Loading discussion content. Please wait...
I Have Alzheimer’s or Another Dementia
My life now
Since it's a new year I called two of my late mother's friends who are in their nineties. They are in bridge clubs, did tournaments and now play bridge online due to the pandemic. I traveled the other day with another woman in her nineties who does volunteer work with veterans--"I don't like to sit down, I have to stay busy!" My 80+ year old cousin also has a busy social life. I got to feeling bad about myself because my life is the opposite. What I do is sit around and do nothing. But actually I don't do nothing. I do manage to get a few chores done, very few. And this is because of my illnesses which are mostly invisible, even to me. I am not in pain. I just have no stamina and no initiative and I can't remember much. I don't have Alzheimer's Disease but I experience a lot of its attributes. I have to keep reminding myself of my motivation, which is to maintain my independence and not to be a burden on my family. Our culture tells us we have to be busy to be worthwhile. I can be worthwhile without being busy! This is MY life! I have to make my life comfortable and workable for me! I refuse to feel bad about myself!
I don't think anyone should be made to feel bad about themselves. (except maybe people who hurt others)
Besides - in the short time I have been involved in the forum, I have seen that you have certainly been a blessing! and that is certainly NOT 'doing nothing'.
In any case - I appreciate you!
Thank you for reading and being supportive, Susan. I must make clear that no one else was making me feel this way, this was my own thinking. But I believe it came as a result of our American culture to value those who are busy and always doing something. It is noted all the time in the boards how friends and even family members withdraw from PWDs who cannot keep up at their former level of activity or conversation.
I have posted often that I believe PWDs should live in a bubble, because they cannot keep up. I spent all night pondering this. For me, living in a bubble would mean making a major break from society. Covid restrictions have instituted bubble-living involuntarily, but these will be temporary. How will I live after Covid? Will I stay in my bubble without a Covid excuse?
Also, PWDs seem to do better in a Ground Hog Day life, where everything is the same. I know I function better with sameness. But this type of life is abhorred by just about all the caregivers who post, indeed they want and crave variety to their days. I am coming to realize that I can't handle variety too much.
This is more of an existential realization for me. Is this how the rest of my life will be--in a Ground Hog Day bubble? I think yes, but it has to be okay for me. Living this type of life will increase isolation--how to avoid more loneliness? A conundrum.
Hi Iris! I don’t think living in a bubble is a bad thing at all. I’m only 46 with no cognitive issues and I prefer life as ground hog day, lol. Maybe I’m a homebody or a bit reclusive, who knows. I’m retired from law enforcement and several of my coworkers are exactly the same. We’ve seen some of the worst in society and prefer to remove ourselves to our own private sanctuary in our homes. The thing I love (not that I love the pandemic) about the pandemic is I can use it as my excuse for not getting together with others and staying home. I’ve seen how awful it has been for those that are used to being super social and active to have to curb their connections and I feel bad for them.
Anyway, don’t judge yourself on how you think others see you or how you think you ought to be, there are plenty of us out here that love our seclusion
Also, I’ve read your replies in many of the posts and you have a ton of experience and a lot to offer and I for one appreciate it!