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.
Sometimes my husband and I come home from a party just as my children are going out. Well I remember being young and staying out late. Now, in the prime of my middle age, I cannot imagine anything worse. As far as a mood elevator, a good night’s sleep is my drug of choice.
I have made some radical changes in lifestyle in the last ten or twelve years to support my sleep habit. The most difficult change was giving up coffee. I do love a good cup of java. In the old days, coffee was my reason for getting up in the morning. But I read an article that said I would lose ten pounds if I switched from coffee to green tea. (I did lose nine pounds, but that’s another story.) The first two weeks I had terrible headaches. Caffeine is a vasodilator so I guess all the veins in my brain were constricting. Nevertheless I persisted coffee-less because I realized the immediate benefit of not waking up to pee so often. How sweet it is to sleep through the night.
Another change I made is going to bed at the same time every night and getting up at the same time every morning. I clock out between nine and ten and bound out of bed between five-thirty and six. Too early for most, but it works well for me. I sleep so much better than the old days when I would stay up past midnight and then try to sleep in. Light and noise just interrupt my shuteye once the day dawns.
Lori puts a high priority on sleep too. It is one of the spokes of her wheel of attack on Parkinson’s. Parkinson’s Disease messes with sleep big time. P.D. can cause R.E.M (Rapid Eye Movement) Sleep Disorder that creates unique sleep disturbances where people act out their dreams. To them, their dreams are real. When people have this symptom of Parkinson’s dream, it’s not passive. In Lori’s case, sometimes she talks a lot; others she does what she is dreaming. Bob says, “Once I woke her up because she was choking me with the chord from my sleep apnea device. When I asked her why, she said, ‘You’re the dog. I am taking you for a walk.’” It was nothing personal.
Lori’s Parkinson’s specialist, Dr. Michael Rezak, said his patients who do everything right live well longer – everything right means: getting exercise, taking meds and sleeping well. Lori works hard to get enough sleep: “I need a really good night’s sleep so I oftengo to bed at nine. It’s not even dark in the summer. I try to get eight to nine hours a night. If I get eight hours, I am in fine shape but nine is luxury. I take a half hour to finallyget up so I try to wake up slowlyand start flexibility exercises in bed. When I get up really slowly, then I am alsoless likely to have breathing or balanceproblemsas the day begins. As with most people,I am not fullyrested if I don’t get enoughREM sleep.”