The loneliest part

This is something I haven't wanted to write about, because it is not primarily my story. It affects me a lot though, and so I sometimes find myself blurting things out about it when I don't mean to. Maybe it's just better to get it all out there.

For a while now my mother has been having memory issues. At first it seemed like just absent-mindedness, like she would ask the same question five times, but maybe she wasn't really listening for the answer because she was thinking about other things she needs to do. She has said that she is always thinking a few steps ahead - which I do too - but she hasn't been as good at tracking it anymore. We did a cognition test with a neurologist about a year ago, and she was diagnosed with dementia.

It is not Alzheimer's. She knows us and herself. It is more that new information does not register reliably. She will tell the same story multiple times, which isn't really that unusual for an older person (I know she doesn't look 72, but she is), but she will tell it three times in a single conversation instead of just every time you visit.

She is stable, and she could easily stay stable for another ten years. However, in that stability, she still doesn't know what you have told her. She has a hard time keeping track of days and dates or what has been done already. Sometimes she will just not believe us.

There's a certain amount of stress to this. It can be tiring repeating the same thing, but then when she has gotten a wrong idea into her head, and you keep correcting her she can get really angry, and that's exasperating.

It is mostly mine to deal with. I am home during the day because I telecommute. That is one reason why I don't think looking for another job could be a good thing right now. Getting established anywhere else would almost certainly require going in, at least for a while, and I can't think that would be good.

It is also more mine though because I am more patient. Depending on which sister, they can often lose their temper or be condescending. It is really frustrating, and I lose my temper more than I should too, so I get that, but I can still hold onto it better. (For the condescending one, that just goes with some other problems.)

That is hard in many ways. I worry about her when she is going somewhere. We limit it, possibly more than we need to, but she still needs to be allowed some dignity. She is still a good driver, and can get to familiar places. A wrong turn could really throw her, so we installed a tracking device in her car, which we haven't needed to use since it's been in there.

I worry about her in social situations, when she is repeating the same story for the third time. Will people be understanding with her? She can still talk. She should be able to visit.

I worry about if she will get worse, and how bad it can be. Her mother and one of her sisters both had Alzheimer's. That could be in our future. It could be in mine, for that matter.

When I have mentioned needing to research diet things, part of it was for her arthritis, for quality of life, but part of it was for memory. There were claims out there that you could completely reverse Alzheimer's with diet, and okay, this is a different form of dementia, but it's still something to look at. Coconut oil was touted, but no complete reversal there. Then you dig down and this time the miracle ingredient is Omega -3 fatty acids, but those are just for helping delay the onset. Where's my complete reversal? I kind of knew it was too good to be true, but you still hope.

I think about activities too, because doing different things is supposed to stimulate and be helpful, but it takes time and effort, and frankly I am dragging now. I may have to give something up, but I don't know where there is room to let something go.

But the thing I am thinking about now is that it takes away a confidante. Thinking about this loneliness thing, I have online contacts who care about me, and friends who enjoy my company, but the contact is limited. They all have their own lives, and that's exactly the way it should be. In my family I am really an oddball. The person who would be most on my side is my mother, but she will not remember what I tell her.

Or she will remember that something is wrong, and it will worry her and be worse for being undefined. And if I tell her about the things that her condition makes hard for me, her being a problem will be something that will sink in, even if not how it happens. I don't know why it works that way, it just does.

This is also fair. If my friend's cancer makes me sad, it is absolutely not the friend, or the friend's family, who should be comforting me, because they are dealing with it worse. You look for support outward. I don't know where to look.

And I know a lot of people who have it worse, as well as knowing that it's not a pain contest. This is just where my pain lies. Working at home is best for this situation, but it isolates me. It is no one else's job to take care of me. If I need emotional support I will have to reach out for it, but there's been enough rejection and enough exhaustion that it's not going to happen. Even if I imagine someone calling me and wanting to go out, right now I feel like I don't have the energy.

And I am taking on planning a new large social gathering, which pretty much makes me insane, but I had a dream and felt it was necessary, so I am doing it. It is easy to get me to take on responsibilities. If I can view making myself happy as a responsibility, it may pay off.