I read this fascinating and inspiring interview in JAMA written by a neurologist whose Alzheimer’s was diagnosed 8 years ago. Although he is now retired from practice, Dr. Daniel Gibbs continues to teach about Alzheimer disease through his writing and speaking engagements. His first article in JAMA was 3 years ago when his book about living with Alzheimer disease, A Tattoo on My Brain, was published. A short documentary based on it is now available for streaming, and he recently published a collection of essays entitled Dispatches From the Land of Alzheimer’s.
In the interview, he points out that the pathology in the brain of Alzheimer disease begins about 20 years before there’s any cognitive impairment. Dr. Gibbs has now had the diagnosis for 8 years and is still doing relatively well. My husband too had nearly 8 years of relatively mild impairment. He stopped practicing medicine the minute he got the diagnosis, even though his symptoms were mild at the time. For several years, it was more like living in the movie “Finding Dory” and then later, “Fifty First Dates.” Part of the reason was that like Dr. Gibbs, he was so brilliant, his intellect could compensate for some of the cognitive loss. Now that I have had time to reflect, I realize that I had warnings about my husband’s illness long before it was obvious. Untreated sleep apnea was likely part of the problem, and if I had understood that back then, I’d have made sure that was controlled. We could have made lifestyle changes that would have helped. Dr. Gibbs discusses the things that he does to slow progression – such as controlling his cholesterol levels and following the MIND diet.
Dr. Gibbs knows what situations to avoid, such as parties with lots of people, but he still does well one-on-one. He reads books and watches movies that have a limited list of characters so he doesn’t get frustrated trying to keep track of them. My husband could not handle movies that switched timeframes back and forth. (It only took about 15 minutes of the movie “Inception” for him to say, “You are kidding me! I am done.”) However, I think he might have been right about that movie…) Like Dr. Gibbs’ wife, I had to turn off the gas burners on the stove, and I got special hinges on the doors to the outside of the house so that they closed automatically.
A big difference between Dr. Gibbs and my husband has to do with insight. Eventually my husband lost insight into his dementia, and I suspect that is typical. That actually made life easier for him, because he was no longer frustrated about forgetting things, or worried about the impact his dementia had on the family. He entered a world in which he was “fine” and I was the problem. I was the one who took away the car keys and did other inexplicably cruel things. It is a humbling experience to accept unfair criticism without attempting a defense. “You are correct, I am a horrible person,” was about all I could say. In fact, I learned a lot about myself from my husband’s dementia, and much of it was not pretty. I learned how shamefully impatient I am with people and how fundamentally selfish I am. I discovered that the real problem with my husband’s dementia was ME.
There’s another issue that was on my mind as I read the most recent JAMA interview with Dr. Gibbs. My husband was a wonderful, caring physician and I felt he had a legacy that was worth preserving. As he began to lose insight into his illness and his own increasingly odd behavior, I wanted people to remember the wonderful, caring person he was and not the strange person he had become. Gradually we had to stop going to social events, then we had to stop going to church, and then eventually I would allow only immediate family to see him. These are difficult decisions for family members to make about a loved one. However, I felt it would be a betrayal to have people remember my husband as he was, ravaged by dementia, rather than as the brilliant man that he had once been.
I found Dr. Gibbs’ story inspiring, and the resources he discusses may be useful to the growing community of people suffering from dementia and the family and friends who live with them. I do hope that the next time there’s an article in JAMA about Dr. Gibbs, it will be an interview with his wife.
Related post: 10 Things My Husband’s Battle with Dementia Taught Me – Caroline Fife M.D. (carolinefifemd.com)
Dr. Fife is a world renowned wound care physician dedicated to improving patient outcomes through quality driven care. Please visit my blog at CarolineFifeMD.com and my Youtube channel at https://www.youtube.com/c/carolinefifemd/videos
The opinions, comments, and content expressed or implied in my statements are solely my own and do not necessarily reflect the position or views of Intellicure or any of the boards on which I serve.
