Emotional Lability and Future Rage


I keep forgetting that this disease can go on for a very long time. Over such long periods of time, one’s self-image changes; I can feel it to a tiny degree already.

I stopped being a doctor in 1993, but it took me a number of years before I had left the doctor-self behind. And until I did leave it behind, I didn’t realize how much strength it had given me. By three or four or five years from now, this current confident and competent sense of self will be atrophying. Right now, I can recognize my symptoms and realize that I have Alzheimer’s, but I don’t yet identify myself as demented. That will change: the losses will pile up.

One of the future scenarios that scares me is the rages that sometimes accompany mid-stage Alzheimer’s. They frighten and puzzle caregivers because they seem so uncharacteristic of the patient. They can be violent and require restraints. I worry about the suffering those rages would inflict on Marja and others and how that would, therefore, isolate me.

I’ve always been under the impression that these extreme, unwarranted bursts of anger were simply intrinsic and unpreventable. But an Internet article suggested these rages are frequently from anger that has been repressed during the course of the disease and not from some programmed, organic inevitability.

If those with this disease don’t allow themselves to work through their emotional responses, if they have to deny it, if they become confused about what’s happening, and/or they are given no permission to express their perfectly normal anger, then the emotional lability (rapid and intense mood swings) that is intrinsic to the disease is eventually much more likely to manifest as rage.

But, I’m starting in a very different direction, letting friends and family know, trying now to build support for later. I’m talking about it a lot and trying to imagine what future scenarios might be like. And I have a lot of people who are willing to go on the journey with me. Hopefully, that will at least keep my anger manageable.

It does seem, however, that emotional lability is programmed into this disease, and the question is how it will manifest itself. Avoiding the rages may be wishful thinking. It’s one more reason, I think, to stay on this path of sharing my experience.

An author and former physician, Dr. David Hilfiker was diagnosed in 2012 with a progressive mild cognitive impairment. His doctor thought it was Alzheimer's but additional testing proved this initial diagnosis to be wrong. Now David must learn how to come to terms with the reality of worsening cognitive issues that appear to have no cause.

Watching the Lights Go Out

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NY daughterInLaw, thanks for the excellent ideas. I've always thought of myself as being a positive light and voice, and that's how I keep going. It's true that her negativity is about her condition, not me. Thx.
My mom died of Alzheimer's a few years ago. Everybody at the AL place where she ended up in memory care said that people who have sunny dispositions in early life will have the same sunny disposition when suffering from Alzheimer's. She was very slow to anger if ever, almost never became even impatient. She was an angel and everybody loved her. BTW if you have a social person who has Alzheimer's and you think you're doing them a favor by keeping them home with family, mom was a teacher and a former performer with the Sacramento symphony. In fact she was first clarinet. She loved everybody and everybody loved her. Mom absolutely flourished when she went into memory care and had several best friends right from the start. she was always bathed and dressed perfectly right down to the accessories... Obviously things she couldn't put in her mouth. but all of her needs were met daily at the same time. She had activities going on every waking moment. Mom never took naps. She was extremely active and social, she just had no idea of the world was turning. the way my husband and I dealt with the sadness was to keep a constant sense of humor and fortunately there were plenty of angry patients on the Memory Care floor to converse with. I hope we don't go to hell for it but we had so many laughs not at the people but with them. For instance the time my husband said it was time to feed the cat... So he pretended he was putting it into the bird cage. everybody gathered around to watch. Of course he never put the kitty in there, but he was extremely entertaining to the people there, so who got hurt ?...nobody. now we are doing with Daddy who is the polar opposite. No matter what it's always the complaint department wide open. Never a please or thank you, just when are you coming back? And I don't understand why you can't stay longer when we've been there 7 hours. OMG that one I don't think we will survive that's why we're leaving the state. Finished
I want to applaud your courage. Your ability to face the facts your are dealing with instead of going into denial must have something to do with your former life as a physician. It seems to me that you may have let go of the social status you enjoyed but the doctor's mind-set and approach to problems has stayed with you! I wonder if there are psychiatrists or therapists who specialize in helping people who are in the early stages of your disease to prepare for their loss? Is our emotional health something that survives the loss of our cognitive ability?