My 89-year-old mum is starting a week's trial at a care home this week.
She was first diagnosed with early-stage dementia at the end of 2020, and for the past 2.5 years she has managed with a live-in carer, but her dementia has progressed to the point where she panics when the carer takes her 3-hour break every afternoon, and she is often awake and wandering around the house several times a night. So she now needs 24-hour care, which fortunately has coincided with her actively wanting to go into a care home.
Before she got dementia she had always said 'over my dead body' about going into a care home, but now she is bored and lonely – my brother and I see her several times a week, she goes to a couple of weekly groups, and has a friend who visits most weeks, but there are an awful lot of hours between all those things, and she can't really focus on reading, or knitting, or tinkering on the piano, or any of the things she used to do while away the time. So in theory, a move to a care home should be great – she thinks she wants to go, and both her sisters are in care homes, where she has visited them and expressed interest in something similar for herself.
The trouble is, one of her worst dementia symptoms is aphasia, meaning she finds it really hard to express herself, to find the words for what she wants to say or what she is thinking, needing or worrying about. Often she can't answer even a simple question – not because she doesn't know the answer, but because the words can't travel from her brain to her mouth. Although there are other times when she just doesn't get the question, either. Conversations with people who know her very well are easier because we can make educated guesses about what she wants to say, but I'm so worried that in a place full of strangers, no one will know what she wants, and how can she meet and communicate with new people, get to know them or make friends, if they can't understand her? This is dawning on her too, and she phoned me in floods of tears today with this worry – at least I think this is what she was trying to tell me, as unfortunately when she is anxious and upset, it's even harder for her to express herself.
The trouble is, I desperately want her to settle in the home because at the moment, it's her choice to move there. If she doesn't want to stay, we're looking at three different sets of carers at home instead of one single person, and probably a move to a care home within a year or two anyway. But the thought of leaving her there, potentially frightened and upset, kills me. It reminds me of trying to settle my children into nursery when they were tiny, which was hard enough, but this feels even worse somehow.
I realise she hasn't moved in yet, so it might – miraculously – go really well, and perhaps I'm doom-mongering unnecessarily. I feel like I should visit every day, but have read that this isn't a good idea as it would make it harder for her to settle. But the thought of not visiting her for a few days feels horrible, and I worry that she'll think she's been abandoned. I can always speak to her on the phone, of course, but if don't then come and see her, will she feel I don't care? I want to do what's best for her in the long run, but part of me doesn't want to try this at all as she gets upset so easily these days, and seeing your elderly mother crying like a little child when she used to be a woman who charged through life boldly and brightly, slaying dragons and looking after everyone else, is just heartbreaking.
Sorry this is so long – I didn't intend for it to be at all. I think I just mainly need advice about how to approach this trial week. How much to visit, how much to be involved, what she should take with her to help her feel better and to try and settle, etc. What to do if she totally freaks out – bring her home or try and persuade her to ride it out?