10 Absolutes in Dementia Care

Dear Pachana,

After four yeats of this March (it is not a journey) I fail at every one of these rules at least once a day. The biggest thing, I believe, is that a caregiver must give her/himself the forgiveness to do the best you can and the grace to know you will not always succeed. All of these are wise precepts, but they can be a strangle hold. What I have learned is necessary in caregiving is first, a sense of humor; second a willingness to try, fail, and forgive yourself over and over again, and third, the ability to put your needs ahead of the person with dementia. No one can make the rules for your situation but you. Because no one else is living what you are going through. God bless.

Kate

I'm scared shitless. After 52 years of working, I was forced into retirement at the age of 69 about a year ago. At the time I was made to retire, my daughter pressed that we have her mother evaluated for dementia because of her noticeable forgetfulness, which she too acknowledged. We took my wife to a respected neurological group specializing in dementia. After several months of tests, MRI's, Spinal Taps, Tests and more Tests, as well as seeing several specialists in the group, the verdict came out early stages Alzheimers. She just went in for a 9 month followup which came out pretty well, but some decline. Mostly a loss of 20 lbs of weight she couldn't afford to lose.

Since her diagnosis there have been some behavioral changes that have proved to be frustrating. The two top rules are never argue, never reason, which contradicts the very aspects that got me through life. Are the terms of having to successfully deal with this disease, having to give up one's own metal well being, compromise one's own sense of mental health? It's like an entity is invading the person who I married, the person I shared 40 plus (46 years now) years of my life, and transforming her into someone else; a person I never knew. Alzheimers is changing her into someone who'll sit on the bathroom floor for two hours picking out microscopic black threads out of the bath throw rug. This is something she'd never do. She sat there two solid hours before I asked myself, where'd she gone off to? On top of the strange things she's started doing there is an ever growing list of things I am not allowed to do. It seems I can't do anything correctly. For instance we have a receptacle for trash in the bath, but I'm forbidden to use it. This alien person that's emerging sometimes drives me crazy, and there is no one I can talk to. And now according to these rules I see I can't argue, and I can't reason? Oh God how I know I can't reason with her. She was a mathematical genius and had scored a 99% score on the FAA's test for Air Traffic Controller, the second highest score in the US for the nationwide test she took. And now I find its a challenge to explain things to her; she's sometimes not grasping simple concepts, and its exasperating because she and I never had trouble communicating.

Professionally I had been an engineer working in a large corporate environment. My work meant to survive one had to be able to to confront, to argue, to demonstrate why my ways might be better than another's approach. Reason, and rationality was the basis of my life. Its how I survived life, and especially how I survived having been born into an extremist fundamentalist religious cult. To survive meant seizing control of my life and standing up for myself. Cults have a way of beating one down. I had to scrap to avoid being absorbed. But in dealing with my wife's illness requires much more from me than empathy. It kills me to see her fear losing herself and I try to be there and comfort her. But on the other hand I'm being driven crazy by the amazingly senseless things over which I seem to have to concede.

I have no one to turn to. Since her diagnosis last year its become clear my kids don't want anything to do with the circumstances and now I'm 70 and not in ideal health condition myself. I've had heart issues since 2016, and a bad back. In 2020 I had a touchy, bilateral knee replacement, had blood clots which complicated the surgery. Now I have to confront this terrible disease alone. I'm scared shitless and depressed, and its not like I hadn't some experience with this disease, and a good idea of what lays in store. My great grandmother (I knew her well, I was 13 when she died), my grandmother (who died when I was 41), and my mother all had severe dementia in which their cognition degraded to the point where they didn't recognize close family members. I know about the incontinence, the getting lost, the not knowing where they are.

Alzheimers also ran in my wife's family. Besides some of her paternal Uncles had Alzheimers, my wife's dad died from Alzheimers in 2009. At the very end of his life he became stubborn and refused to eat and wasted away until he died. My wife is a lot like him. Always thin, she lost 18 lbs since last September, and food has never been important to her. (Ironic since she worked as a chef for eleven years) Very slim her entire life, last week at the docs was the first time in our 46 + yr married life that her weight slipped to under 100 lbs. Even the doctor expressed some concern. And I know we've just started with years of more ahead. This is an awful disease that strips a person from their dignity.

Now I feel like I have to bear up to the challenge alone. Some years ago my daughter had encouraged the idea of purchasing a mother daughter arrangement, but four months ago my son in law came into a substantial inheritance, my daughter doesn't even want us near them. It seems as though she wants no part in the challenges ahead. Since their marriage 15 years ago they lived only 5 miles away but now they're planning on moving to a larger place (which they really need). There's no more talk of a mother daughter arrangement. I sometimes feel so frustrated I want to scream. or cry Yet I feel there is really no one I can turn to. Even my counselor, for all her great insight, and who was the one who suggested this forum, doesn't understand what it is to live with Alzheimers. What do I do?