the horizon. Waiting for that cure to arrive, she works hard at keeping her symptoms at bay by exercising four hours a day, taking harp lessons and having a massage, acupuncture and Feldenkrais® treatment every week, among many other things. Her spirits are good because she knows she is buying time until that cure is found.
Allow me to explain the importance of recent research. First, some basics about Parkinson’s. On a biochemical level, a dearth of dopamine in the brain causes this disease. Dopamine is a neurotransmitter that sends signals to the rest of the body to control movement, among other things. By the time symptoms manifest, dopamine-generating cells have been 80 percent destroyed.
Stem cell research is critical to finding a cure because scientists believe dopamine-generating cells can be developed from embryonic stem cells. The Michael J. Fox Foundation, for example, supports work in stem cell research for Parkinson’s, disease. MJF funded the original proof demonstrating that ES cells could provide a robust source of dopamine neurons.
The catch is that only embryonic stem cells, not adult stem cells, can do this,and they are not readily available due to ethical considerations about harvesting cells from human embryos. The article Bob sent, “Scientists clone human embryonic stem cells from two adults,” offers the promise of using adult skin cells to clone human embryos specifically for the purpose of creating these critical cells.
There is always hope. Buying time is what matters.