It is very difficult to watch my Mom go deeper and deeper into dementia – frustrating, irritating, sad, upsetting, maddening all rolled into one. I think I have finally accepted that she very seldom knows who I am, though I am someone familiar to her. Tonight was “one of those afternoons into evening” – several times I wanted to shout at her to give it a rest, yet I know she is not doing it on purpose. We go through the 50 questions, mostly on the same subject until I could scream. But she just couldn’t hold on to the answer – I can’t imagine how that feels to her. She keeps saying she is stupid because she can’t say what she wants to say – what she is thinking can get to her mouth to express it because there are short circuits and blocks on the pathway from her brain to her mouth She definitely isn’t a stupid woman; on the contrary, she is very intelligent and perceptive but her circuits don’t allow her to talk the way she wants. She keeps asking why she can’t say what she wants to say – would she understand if I told her? Quite often now she seems to mumble things that don’t make sense, still working on a good response for that.
She constantly asks “Are you all right?” – it is not just since I broke my hip, it has been like that since we moved here 10 years ago. She will ask many times a day, but now I understand that telling her I am fine, I am getting better every day is the better answer than “Will you stop asking me that every five minutes!”. Since we have caregivers every day, now it is constant asking asking asking who is coming. I tell her no one is coming tonight, Kathy will be here tomorrow at 9 and your ladies will be here at noon. That is for Mondays. She has lately been asking me where my sister who was here is now, or about the man in the other room, or the other people in the house.
She keeps standing in the doorway as I am ready to go out of the room – believe me, I watch where I am stepping because I fell and broke my hip by not watching where I was stepping. She thinks everything has to do with her, if I am on the phone she keeps coming in to listen so I have to tell her it is my phone call. Tonight I was talking to my younger sister and she must have come in at least 4 or 5 times. It didn’t seem to matter she spoke with her first, chances are Mom didn’t remember. Then as we were watching tv in our room, Mom must have come in at least 9 or 10 times about who’s coming, am I all right? and some she mumbled things we didn’t really understand. I invited her twice to join us but she wouldn’t – maybe she was restless or bored.
She doesn’t want to be here, she misses my Dad and their cat Josephine. My sisters and I have reassured her they are waiting for her – she keeps asking how can she get there. She misses Dad so much and doesn’t like the life she has right now. As Kathy put it, she has a life here she can’t live any more. Sometimes she will talk about slitting her throat or ask me how can she kill herself, but I don’t think she would do that, no matter how desperate she gets. She wants to leave this world and be with Dad and Josie but she is scared – my opinion is she is scared it isn’t true, that they are there waiting for her. I talked with my friend Monty to ask if he had any insight – he told me they are preparing a place for her and that there will be guides to help her through because she will be confused. I told Mom about it and her question was “Are you lying?”. I said I wasn’t lying at all – she wants to believe it but she isn’t quite ready to allow herself to believe. I want to fix it and make it all better, but I know I can’t. It hurts to see her this way but I also know she has to work through it herself.
She keeps asking to go home, yet she doesn’t know where home is or how to describe it. She keeps asking how she can get out of here – yet once in a while she wants to know if she can spend the night. She thinks she has only been here for a short time – could it be a result of three weeks away while the bathroom was redone?
I am working on finding her a place to live because she is now at the point she needs more care than we can give her. It seems to be taking a long time to put things together – people on holiday, not receiving faxes, etc. I keep telling myself there is a reason it is working out this way, I just don’t know the reason. It may be clearer in time, right now I need to get the appointment set for the assessment to see if she qualifies for the program. We’ll see what happens after that. I will admit that both Eddie and I are getting to the very end our rope, we have no privacy, no home of our own and not much of a home life.
Gift of RA 