The penultimate dementia diary.

I expect you’ve guessed from the title.  I couldn’t blog it any sooner until I had made sure all friends and relatives had been informed of my mother’s death, a fortnight ago.

She actually died of a chest infection and hasn’t been cremated yet because the virus is everywhere; if you’re wanting a funeral in a rush in the UK at present, it won’t happen.

As I last wrote, it looked as if she was on the mend but she quite suddenly worsened.  They sent for the doctor, she stood up out of bed and then literally dropped dead on the spot and five minutes later I rang.  So it was all a bit of a shock.  It was, however, exactly the way she wanted to go, no ambulances, no paramedics, no machinery, no pain, no struggle.  Just one minute there and the next minute not there.

Because she died on a Friday, events became time critical.  In order for her to make a successful brain donation she had to be at the receiving university within a certain number of days; there was an intervening weekend on which nothing can happen, and because there was a DOLS order against her there had to be a coroner’s inquest.  Also the care home manager had suddenly left that morning and the deputy had taken over.

Fortunately I had everything written down and had given the care home the written procedure and all the phone numbers, which they easily found in my mother’s file.  At my house I followed my own identical list and three hours after the death had spoken to all the professionals involved and had put them all in touch with each other and with all the relevant information.  I had not had the coroner’s office on my list, but they were helpful and professional and told me that an inquest could be a paper investigation rather than a physical post mortem.  That afternoon the coroner emailed me a statement of Truth for me to fill in saying what I knew.  I filled it in and sent it straight back and an hour later he was able to tell me that he had spoken to the doctor who had attended my mother ten days previously and received evidence from him and that the meeting to hold the inquest would take place early in the week.  I rang all interested parties, the bank, the Department of Work and pensions and the Inland Revenue and all pension providers.  By teatime I had stopped all incoming money and then rang the solicitor.

I also rang the undertakers who were on my list, who, aware of the situation speedily received the body and stored it to maximise the chances of the donation happening.   When I originally made enquiries, some years ago, they said that a whole body and brain donation would be usual.  Since then regulations had changed because of the dementia; whilst the brain donation would be even more welcome for dementia research, the body was now classed as a bio hazard.

I will write in the next blog about donating a body after death.  The OH worked as a medical scientist for many years, so I was aware that research situations can be dynamic and severely constrained by health and safety at work considerations – you probably couldn’t plate up a microscope slide while you had a fag on the go at the end of the bench anymore, I expect, though you could in the 1970s.

So my poor dead mother went off to the university and then most of her came all the way back again, assisted by the undertaker, the coroner, and the university and by the time she came back the coroner had finished his deliberations and registered the death himself.

Two weeks later we have cleared my mother’s rooms and have to have all the furniture here until probate.  We met the solicitor after I had spent a week and four days with the dining table covered in papers, so that I was able to hand over everything necessary in chronological order.  The solicitor said I could probably do everything myself and I’m quite sure I could too but I handed it all over very willingly and received a couple of certified copies of the will, one of which I took to the bank the day before yesterday.

All I have to do now is send out photographs to the family, as I did for my father, to provide closure for those who have no funeral to attend.

And then I’m done.  Four and a half years working every day without a break.  When I look in the mirror I look like it, but at last, I can rest.  It’s been hard but I am not ill as I was when my mother-in-law died, I am also not in debt, as I was then, for which I am thankful.

Most of all I know I could not have done more than I have done.  My conscience is clear, if I were an ancient Egyptian my heart would be light as a feather.

I hope you can see that if I can do this you can do it too.  Dementia is spreading like a plague, it seems to be taking hold in every country in the developed world.  Thirty odd years ago when I had cancer people crossed the road to avoid speaking to me because they didn’t know what to say.  Right now people are frightened to speak to people with dementia, they are terrified of the disease and don’t know what to do.

But you do, you’ve read the blog, four and half years of it, you know that if I can care for my difficult, critical and frequently aggressive mother, every day for four and a half years in another town more than an hour away and at the end just be tired, you can contact the person you know with dementia too.  Send a card.  Pop in for five minutes.  Do what my 102 year old aunt did, phone and say you’ve just put the sprouts on to boil and excuse yourself if the conversation takes a tricky turn to go and see to your sprouts.  Send love, send good thoughts.

I have been struck by the number of number of strange communications I’ve had since my mother died, from people who headed for the hills in terror at the beginning.  To a man they are now troubled and upset people.  Please don’t do this to yourself.  If you even just managed to send a birthday card and a Christmas card to the demented person, they would notice and be glad; my mother was.

Because it’s bad enough to have a frightening disease without being isolated too, and who knows, until all the research is in and we know what’s causing it, although I hope it isn’t, it could be me, it could be you.


And rest.

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