A Parent with Dementia: Getting Your Mind Around It

[Maddy]

I finally got up the nerve to post this highly personal question to the forum because this group is more analytical and thoughtful than most, and because there's a better-than-even chance that I'm not the only one who's grappling with this issue.

My question is not about care options or support resources, the "36-hour day," or even about the progression of the disease. What I'm having difficulty getting my mind around is the subjective experience of a person who, once vibrant and full of meaningful memories and associations, progressively loses everything that ever gave their life meaning and uniqueness. And how a family member can get their mind around a situation that, by all appearances, is causing a well-lived life to move toward a close in a very cruel, distressing, way.

Over the last several years, I've watched the decline of an elderly mother (90+) who's had a succession of small strokes. She's lost almost all of her communicative abilities, and although her comprehension in the moment is still pretty good and her sense of humor is still there, things don't "stick" for more than a few seconds. So conversation, or even an organized sequence of thoughts, is nearly impossible. She isn't capable of basic self-care. She's lost the ability to do all the things that mattered to her, can't remember most of her background, and has only the sketchiest memory of the people she loved the most. She's "with it" enough to appreciate how much she's lost and is profoundly distressed.

Mom is currently in a very nice assisted living community with a significant amount of extra one-on-one support. (I'd have her living here on the farm if it were up to me, but I've been outvoted on this point.) Recently, I've been getting desperate pleas for help that tear at my heart. She wants to "go home" but can't remember where home is. She says she feels like a prisoner.

Several of my family members, together with her doctor, regard the expressions of distress as just a symptom of the illness. But I can't help thinking that amidst all the confusion there's a kernel of truth, and a very real, and painful, experience. I can't imagine what it must feel like to lose everything--from the memory of your own background and the people that figured most importantly in your life to your personal autonomy and ability to engage in the activities that mattered most. Or what it must feel like to have your genuine pleas for help, however disorganized, dismissed as mere symptoms of illness.

What, from an existential point of view, do you think goes on inside a person who is experiencing the distress of dementia? And how does a family member get their mind around their suffering and the fact that a once-vibrant life is ending so cruelly?

[Pointedstick]

My wife and I each watched our grandmothers go this way. It's the most horrible thing.

The progression is basically childhood in reverse. Your mother sounds like she's at the mental abilities of a 2 or 3 year-old right now. When she reaches 0, she'll die, but there's an endless universe of pain and trauma between here and there. It could take years.

My father in law is a pastor who presided over this kind of thing hundreds of times. His experience is that people die when they want to, and their body almost immediately shuts down. If your mother was a very stubborn and strong-willed person, she might linger for many years. But eventually she'll give up and pass on.

If it were me who was deteriorating, I would without a doubt choose doctor-assisted suicide, and every family member is aware of my wishes. Obviously you can't ethically (to say nothing of legally) make that choice for her because she's lost the mental ability to understand something like that--nor might you want to even if it were legal and ethically permissible.

I'm so sorry.

[I Shrugged]

I am also very sorry to hear this. My wife and I have some experiences but long term dementia was not involved.
At some point, it's just not possible to accommodate their wishes. We all want to do so, but sometimes it just can't be done because the care is too difficult.

[WiseOne]

Maddy, glad to see you posting again though one could wish for better circumstances.

I'm deeply sorry for your pain and your mother's. I also watched this process with my father, who had a series of brain hemorrhages, and I'm afraid I am seeing my mother start to go down the same path.

One medical consideration is that depression often accompanies advancing dementia, not only for the obvious reasons but as a direct result of the brain injury. The symptoms of depression can look a lot like what you're describing. It's all too easy to give up on a 90 year old, but see if you can convince your mother's doctor to at least try an antidepressant. Ideally though, she should get a neuropsychological evaluation first.

Also, sad to say but it is possible the care she is getting on a day to day basis is not kind or attentive. Staff at these homes are underpaid and overworked, and patients who need total care are just too much to handle. Again, I saw this repeatedly with my father. The next time you visit, spend as much time as you can with your mother and observe how the staff treat her, and also watch carefully for things like decubitus ulcers, skin tears and bruises from rough handling, whether they serve meals on time and help her eat, etc. If you can detect signs of this and show it to your family members, that might encourage them to change their mind and let your mother stay with you (assuming you are in fact prepared to handle this). If your family members are worried about financial implications, i.e. will you end up taking the lion's share of your mothers' savings, you might do well to start an open discussion.

The only other piece of advice I have is to enjoy what your mother still has: her sense of humor and ability to interact with you. Even toward the end when my father was cortically blind and completely aphasic (mute and unable to comprehend language), he still had his signature smile. I didn't realize until after my father passed away how much this meant to my mother.

[Jack Jones]

What, from an existential point of view, do you think goes on inside a person who is experiencing the distress of dementia? And how does a family member get their mind around their suffering and the fact that a once-vibrant life is ending so cruelly?

I can only imagine, but even absent all of the usual context that we carry around with ourselves, there is still the experience of being alive. I can look at the houseplant next to me and imagine that even if I didn't know what it was, I could still enjoy being in its presence. Even if I lost all of my musical context, I imagine I might still enjoy listening to music. Unfortunately as we age our senses also diminish, but perhaps there is still room to have hope that some aspects of your grandmother's experience are worthwhile to her. So perhaps be careful not to project your own judgement of what her experience must be like. Maybe it's not all distress and suffering, and she would still prefer this over the alternative.

Edited to say: apologies if this is insensitive in some way

[Maddy]

Thanks for your thoughts, everyone, and no need for condolences.

It's a disconcerting thing, for sure--sort of like experiencing a death in slow motion. I do tend to perseverate about the existential aspect of all this. We spend a lifetime honing our identity--our consciousness of self in the world. What form does consciousness take when all the normal trappings of identity are gone? It's a puzzling question.

I think too much, I'm sure.

[Mountaineer]

Thanks for your thoughts, everyone, and no need for condolences.

It's a disconcerting thing, for sure--sort of like experiencing a death in slow motion. I do tend to perseverate about the existential aspect of all this. We spend a lifetime honing our identity--our consciousness of self in the world. What form does consciousness take when all the normal trappings of identity are gone? It's a puzzling question.

I think too much, I'm sure.

Your question is one of mankind's oldest. For me, the object of my faith is Jesus and his promises; my faith enables peace and comfort that is beyond cognitive understanding even as I am saddened by watching loved ones slowly fail and die. I know I will see my loved ones again, all of us with a perfectly restored body and soul in the new creation which will last forever. For me, Revelation 21 inspires hope like nothing else can, no matter how terrible our suffering is in this world. It will be awesome once we do not have to deal with the consequences of sin with suffering and death being the big ones.

Edit: Maddy, I can somewhat identify with what you are asking. I neglected to mention that I watched my grandfather, a brilliant man (highest IQ ever recorded by the US Army testers at the time, WWI recruiting in the southwest) slowly slide downhill after multiple strokes. He got to the point that he could not remember which end of a filter cigarette to light. I watched my mother, also very smart, deteriorate during a long episode with Parkinson's. I look forward to being with them again.