Several weeks ago Ralph and I sat down with a bowl of popcorn and watched the program “Alzheimer’s – Hope for Tomorrow – Help for Today” on our local public television station. Ralph’s doctor was featured as well as a member of Ralph’s support group.
Despite the optimistic title and some upbeat patient interviews, the program didn’t sugarcoat or patronize those of us in the trenches. After all, for all the studies and research and media attention, the known facts are pretty clear-cut: There’s no sure way to predict when/if MCI and early Alzheimer’s will develop into full-on Alzheimer’s; and there’s no cure despite the drugs and lifestyle changes that slow down the progression for some but not all patients.
It was like watching a car wreck; only the wreck involved my car. I couldn’t tear myself away.
Ralph watched all the way through too, but when I asked him what he thought he said he hated the program. His exact words were “It’s all crap.”
He didn’t want to identify with the people he saw on the screen, even those who seemed to me even less impaired than he is.
What probably put him off most—what frankly made me squirm sitting beside him—was the constant referral to both Alzheimer’s and MCI as dementia.
I have been squirming ever since. DEMENTIA. That’s how to describe Mrs. Rochester in Jane Eyre, the crazy woman in the attic, or my 96-year-old mother in her worst moments. Not Ralph, my careful, rational husband, a fact man who loves historic detail and likes nothing better than to analyze current events. It has never occurred to me to use that scary word dementia for Ralph’s condition…or only in anger and before his MCI diagnosis (when I so easily tossed around damning words that choke in my throat now).
It has taken weeks to steel myself to look into the definition of dementia in terms of MCI. The U.S. National Library of Medicine site lays out the parameters very clearly:
“Mild cognitive impairment (MCI) is the stage between normal forgetfulness due to aging and the development of dementia. People with MCI have mild problems with thinking and memory that do not interfere with daily activities. They are often aware of the forgetfulness. Not everyone with MCI develops dementia.
Symptoms of MCI include:
- Difficulty doing more than one task at a time
- Difficulty solving problems or making decisions
- Forgetting recent events or conversations
- Taking longer to do more difficult mental activities
Early symptoms of dementia can include:
- Difficulty with tasks that take some thought, but that used to come easily, such as balancing a checkbook, playing games (such as bridge), and learning new information or routines
- Getting lost on familiar routes
- Language problems, such as trouble with the names of familiar objects
- Losing interest in things previously enjoyed, flat mood
- Misplacing items
- Personality changes and loss of social skills, which can lead to inappropriate behaviors”
No surprise that Ralph hits the mark for all four symptoms of MCI.
As for symptoms of dementia, he’s a mixed bag. Fortunately, he does not exhibit any symptoms of moderate dementia so I didn’t reprint them. Comparing him to the early symptoms list I can say confidently that he has no language problems, at least less than I do, and that he doesn’t misplace items any more than he always has, although finding his razor in his sock drawer this morning was perplexing.
He can still drive his tractor and do carpentry repairs. But there’s no getting around that he can no longer do mental tasks that used to come easily–forget balancing a checkbook, he struggles following a movie. He is beginning to forget how to get to once familiar destinations, so I am going with him to get his teeth cleaned next week. And his personality has definitely changed. My “to the moon Alice” Ralph has transformed in an easygoing, appreciative, sentimental, even docile Ralph who is also withdrawn and fearful of anything outside his daily routine.
Although there’s no way to avoid checking Ralph’s behavior against the definition of dementia from now on, I am not ready to add dementia to the vocabulary of my marriage (a resistance I’ll explore in a future blog). And I don’t believe I have to.