I do not profess to know a lot about Dementia. I am certainly no authority. I am only trying to survive the daily care of a patient who has this condition.
Watching my husband suffer from Dementia is a great challenge. He not only has Dementia, but he is also blind in one eye and can barely see with the other. He has a myriad of other physical problems. His mobility has declined a great deal in the last two years. He now needs help getting up, going to the bathroom, grooming, and eating. His nights are turned into days, and vice versa, his days most often become nights. He is demanding, sometimes short-tempered, and thinks the world revolves around him. Which I guess for those who live with him, the world does revolve around him.
It takes a lot of patience to deal with him. I have to keep reminding myself that this poor man has Dementia. He was not always like this. Well, at least in some ways he wasn’t. He always was demanding and yes, his world did seem to revolve around him. But now it’s different. Before he could help being self-centered. Now, it’s just a part of his condition.
What I need is a lot of patience. It’s not always easy when he is snappy, or acts like everyone around him is merely there to serve him. However, I feel terrible when I think that he is trapped in his own mind and that there is no way out. His version of reality is not the same reality of others. He lives in his own domain where his parents are still alive and so are some of his relatives who have passed away. Sometimes he calls out to them and asks them to help him. Sometimes it seems that he views himself as very young though he is 85 years old. He thinks his mother is there to care for him and that she is the one who is renting his house for him.
He often doesn’t recognize who I am. A lot of times I am his sister who is deceased. I tell him that no, I’m his wife, not his sister. “Would your sister make for you coffee and breakfast and would she check your sugar level every day?” I ask.
“Then who are you?” he questions. I tell him I’m the mother of all his children. And he’s ok with that until he forgets again who I am. I’ve always been known for my patience. I’ve had to deal with many hardships which demanded that I didn’t loose my cool. Now I know I need to be more patient than ever and very understanding. But sometimes I do lose my temper and snap back to some of my husband’s rude demands. Then almost instantly, but not quite, I regret losing my temper. After all, I have to keep tabs on reality because he is not able to. He has dementia, but what’s my excuse?
You are the 24/7 caregiver of a man who doesn't know who you are.
A man who isn't who you married.
You aren't a Saint, and didn't sign up for Sainthood, but the world expects you to be one.
If that isn't enough of "an excuse" I could go on. (We all know how I can go on).
I hope you have some support. I hope some of the children are close and can help. I hope you can afford some respite such as Visiting Angels or others who can care for him and give you a little time to yourself, but often enough at a certain age we don't even care to leave to get that respite away from home. I hope you will know that things could get even worse, and that you have human limitations. Know yourself well enough to know, to be able to consider that at some point you will not be able to do this care in home.
I am so sorry for all you are going through. Seems we on the forum say that to one another more than anything else. I can't imagine what you are doing because I know I myself am not capable of it, not good enough to do it. Please be easy on yourself, know that you are doing so much more than so many out here could ever begin to even contemplate.
You are allowed to get mad. We are all allowed to get mad. Later come back and say "Sorry I got mad, but I am allowed; it's over now".
Alvadeer, thank you too for your support. and BarbBrooklyn, I do have caregivers sometimes. My son is now helping me as I can't do the physical part of the caregiving. But it is still a lot of responsibility. We are really trying to make ends meet. (((Hugs))).