Mum’s first week back at home has not been easy for her or me. Before mum came home, I was aware I hadn’t put into place all my pre-homecoming plans. I made progress on lots of things, but didn’t get completely up to date with tax and admin, or pre-cooked all the healthy meals I’d planned. I hadn’t read all the dementia care books I’d bought, or created mum’s meditation and yoga plan, which I was most excited about. And I had hoped to write blog posts about the preparations that I had managed, for example how I:
- created a dementia-friendly home. This involved many trips to charity shops and the tip to clear lots of space, and remove obstacles from rooms, hallways and the staircase.
- produced my own homemade signs to signal key rooms such as toilets, and the contents of drawers and wardrobes (see featured image).
- created a comfortable bird-friendly garden and secure outdoor space that mum could walk out to on her own, and
- attended two dementia care training days (run by the amazing Teepa Snow).
I decided I would have to do some of the remaining things when I got breaks. Yes, ‘breaks’! What was I thinking? When mum has short naps that’s my time for washing, cleaning, preparing food – there really aren’t many actual breaks. Although I was aware that I need carers to give me respite, my last blog post titled Maintaining Routines seems painfully naive now.
Getting reacquainted with mum’s home
The few times I have brought mum to her own home over the last two and a half years, she seemed instantly comfortable. I brought her back several times in the run up to her homecoming, and again she seemed quite at home. What I didn’t appreciate was how confusing a move for someone with dementia would be. I knew that you shouldn’t move someone living with dementia unnecessarily, as it can be very disorientating.
What made things worse was that while mum didn’t recognise the house as somewhere she had lived, she recognised many things in it. This was extremely disconcerting for her. She kept asking questions about whose house it was and why we were staying here. Mostly she thought it was a palace that her family could never have afforded, and at other times she thought it was shabby, tired and in desperate need of updating, depending I guess, where she was in her past at that particular moment. The whole experience of the move has accentuated her knowledge that huge gaps of her past are gone, a void where memories used to be. She eloquently highlighted this when she said, “I don’t know if I’m in the present, the future or the past. It’s all the same.” Mum then asked, “I don’t suppose my parents are still alive?” as she does often. She has spent significant parts of each day distraught.
On Monday, when we returned from Singing for the Brain, she absolutely knew this was her old home. It set off a desperate series of questions that she urgently needed answers to. As I struggled to find reassuring responses, she became more distraught. I asked what she was most worried about, and she explained it was about being on her own and having to make decisions. Although visibly relieved by my reassurances, they came too late. Mum remained completely miserable the rest of the afternoon. Several times I had to leave the room, as my compassion was running thin, and I was just making things worse. A walk by the beach, and a drink in the sun at the local pub, failed to raise her spirits. She had taken umbrage, though she had no idea what about.
The move seems to have unsettled her more than I anticipated, and has heightened her awareness of her condition.
Mum is very unsteady on her feet during the night, so I need to support her to go to the toilet and back to her bed. A sensor alerts me that mum is out of bed. As she had a very bad fall in the care home, I’ve been jumping out of bed in a panic to get to her before she stumbles. This week mum has been up between four and five times most nights. She goes back to sleep instantly thanks to her sleeping tablets, but I don’t. Having triggered my fight or flight mechanism that kept my ancestors alive, I have found it difficult to get back to sleep. So, I have been – and am – very tired indeed.
Support for mum and me
I had failed to find private carers but was optimistic that mum’s support from social services would give me some respite, as I described in my last post.
Unfortunately, the social services carer visits are not particularly useful to mum or me, so I have cancelled all but the morning call. The lovely carers arrive to help with specific tasks like supporting her to get washed and ready for the day and prompting medication. Sounds great, but mum starts getting herself ready the moment she gets up at 6am, only to have someone turn up at 8.30am to encourage her to start again (this time though with a proper wash). They arrive a couple of times in the day, and again in the evening to help her get ready for bed at 7pm! Apart from the morning call, these visits were just agitating mum.
Fortunately, I managed to get a private carer in three nights a week, so I can get to my badminton two nights, and have three hours on Saturday night to do whatever I like. Last Saturday, I wanted to lay low in the house and just rest, but mum wouldn’t leave me alone. So, I decided to cycle to a local Indian restaurant where I would eat and read. It was a nice cycle ride, but after waiting half an hour the manager told me it would be at least another hour before there would be a table for me. I cycled home and had mum’s dinner, which she hadn’t wanted, with a glass of wine. Mum started clearing up around me and went to remove the wine. I told her wearily I wasn’t finished with it, and she told me not to drink too much. I reminded her of my age, and she reminded me it was her home!
My priority now is to get additional support for me, so I can maintain more of the routines that nurture me: my sleep, meditation practice and yoga! Delighted that I have three nights off, but I will need much more than that, if this is to work.