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.
Big Data frightened me. Just what is Big Data? The Wikipedia definition is “any collection of data sets so large and complex that it becomes difficult to process using traditional data processing applications.” It makes me think about the Government spying on everything in my life.
Recently, however, I received news about Big Data that changed my attitude. Because I feel so blessed to have been able to work with Lori and Bob Patin, I donate my royalties from Lori’s Lessons to the Michael J. Fox Foundation where it is used to aid Parkinson’s research. I want my book to improve the lives of Parkinson’s patients in every possible way. As a result of my contributions, I received a letter about MJF teaming up with Intel for an amazing new, Big Data study.
In this study, cellular research on Parkinson’s patients goes hand in glove with research in which patients are equipped with wearable devices that will capture data about their symptoms – slowness of movement, tremors, sleep disturbances – round the clock. In other words, biological research will be matched with clinical data. The report says MJF will “analyze that data to gain new and deeper insights into the nature of PD.”
Lori’s Parkinson’s specialist, Dr. Michael Rezak, believes that “We are not that far from a cure.” Lori works 24/7 combatting her disease and remains ever hopeful because “I am buying time until research finds a cure.” That may come sooner than we thought.
Six months after my daughter Mimi was diagnosed with epilepsy, we finally had a breakthrough. I had told a friend, Barbara, how Mimi was struggling with the limitations of her condition. She just wanted to be a normal teenager – which means doing a lot of things that can cause her to have seizures. If she had been a little girl, I could have disciplined her to act within the limitations of epilepsy. If she were an adult, she would have the judgment to do so herself. Unfortunately, discipline and judgment are not teenage virtues. Barbara had a friend whose daughter, now in her late twenties, had come down with epilepsy as a teenager. Barbara put us together.
Talking to someone else with epilepsy was a revelation to Mimi. She heard this lovely young lady talk about how difficult it is to have seizures. How embarrassing. How she would be afraid of having one whenever she went to a party. She talked about going out and drinking and then having a seizure the next morning as the alcohol wore out of her system. She was so open with Mimi. Mimi hung on her every word. This young lady now only drinks one beer at a party and gave Mimi examples of witty comebacks when people ask why she isn’t drinking. Mimi walked away standing taller than I had seen her in a long time. For perhaps the first time, Mimi could see herself getting a grip on her condition.
Yesterday I had lunch with Barbara. I hope I was able to return the very great favor she did me two years ago. Someone very dear to Barbara also has seizures. I was able to share our experience with the drugs Mimi has taken. I hope it will help.
I reread Lori’s lessons. Two have made a very great difference in my life. The first is to be very honest about your condition. Lesson 8: Own and accept your situation. Don’t deny full ownership or lie to others about it. Being honest with yourself about your challenge allows you to confront it rather than to hide which just wastes time, energy and resources. Being honest with your friends draws not scorn or isolation but sympathy, prayers, resources and ideas to support your fight. You will be amazed at the forces that come your way if you just share your story. Because I was open and honest about what was going on with Mimi, Barbara could throw us a lifeline.
The second is to seek out friends and communities that will nurture you. Lesson 9: Seek out communities that will nurture you. Communities are an extension and reflection of the family and they enhance life. Belong to a community and it will celebrate with your joy and commiserate with your pain. You need the members of the community for support, and they need you as a good example. Expect to be responsible to and for the community, just as it is responsible to and for you. Isolation is a killer and inclusion is a savior. This applies to everyone, not just people struggling with medical conditions.