Early in life, teachers would look at me and say, “Huh? You think what?” I don’t know why my perspective on things seems so odd to other people, but it has helped me find silver linings in the tough process of caring for my mom. Then a recent story about a woman with Mild Cognitive Impairment (MCI) or Early Stage Alzheimer’s helped me see how a patient could also use their unique point of view to help them deal with challenges posed by the disease.
“Living Positively with Mild Cognitive Impairment” paints a portrait of Toni Hamilton, a woman who has adopted a valiant approach to her illness. The article describes the ways she has changed her schedule and her expectations of life, so she can deal more calmly with memory problems as they arise. Many of the changes she embraced grew out of her experience in a Cognitive Fitness class where she met other people dealing with the same diagnosis and similar symptoms. From the start, Toni took a pro-active approach to the disease by learning meditation techniques that helped her manage the stress created by her illness (and life, in general). The class also helped her set up a daily routine that includes yoga, brain games, walking, and other healthy habits that may help to forestall the advance of more serious problems.
In the article, Toni admits that she “wants to know what’s going on….and not be patted on the back by someone saying…’you seem perfectly normal’…” She has also expressed her fear of “not knowing when changes occur.” Though her lifestyle changes have helped her to stay upbeat, she remains afraid that she won’t realize what’s happening if she slips into Alzheimer’s.
The full text of the article, written by Barbara Overholser, appears in InSight, a publication of the Penn Memory Center. Full disclosure: I sometimes write articles for InSight and the Penn Memory Center. Though I didn’t write the one described here, I had the pleasure of interviewing Toni last summer for a different project. What impressed me most about her was the fact that she seemed to be drinking life’s full cup of happiness in a situation that might knock others into a state of depression. As I see it, this is the true benefit of developing your own, custom-made perspective on life. It’s very hard to ignore the ugly things we know about Alzheimer’s when dealing with the early stages of memory decline. But Tony shows us that it is possible to embrace the good in life even when we feel threatened by what could happen in the future.
If you are scared about what you see happening to someone you love, read this article and see if Toni’s story offers something to help shift your perspective. In her conversations with me, she said she doesn’t know where she is “on the symptom spectrum” but she doesn’t worry. She used to be an “Olympic quality worrier” but she knows that medically she is in the best hands and she can’t let worry steal her happiness. In my opinion, Toni also provides an example of Olympic quality courage.
When my mom got sick, I knew I’d end up doing many things for her. In doctor’s offices we saw people with advanced cases of dementia that scared me. I had to stop myself from thinking about the future since it looked so bleak. But in addition to the jobs I expected to get stuck with, there were more I didn’t foresee. At this time of year they take up lots of my time.
Arctic cold filled our stream with isles of ice
- Fiscal Manager — It’s amazing how much many hours it takes to manage the details of my mother’s finances. When she told me many years ago that she had assigned me her Power of Attorney, I had no idea what that really meant. I also failed to realize how much of each week I’d spend paying her bills, keeping track of her insurance claims, and organizing her financial records. Doing it for yourself is something you get used to as you get older, but when you add the task of doing it for someone else, it starts to feel like a full time job. Sometimes I believe I am singlehandedly keeping the U.S. Post Office in business. (Though I know some of you are helping me!)
- Tax Accountant — As soon as the ball drops on New Years’ Eve, the tax year changes. That means I have to start putting together the receipts for filing my Mom’s tax returns. I hate doing my own taxes, mostly because I operate a business. I’d much rather write and do the work my clients ask from me than sort through transactions — doing the work the government demands from me. Paying taxes is something I accept as part of life. It comes along with stopping at red lights, doing laundry, and shoveling snow. But thank goodness I don’t need to keep a record of every time I hit the brakes or wash the sheets. It’s not the work, it’s the paperwork that kills me.
- Property Manager — My mom wasn’t rich, but she did own a home that sat empty after her health declined and she moved in with me. We realized that this asset shouldn’t remain vacant because it could generate income to pay for more intensive services she’d need as her disease advanced. For me, this has meant learning about leases, advertising for tenants, and figuring out how to choose responsible ones. It also meant that during last week’s arctic freeze, I had to drive an hour to interview new applicants, spend long afternoons cleaning the place, and rush home in howling winds. This is all part of the job of keeping a steady income stream there for my mother as her need for medical support rises.
When I write this list down, it actually looks pretty short. But as I carry out these responsibilities, they seem never ending. What I hate most about these jobs isn’t the hours they take away from my daily routine. I am far more resentful of the time they steal from my relationship with my mother. These are afternoons I’d prefer to spend in her sweet, childlike company. At this point, we don’t have a minute to squander. So I must remind myself that 2014 cannot be a year of drudgery. It needs to be a year of cherishing the moments still left to us.