Back in the groove.

Here I am, it’s Sunday morning, I mostly comprehend the new laptop and Windows 11, which I think I’ve got, of which more later, and it’s time to fire up the old tripewriter and catch up with you.  How have you been?

I’m sure you remember the postings about my Step-Mum-In-Law, referred to here as SMIL, whose life changed very drastically, as a result of the pandemic and who is now my fifth family member with dementia.  The situation forms quite a piece of my every day and, accordingly, I have revisited the Dementia Diaries, which I began to write when I became carer for my mother in 2012 and realised how little help there was anywhere for those close to a demented person at the time of your life when you most need a bit of guidance to ignore.

A year ago SMIL was living in her own home.  Her daughter had arranged for the local council to send in carers several times a day and had installed a remote speaking device and a camera.  Previously in the pandemic this had been unnecessary because SMIL’s son lived a few streets away, was only at work a few days a week and could do the shopping and pop in for visits.  Every Saturday he and his daughter arrived at SMIL’s house with fish and chips and, despite the pandemic there was a happy evening and something to look forward to every week.  I had been phoning SMIL every day since the beginning of lockdown.  I knew lockdown meant a vast change for SMIL.  After my father-in-law died she carefully constructed a life for herself that meant she had something to do and a reason to leave the house every day.  A sociable person, she enjoyed bowls, a lunch club, church and various other groups and societies.  Her daughter did visit when she could, although she lived an hour and a half away and had three teenage children.

I rang every day; we chatted for an hour.  Sometimes when I rang SMIL’s son was there and I chatted to him too.  Then he committed suicide, which, it became apparent, he had been planning for months.  He rang my son, who he had never spoken to before, at Christmas, to check his phone number.  When he died he left his daughter, a student, his mother, for whom he was unofficial carer and his sister, in remission from breast cancer,  upon whose shoulders everything fell.

SMIL’s daughter then contacted the council.  The responsibility for the care of people with compromised mental health varies very considerably round the world, as the first series of Dementia Diaries made apparent.  I received emails from many countries.  Although arrangements differed widely, what became more obvious with each email is that the more agencies are involved in the care of a person, the more opinions there will be as to what is the correct procedure.  Chiselled into a wall at the forum in ancient Rome was the remark: Talis homine, taila opinionem.  So many men, so many opinions.

So true.

With many official visitors to the house, opinions as to the competence of SMIL to live in her own home, even with carers visiting, were various.  A senior official, visiting on a bad day for SMIL, who had just had a diagnosis of dementia and a son who had committed suicide a few weeks previously, opined that she should be in residential care and promised rapid transition to a care home, anywhere there was a place.  Understandably SMIL’s daughter, who had been surveying residential facilities near to her house, acted quickly and moved SMIL to a care home in the next village to her.

For the first fortnight SMIL was happy, chatty and having a holiday.  The she said she had had enough, she wanted to go home.  Now she is saying that she will forgive her daughter just as long as she can go home.  Needless to say daughter plans to clear her mother’s house and sell it, which she has to do to meet her portion of the costs of the fees for the residential home.

SMIL has not said much because over the last few weeks she has lost the power of speech.  Now when I ring each day, the carer in the home puts the phone on speaker and I talk cheerfully about family matters for ten to fifteen minutes, send love and sign off.

This time last year we were having chats lasting up to an hour.

What to conclude from all of this if you are a carer, or likely to be cared for?

Talk while you can.

One of the most helpful things I did with my mother after my father died was to have long discussions.  We talked about what she wanted and what I could practically speaking, achieve for her.  When we reached agreement about a detail I wrote it down.  I had a loose leaf file which included information about her illness, pictures of brain scans, contact details for family, doctors and so on.  All the information you carry around in your head, which will be lost if the working of your brain is compromised.

I keep a file here of salient facts such as where I bank, the name of my doctor, plumber, lift engineer and so on.  Each time I have to look up a fact I add it to the list.  It is for the S&H and it is because it took me a solid month when my father died to find out all these facts about my mother and this at a time when I had no time to grieve and was so busy with all the practicalities.

If you were suddenly struck dumb, what would you like to tell your children?  Or your friends?  Whoever it is will look after you?  Tell them now and write it down.

The OH says I spoil the grandchildren, always buying them things.  Their mother remarked when we visited that I bought them most of their clothing.  I do.  When they came last week I took the children out for shoes and they had a pair of shoes, a pair of sandals and a pair of slippers each, they were sparkly, they lit up when you stamped, they were great.  They loved them and I loved being able to buy them.  I’m not rich, it’s my state pension that provides the money because while the OH is alive we have a good occupational pension from his work.  I am so lucky.  We have paid off the mortgage, we can put on a cardigan and turn the heating down, we are old and don’t need to eat much, we are alive.  So I enjoy buying things for the grandchildren because, now, I can.

I look at the news, as we all do, and see how life can change in the blink of an eye.  If you are the carer for a demented person you already know this.  Don’t wait until bits begin to drop off.  Make your desires known while you are ept and ert.  As a person who has had cancer twice I know how very rapidly you can become inept and inert.  The transition to struck dumb, grasping your knees, rocking and not knowing what you want, except ‘make it all go away’ can be a heartbeat.

At the very least, while you are lucid and vocal tell the people you love that you love them, tell them you know they will do the best for you that they can, if the need arises.

Don’t let them suffer as SMIL’s daughter is suffering, because  a person whose brain is not working told her she might be forgiven for moving her mother to a care home, which she had to do to save her.


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