None of them good.
There is no getting past it. The later stages of dementia are distressing for onlookers and very distressing for family members. There have been some upsetting incidents with the phone. I was so happy that my mother could have her own phone and her own phone number. In her life she has spent hours of every day on the phone chatting to friends; she loves to talk and is one of nature’s natural filibusters. Since the death of my father I have either been with her each day or talked to her on the phone every day at least once. Sometimes if she is agitated I have been able to soothe her and because I know her life, able to remind her of happier times, where she lives more readily than the present.
However on many occasions recently I have not been able to ring her because the home have had to unplug her phone. I did say at the start of her living there that it might be a good idea to unplug her phone in the evening because she was prone to making very odd calls late at night. At home she had a phone by her bed which enabled her to get me out of bed on several occasions to be sworn at or shouted at or whatever and I was always worried that if she did that to her sister-in-law or her sister, both of advanced age, that the shock might kill them. When she used her phone in the home to call the police late at night, three nights in one week, they finally believed me and started disconnecting the phone. This was fine but they often were too busy to remember to plug it back in in the morning, so I had to make three calls, one unsuccessful call to her, one to the office to ask if she were plugged in and one back to her when she was plugged in.
The call to the office today produced sad news. She is sitting by the front door, having struck it and several passers-by with her stick, though at the time I actually called, she has fallen asleep on the chair by the door. The care team asked me if they can notify the council, by filling in a form, that she may no longer be allowed out because they think she represents a danger to people outside.
Of course I agreed, I lived with her for a year and have been struck by her stick, it jolly well hurts and could break bones in a child or someone old.
When she first had the diagnosis, I printed a lot of explanatory pictures about stroke and the brain and we discussed the disease and the possible progression of it. She got me to promise that I wouldn’t let her hurt anyone.
So that’s what I’m doing.
In my mother’s case anticipated worse-case scenarios have happened all along the line, from the thousand times she told me to kill the cat till the day I had to do that, to now when I feared for four years she would be locked up and they have had to do that.
There are no locked doors in the home she is in. There are four homes in the group. Some of them have locked doors. Residents can be moved if it becomes impossible to care for them in an open home with people who are not demented.
Although my father was happy to stand behind her for the last three years of his life making whirly signs beside his head, he would not really get to grips with her disease and probably never realised he was enabling it. Nevertheless I am heartily glad he is not here now.
Giving permission for your relative to be kept indoors, albeit in a suite of rooms filled with antique furniture and all their own things, is very sad.
I am. Very sad.
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Hoping for happier times.