My mother has dementia and part of her condition is that she obsesses about things. Lately she has been obsessing about her jewelry. Because her assisted living facility has a policy preventing guests with dementia from keeping valuable jewelry in their rooms, I put my mother’s jewelry in a bank safe. In a rational moment, she thought this was a good idea. Now, however, she wants it in her room and says she doesn’t care if it gets lost or stolen. She called and left an angry message saying she didn’t want to see me if I didn’t bring it to her.
I know this is just her dementia talking. She used to have such good judgment. She obsesses about other things too. She called a friend about a ride to bridge three or four times and me just as often. But it didn’t hurt my feelings when she was worried about her ride: she wasn’t angry at me over the ride.
I spend so much of my time taking care of my mother that I have become the boss in her eyes. She knows I am in charge of her life now, and she doesn’t like it much. (Neither do I but who is going to tell her that.) When she gets angry over her loss of control, she lashes out, sometimes at me.
It really hurts. I need to separate myself for a few days when she does this because I feel sorry for myself and that can translate into lashing out right back at her. I do a little self talk where I remind myself that this is her disease talking, not my mother. I get some exercise. Eat some chocolate. Remind myself how loving and appreciative she can be. Reread Lori’s Lessons. Whatever it takes to get my equilibrium back.
Lesson number 20 resonates with me now. 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.
Last night I ran into a friend who has been following my blog. He asked how my mother was doing and remarked that Alzheimer’s is really tough. So it is. This past year, this past summer has been challenging. Again and again I turned to Lori’s Lessons to remind me how to keep a positive attitude, to accept help, to take care of myself when I can. I have not read the lessons for a few weeks – because my mother is doing so well. Since she moved to assisted living, she has gotten steadily better.
I agonized over moving her. I hated taking her out of familiar surroundings. Yet she wasn’t happy there. She kept telling me she needed to go home even though she had lived in this same condominium for fifteen years. She had kind and conscientious caregivers, but she kept saying she didn’t want them anymore. I was over there five days a week managing the nurses, Mom’s issues, the doctors and her home, and I was exhausted. I consulted a geriatric specialist, her internist and a specialist in memory care. All said she would be better in an assisted living with staff trained in memory care.
She has thrived. My mother is a different person. On her second night in her new rooms, my husband, daughter and I visited with her on her terrace. She already seemed alert and happy. It was such a change from visiting her in the condo where she seemed confused and remembered little. On the way home, my daughter said, “She has something to talk about now.” In her condo, watching television all day put her into a daze. Now she goes to exercise class in the morning, eats lunch with a friend, plays bridge in the afternoon, then goes to cocktails and listens to music before dinner with friends. She has a new best friend, and they laugh all the time. They both repeat themselves, but it doesn’t bother them since both are telling stories over and over. Now Mom remembers things. She is winning at bridge, a game that requires memory power. She even has better balance when she walks.
I feel as if the weight of the world has lifted off my shoulders. I still visit three times a week because I want to spend time with her. I just received page proofs for my new book and am spending long days reviewing them. Before her move, I would have taken time from work to visit even though I had no time to spare. Even when I was tired and stressed, I felt I had to go because Mom seemed so pitiful and there were always problems for me to resolve. Right now it helps to be able to spend the whole day at my desk.
It is such a blessing. A miracle.
Lori’s lesson that resonates now is number 7: “Be grateful for every gift. I say a prayer each time I look at the flowers that grow from the seeds I planted.”
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 night I took my husband Jake to Blueberry Hill for his birthday. We were able to see Chuck Berry perform in the Duck Room after trying to get tickets for five or six years. Since Chuck performs only once a month, you have to gp online immediately as soon as sales start to buy tickets. It was worth the wait: Chuck is 87 and still rockin’ and rollin’. I loved his music when I was a teenager and he was wild and free. I loved him yesterday too. This is certainly a tamer Chuck than the guitar legend. We sat front-row-center and could see how management puts a list of songs with keys in huge letters on the floor. He got the key wrong once anyway to the annoyance of Charles Berry, Jr. who performs along with his Dad and sister Ingrid. Right key, wrong key, April 23rd was Chuck’s 203rd consecutive performance at Blueberry Hill. How cool is that?
A lot of people his age would be resting on their laurels with their feet up in front of the television. Instead he is singing and playing the guitar for over an hour, sweating under the hot stage lights. Even putting one foot out and sliding on the other in a modification of the dance he pioneered – the “Duck Walk.”
That’s why I admire Lori so much. Like Chuck who won’t let the diagnosis of advanced age put him out to pasture, she is living her life to the fullest despite the diagnosis of Parkinson’s. When she first heard she had the disease, she says, “I felt like I just wanted to sit in a corner and cry until I died.” Then something powerful happened. She realized Parkinson’s would never kill her, so she determined to make the absolute best of her life. And she has. “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.”