I haven’t written the Dementia Diaries for some time, not because my Step-Mum-in-Law has suddenly got better but because everything to do with this is so depressing. If you are a carer for someone with any one of this range of diseases, I am still here and still coping, still with usually daily contact with the demented person, fifth family member into learning about this disease.
Christmas magnified everything. Regardless of any religious or commercial considerations, Christmas in the modern age is about family, or those closest to you who you regard as family. If something major has affected your family it will affect Christmas. If you have lost a family member or close friend, any form of jollification will not feel like something you wish to participate in.
Because of Covid there was no possibility of SMIL spending Christmas with her daughter, who has moved SMIL to a care home in the village next to where she lives. I think for quite a while the daughter was hoping that she would get her mother back into her house as she had for so many Christmases, and turn back the clock. But since the previous, separated Covid Christmas of 2020, SMIL’s son had committed suicide and the daughter’s Father-in-law had died.
When things go spectacularly and thoroughly wrong people do tend to plough on as if nothing had happened. The S&H and his bride had their wedding the day after the bride’s father had died, in a state of stunned denial. If you are the Titanic, it might be very classy for the band to play on as we all sink beneath the waves, though it is helpful in that case to recall that there were not enough lifeboats. In the daily life of most of us if there is a disaster it is possibly wise to stop and take things in, if we are not in imminent danger.
One of the benefits of dementia, if there can be said to be any, is that, unless the sufferer is running around hitting people with a stick, which can happen, there is plenty of time to take stock and do a bit of thinking. If you are the principle carer there will be no shortage of meetings with various authorities. The more help you seek, either paid for, or from government or other sources, the more meetings there will be. The usual course of the disease can be about five years from diagnosis to death, though this is dependant very much on strength, age, previous health and any other of a number of individual conditions. I reckon my mother had dementia for about seven years. She was physically very strong and a fighter anyway. She had developed resilience by having a father with drinking problems and a huge and difficult personality, not unlike her own. She actually died of norovirus, which ripped through her care home in January 2017.
My father’s cousin’s wife, an elderly, childless University professor, had a lot of care and help and was ill for about six years. The OH’s aunt, mostly cared for by her daughter, had it for only about three or four years after formal diagnosis. My mother-in-law, who was diagnosed with Alzheimer’s in her fifties had barely five years. SMIL, who was only diagnosed last summer, after a few tests at approximately six monthly intervals, when her memory worsened, and was therefore diagnosed very promptly, has deteriorated faster than anyone I’ve known.
If you are a new carer, you can see that although it is impossible to predict the duration of the disease with any accuracy, which would be helpful if you are the person trying to make financial provisions, there is a range of survival time after diagnosis. Whatever you plan has to take that into account. I was fortunate in being able, when the money ran out that cared for my mother in her own home, to find a (very posh) charity home with a policy of keeping long term residents free of charge if the money disappeared. This was a great comfort to me, even before I developed cancer, because I had kept my mother in her own home town, where she wanted to be, but it necessitated a lot of commuting on crowded roads for us. Road accidents happen even to good people on errands of mercy. In my mother’s care home there were a couple of residents who had outlived their families and money. In the pandemic I think this is more likely to happen. In the pandemic putting off the research into local care homes, though made much more difficult by the circumstances, is not really an option. If your ship goes down the band will only play on for your elderly relative if you have hired them first.
SMIL seems to be set on a course of developing one infection after another. In the elderly, Urinary Tract Infections can lead to confusion and, in advanced dementia, aggression. It is unfortunate to say the least that just when we are becoming frail we will be constantly assailed by infections but of course, the frailty is exacerbating the inability to fight infection. After a terrible year and a move to a strange place when newly demented, poor SMIL’s immune system seems to have gone off somewhere else for a holiday.
We had had a pleasant conversation midweek after SMIL received the zig zag book of the grandchildren’s Christmas that I made for her. By the following day all she could do was shout that she was being locked up, and then hit the carer with the phone. The speed at which infection takes hold is impressive, the effect on unsuspecting bystanders is demoralising. I was so upset by the things SMIL shouted that it took me the rest of the day to recover sufficiently to do anything. SMIL’s daughter emailed to describe the situation, of which I had become aware and to say the care home suggested not ringing for a couple of days as phone calls are not beneficial to SMIL when she is unwell.
Friends and family of the demented person need to remind themselves constantly that the behaviour of the person is just that. Behaviour. It is not them, lost somewhere inside a disintegrating brain but the effects of the disintegration on their interactions with the outside world. Behaviour is one of the more useful words I gleaned from those who cared for my mother in her own home. They would watch her doing whatever strange thing she was doing and tell each other it was ‘behaviour’, or when passing the book of notes to the next in shift, they would write ‘behaviour’ on the notes. I found this a helpful way to think of what was happening. Classifying the demented person’s shouting at you as ‘behaviour’ aligns it with the disease and not with the person. The behaviour is a symptom of the disease and a proof, you probably didn’t need, that the person is very sick indeed.
Remembering this enables me to give myself the time to recover from the effects of a verbal attack. It enables me to separate what the person is doing from the underlying person who is still in there, somewhere, and remembering that makes it easy to phone again and make the new phone call bright and positive and of comfort and help to the sufferer.