I have been struggling with terminology lately after reading essays by people who do not want to be called victims or patients just because they live with dementia.
I totally understand. I hate victim theology.
But I am also uncomfortable when I hear the word hero being batted around. Or survivor. As if the world owes gratitude or praise. Why does dealing with a certain disease or a disability make you heroic? Don’t most people deal with something? And what seems unbearable to one person is no big deal to another because everyone’s pain threshold—physical, emotional, and psychological—differs.
I don’t think of Ralph as a victim and he certainly would never describe himself that way. He would say he’s a guy with a memory problem. Of course, that’s not quite the whole story either, but I respect how he sees himself. So I usually don’t say more unless someone presses or unless Ralph is going to be in a situation that might be awkward; for instance his art class teacher knows why he has difficulty finishing each painting and knows she has to tell him he’s ready to move on to the next or he never would—not a simple memory problem but easy to manage. He loves his class. And the paintings once he’s told they are finished.
And Ralph is frankly no hero and has no desire to be one. He does not want to acknowledge anything in common with others in his condition. He won’t attend a support group for MCI/Early Alzheimer’s. He is not interested in educating the public on the condition or talking about it. He also doesn’t have much interest in fighting the manifestations in himself, in exercising his brain or his body. He is going “gentle into that good night” watching the sunset from his chair on the porch.
Ralph is not a victim, not a patient, not a hero. Not suffering from Alzheimer’s or dementia.
I tried out a new term with him the other morning. I explained (for the umpteenth time because this is one fact he chooses not to remember) that, yes, his brain shows the plaque build up connected with Alzheimer’s, that there is no telling how quickly or slowly the Alzheimer’s will progress but so far his meds are holding his memory function steady. He accepted both the facts and the term I offered.
So from now on if anyone asks, Ralph is on the Alzheimer’s spectrum. Not a perfect description, but it works for us.
Alice in Memoryland 
I just entered the spectrum about 60 days ago, so maybe I have the beginner’s perspective. MCI is a good enough label for me and I’m not offended by it. In my case, the psychologist added, “possible Alzheimer’s” to it, but my understanding is that she did that because of my family history more than anything she saw in me at this point. I saw my mother make the trip across the full spectrum. I’m not sure that she suffered a great deal until the last 6-12 months, when she became disoriented/confused/frightened so much of the time. At least for me, I’m certainly not “suffering” at this point. I worry – it’s hard not to – about whether I will progress and when. I especially worry about the effect it will have on my wife and kids if I do progress. It bothers me to be analyzing every little mistake I make all the time. I put the Quaker Oats oatmeal container in the cupboard with the dishes a few weeks back: MCI or just not paying attention? I forgot to shut a gate to my backyard this weekend and the dogs had a fun romp through our suburban neighborhood before I realized they were gone: is that MCI or just a mistake everyone makes from time to time (but that I’d never done before)? I thought I’d lost my keys this morning between the house and my truck because I put them in a different pocket than usual: MCI or just ordinary forgetfulness? I feel more tired than I used to: MCI or just losing some pep with aging? I’ve never been one to just go with the flow, but I know that’s what I need to do – but I’m not doing it. So while I’m not suffering, sometimes I wonder if I’ll drive myself nuts from second guessing everything long before I have time to progress to AD. I suppose all of us with MCI bring different life experiences, strengths, and weaknesses to this, but I wouldn’t assume that all of us are suffering, at least if you don’t define that to include excessive worrying. And my wonderful supportive wife gives me some comfort even with that.
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Thanks for this lovely, truthful description. I admit that as I read it I fantasized that you were actually Ralph because you write about yourself the way I like to think he experiences his life. Best of luck to you and your family as you go with the flow (and/or fight the currents).
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It’s always a bit strange to me that we are so squeamish about terminology when dealing with dementias. If we used the same criteria to describe other diseases – and dementias are a diseased condition of the brain – it would get people all up in arms.
The reality is that our loved ones with dementias do suffer – loss of memory, confusion, fear, loss of independence, etc. – and to dismiss that aspect for them seems to minimize the effects (many of which we really can’t know firsthand) they are dealing with as their cognitive abilities slip away.
I too, though, am careful in my wording because I know we live in such a PC world that almost anything can give offense, even if it is accurate.
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Thanks for your input. I really appreciate how you have provoked me to think about whether Ralph is suffering at this moment…will get back to you on that…
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Yes, I like that – it’s a good description.
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