Americans crave independence. The concept colors our sense of history and our visions of the future. But people with dementia — and their families — often find their independence thwarted by the disease. In time for 4th of July, the Penn Memory Center has launched www.makingsenseofalzheimers.org a new website with videos, music, and stories that may aid families bewildered by dementia.
Working with the team developing this site has been a great privilege for me. I’m grateful that they decided to publish a piece I wrote about mediation and its benefits for caregivers. I hope you’ll take a look at the article called “The Struggle for Peace of Mind.” It also features one of my favorite photos of my mom.
Since the Making Sense of Alzheimer’s site is still in development, I would love to hear any reactions (good or bad!) to the various videos, radio pieces, and stories now online. Please send suggestions about items you’d find helpful, informative, or entertaining as you face the daily challenges of dealing with dementia.
While you take a look at what’s offered, I’m also sending out a wish that your Independence Day experience brings you fireworks, friendship, and new sources of needed strength.
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.