Blog archive May 2025
06.05.25 / 02 / retrospective blogging again
Now that I can talk about it, I've added blog entries for the first months of this year in the archive, often from notes I made at the time. I haven't revisited last year, at least not yet.
One discovery is that my mother kept diaries from the 80s until 2019. Not novel-type diaries, but plenty of information about significant events and how she felt. It's good to write it all down for future reading.
06.05.25 / 01 / aphasia
My mother had increasing aphasia last year. Using odd words, not making sense. Saying entirely the wrong thing, because she can't find the right thing. Difficulty parsing written notes, three words at a time as if reading a foreign language. ‘Code break’ phrases that trip her line of thought into a repeating loop. Gesturing instead of speaking, especially in the evening. Lost words for objects, birds, plants, things she has known all her life. This combined with her severe deafness and lack of understanding could result in surreal exchanges:
Mum: What is the name of the plant?
Me: Cotoneaster
Mum: (laughs) What, like the name of a dog?
Mum: Do you have a car?
Me: No
Mum: That’s hopeful
(pause)
You can put it round your waist when you go to work
The 'code break' thing first manifested a few years ago when we were doing Lasting Power of Attorney forms. Section 9 begins 'I have read this lasting power of attorney (LPA) including section 8'. So she went back and re-read Section 8. And then she started on Section 9, until it said 'I have read this lasting power of attorney (LPA) including section 8', at which she went back and re-read Section 8. After five times I was going crazy, yelling "You've already read Section 8!!!"
That was a long hard day. It took six hours to get the forms signed. The next day she didn't remember agreeing to any of it and wanted to cancel the whole thing, but the neighbour was coming round to witness the documents and she was too embarrassed to stop him. I couldn't have safeguarded her without the powers of attorney. Do them before you get dementia.
05.05.25 / 01 / bereavement
A death from Alzheimers is not a sudden blow. You suffer bereavement many times by degrees as you lose things.
- When you have to take over your mother’s affairs behind her back, and lie to her every day.
- When you realise you don’t have a mother to talk to about what you are going through, and you’re the parent now.
- When you sit alone in her house, knowing she will never return to it.
- When they tell you she has only a few months to live, but can’t say exactly.
- When she no longer really interacts with you.
- When you get the call at 5:19am to say that she has died.
- When you see her body for the last time and say goodnight.
- When you walk away from the grave for the first time.
So grief comes by degrees also. I haven’t processed any of this, just parked it. The issue is not grief over her actual death, at least not now. It's the bottled-up punishment of over two years of difficult caring, especially the final six months of being an unintentional full time carer.
The whirlwind of arrangements that follow the death and never let up for a month or two distract from the pain. You don’t have time or energy to feel it, dwell on it or process it. Most of what goes on isn’t the sort of thing that triggers grief, not even the stuff about coffins and bodies. That’s all terribly practical or material for black humour. The real triggers are unexpected memories, or absences, which can be in themselves trivial.
As it turned out, part of the business of the funeral was to retrieve the memory of my mother as she was in life, and overcome or set aside the memory of what she became in the last years and months, the broken and distorted pieces.
02.05.25 / 01 / my mother
The unmentioned reality behind the blog after the pandemic was my mother’s declining health, and my increasing care responsibilities for her. I kept quiet about it because I didn’t want to expose her vulnerability. I mentioned it in 2023 after a three month stretch as her full-time carer, but the term Alzheimers was avoided, although those who have dealt with the condition will have understood what was happening.
After that period she was able to manage her life at home again, with daily care visits and long weekends from me twice a month. But her mobility deteriorated last summer, and I had to go and live with her again from August. The intention was to get medical diagnosis and treatment, make new care arrangements to suit, and step away. I thought it would take a month, but it took until December to get workable medication, and then I couldn’t get care support to cover it. So I gave up till after Christmas.
Suddenly one day in early January she was in such pain that I had her admitted to hospital. And then it all collapsed like a house of cards, both mentally and physically. I thought she’d be home in a few days, but after a week it was clear she needed too much care to ever come home again.
The NHS/social services process was to put her into a temporary care home for assessment, after which we would need to find a longer term solution. But then a doctor said, why are we bothering, she only has two or three months to live. Which was kind of shocking as no-one medical had expressed an opinion on life expectancy before. Trouble is, with Alzheimers no-one really knows how long, it could be one or ten months, so we had to carry on with the plans. And then she died in March, only six weeks after the prediction.
Then all the admin kicked in, masses of stuff. Arrange the funeral, tell the wider family and people she knew, register the death, deal with government agencies, bank, utilities, get the will, talk to solicitors, etc. I’m the executor and next of kin so the arrows point at me.
The funeral was a wonderful day, everything went perfectly and the weather was glorious. I had a bit of a break over Easter. It was my first entire week at home since last July. I just enjoyed the quiet and not communicating much, to give my overburdened head a rest. At some point I have to figure out how to resurrect my own life.
