This is the second post today, scroll down for a non-dementia posting.
SMIL is not in a good phase. Her downward progress, when you consider that this time last year she was at home, has been rapid.
I had had the best conversation with her for some months just the day before yesterday. Her daughter emails that she notices her mother is brightest just before it all goes wrong and she gets worse. She had been to visit the day before, had taken her mother out for a push round the village and had complaints that there was nothing to do.
The day following this SMIL and I had an almost normal conversation. She remembered she had been sent photographs and said they were good. She told me her daughter had taken her out. I told her about a job interview the S&H had had and she expressed surprise at the possible raise in salary. She said she was well and enjoying the weather and, after further chat, eventually bade me good bye.
I emailed her daughter with an account of the conversation but that evening received a return email, things had gone wrong. SMIL had calmly asked for a phone to contact her daughter. Then she said she was being abducted and that her daughter needed to get the police. In the background the daughter could hear a member of staff asking SMIL to stop kicking her. Then SMIL hung up. Her daughter was, of course, distraught.
Today when I rang, I was told SMIL has taken to the floor. She is either lying or sitting on the floor and refusing to get up, so the staff are making her comfortable on the floor. I sent love.
Neither my mother, nor mother-in-law took to the floor, though my mother had phases of refusing to sit in certain chairs and my mother-in-law would only sit in the middle of the settee, which was inconvenient at a time when we had a limited number of seats. My mother did once fall at home and was unable to work out how to get up. A senior worker was sent for. She had a well-practised routine for retrieving the floored, involving holding hands and mirroring the position of the demented fallen.
I am blogging this to let you know, if you are new to this, that any and all behaviour can be expected. Nothing is unusual if your brain is on the fritz. SMIL’s daughter was wondering if her mother was trying to tell her that she had been wrong to take her from home and that she needed to return.
Reading messages into the utterances of the demented is not a helpful task for relatives. I compared it to standing under a neon fish and chip shop sign that had an electrical mis-connection and attempting to find messages in Morse code in the flashing on and off of the sign. There is no message, the sign is on the blink. It is faulty and not working.
There is no doubt that demented people do better in their own homes for as long as it is possible or practical to keep them there. Familiar surroundings confuse them less. If you had unlimited funds you could just wheel in the private nursing team.
The OH’s aunt ended her days in a facility run by nuns. My father’s cousin-in-law’s solicitors sold two London properties to fund care in a private hospital. My mother-in-law was removed every fortnight to alternate family members until she finally went into an NHS hospital. My mother’s house was re-mortgaged by me to fund private care at home, she then was moved, when the money ran out, to a posh care home in her own little flat. Because of her geographical situation away from family after her son committed suicide, SMIL was moved early into a nursing home.
But all, wherever they were and whatever stage of dementia they were at, exhibited strange behaviour. It did not mean that relatives, friends, or professional carers had done better or worse. It just meant that their brains were not working in the normal way so that normal had little meaning for them. How can you behave normally if you don’t know what normal is?
SMIL’s daughter routinely beats herself up for sins of omission or commission. So did I.
To be tasked with caring for someone who would be classified just a hundred years ago, as insane, is to take on a thankless task. If you are expecting to store up rewards in Heaven, or wherever you are hoping to turn up after life, know that the road to get there will be uncertain of poise and rocky underfoot and that someone will have arranged all the rocks point upwards just as you put your foot down.
But a worse thing in my book, or blog, is to dodge the bullet and leave the task to someone else. Even worse is to supervise or criticise the person taking on this task from a safe distance. This happens much more often than you might believe.
And if you are a long term reader, you know before I write it that the best reason for stepping up is that one day it might be you.
If you are able bodied the best way to avoid it being you, that we know of so far, is to move that able body. All the blood in you goes charging through your brain every seven and a half minutes, taking out the trash, bringing oxygen to the bits that need to grow and live and keeping your brain, where you live, a nice place to be.
Don’t just sit, scrolling through a device, put your device down and leap around shouting that you are sane and wish to continue.
And if anyone gives you a funny look, you can tell them I’m going to do it too now!