I’m depressed because I’m having difficulty divorcing my emotional response from my mother’s condition.
I know from the responses of people I know, such as a relative by marriage who is having to take a Vallium to get her into the care home to visit her mother, that this is a common problem that has nothing to do with the previous character and disposition of the demented person. Her mother was great and great fun. She was very active, mentally alert and had been a widow, not just coping on her own but living a full and busy life, for the majority of the time I knew her. In her case it was anaesthesia going wrong in a routine operation that has sparked her dementia. Despite her life and demeanour she is now mainly raving and just occasionally herself.
My mother in law, a gentle soul, exhibited little aggression but was often either tearful or totally bewildered and lost. My cousin’s husband in the later stages of Parkinsonian Dementia was reportedly often unable to understand what was going on and increasingly in his own world.
From my own experience, which the dementia diaries have been from the start, I would say that, however it evinces itself, whether in mental absences, emotional outbursts or straight up aggression, the later stages of dementia seem to bring extreme emotional over reactions to slight stimuli and that these emotional outbursts are very distressing to relatives. All my relatives who told me about these emotional episodes were clearly very upset by them.
Take me for instance. This morning on the telephone I endured a three quarters of an hour rant about assorted people. One of the young carers, who is engaged, and was previously my mother’s favourite, is now very pregnant. My mother is incandescent with indignation. In some ways this is a good thing, it keeps her interested and involved in what is going on on the periphery of her life without the need to do anything about it. Today, however, she was incredibly aggressive about the poor carer, who, reportedly does nothing but sit and play with her phone and doesn’t speak much. If my mother is shouting at her as much as she is shouting at me, I’m hardly surprised. Then we had half an hour of who does she think runs this house and why did I go quiet when she asked me that last Wednesday? Who does she think is responsible for getting all the food into the fridge? Dear God she has to eat you know. Then we had a sudden change of tack on to another carer who has moved out of her family home and in with her boyfriend and didn’t turn up for work. There was a good ten minutes of how the poor creature had probably been getting desperate as she was 28 and unmarried but how reckless it was to move in with her boyfriend. She’ll never get a dowry now you know. So we lived in the stone ages briefly before snapping back into the present and the extreme difficulties of housekeeping from an armchair whilst enduring a change of shift every seven hours.
As usual I just stood and absorbed it all, though I got shouted at for silence, because the answer to the oft screamed question ‘Who do you think runs this house, it’s very difficult when you can’t breathe, let me tell you!’ Is ‘I do.’ It’s irrational that I should feel so depressed because I can’t answer in my own defence or with the truth. I manage to not hang up by remembering the photographs of brains that I have seen on the Internet. I realise that the anger neurons are firing up and the logic connections are entirely absent. It is nevertheless hard not to respond to a person who has been so prominent in my life.
And here is the answer and the problem. The reason that relatives of dementia sufferers are so adversely affected by what are essentially the ravings of the demented is that their own brains have, over many years of experience of interacting with the person, prior to the onset of the disease, developed the shortcut responses that enable normal social interchange. To cope effectively with the disease you have to disable the responses you have evolved over a lifetime. This is the problem. The person to whose aberrant behaviour you are reacting, is still your parent, your spouse, your relative. The whole of your experience dictates you interact with them in familiar ways, when the neurons in their heads, that are half the interchange, are no longer there.
This is why the professional help you seek at the outset is so important and why the work building communication and trust between the caregiver and the relatives is of great importance early on. Without it I should be demanding the dismissal of at least two of the carers, if I believed my mother. With it, and admittedly, because I have spent so long with my mother alone, in the first year when I lived with her and with the carers subsequently, I can see what a wonderful job they are doing. This is why you need professionals and cannot go it alone. The carers have the supreme advantage of being emotionally uninvolved with the demented person. They can deal with all emotional outbursts calmly and by so doing best help the sufferer.
I still feel as if I have started the day being thoroughly told off for something I didn’t do. Mainly because, on one level, that’s what happened. At another level I realise that such outbursts are happening more frequently and the ability of care, hydration and medication to slow down the progression of the disease, is probably coming to an end.
Either way I feel depressed. I’m going to have a work out to get my own endorphins circulating.
Then I shall be china painting all afternoon. I am thrilled to say I have fired and glazed a whole new range of 24th scale porcelain ornaments for Miniatura.. I might not manage the dolls but the ornaments will be there. In the midst of all the madness I’m hanging on to my ability to produce statues half the size of your little fingernail that will last for hundreds of years.
It’s a moveable feast, sanity.
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JaneLaverick.com – hanging on in there, just.