Once again I am having some difficult telephone chats with a demented family member. It’s my step-mum-in-law. Cared for at home, a couple of hours car journey from her surviving child, her daughter, she went down hill so rapidly under the effects of constant back pain, that the care authorities were suggesting to her daughter that she needed to be in a facility, where they could keep an eye on her and were going to do so within the next twenty-four hours, whereupon her daughter got in a car and moved her mother to the nice care home in the next village to her own home, at speed.
I have talked to SMIL most days by telephone. Not every day, as sometimes whoever answered the phone said she wasn’t well enough to chat. Her daughter has been going to visit, mainly to collect complaints from her mother and be told how bad she is and now the daughter’s husband has tested positive for Covid, so she can’t go in anyway.
Needless to say the daughter is beating herself up at every opportunity.
How you view the world and your place in it, is an individual view dependent on many factors, such as genetically inherited personality and the life circumstances acting upon that base. Like flower bulbs planted under concrete, some of us still twist this way and that to get to the light.
I have known a number of doctors, nurses and care workers, trying to cure a loved one by proxy. I know a policeman who would dearly have loved to arrest his errant brother. I have an aunt who, as a magistrate, sent her unloving mother to jail repeatedly.
You cannot control what another person is doing or is going to do. You can and should, to a certain extent with your children but can’t absolutely; the first time you cannot stop a baby crying is exceptionally educational. Child psychology informs us that at the age of two or three, as children are more able to physically affect their environment as their motor skills improve, they begin to evolve magical thinking. Dress up a five year old and give them a magic wand and see how happy they become.
In the matter of dementia and other conditions that affect the working of the brain, we find ourselves powerless to even reach or interact with the affected person. If their brain is not working they are not susceptible to reason. It does not matter whether the condition affecting the brain is amyloid plaques in Alzheimer’s, alcohol withdrawal, or drug saturation, normal exchanges are no longer possible. Not only can we not control the person, we can’t even help them, and sometimes are unintelligible to them.
The last conversation I had with SMIL, she complained that her bedroom was not her bedroom at home, demanded to know where she was, and in various other utterances was challenging and aggressive. Eventually she hung up on me.
I have found under these circumstances, a phrase I read in a booklet for relatives of demented people to be helpful. It said that the demented person was unable to enter your world, so you have to enter their world. If they say they are the Queen of Sheba, you enquire how many elephants her majesty would like today.
In practical everyday terms I have found demented people, but not those suffering from drug abuse or withdrawal, to be reachable through tone of voice. Soothing, calming and reassuring is the ideal tone to adopt, even if you are being sworn at. In their minds all the sufferer can detect is a threat and they react with aggression. If you can find a way to remove the threat verbally, or to be obviously not part of the threat, this can help. I remind the SMIL that in her own home she was occasionally looked after by her neighbour who could not be there all day. SMIL is not well today and needs round the clock care which she is getting. She is surrounded by nurses who can attend her immediately, unlike home where the neighbour couldn’t get hold of the doctor at all. And so on. All positive, all reassuring, all related to the physical immediacy of SMIL.
I have found dementia patients to be easily overwhelmed with fear, especially in the presence of pain. It is almost as if the brain is magnifying the threat so that the compromised sufferer will take notice and act.
I understand being consumed by fear. I was fearful in cancer, especially if I was tired. It is not such a jump to realise if I had been removed from familiar surroundings, was in pain, bereaved and had had a diagnosis of a disease affecting my brain, inside which I live, that I too would be frightened and lost. It would be almost unreasonable to be reasonable.
Whether caring for someone directly or indirectly, in your general dealings with other people, sane or insane, I believe the greatest help to yourself and others is to be kind. I think it is one of the greatest virtues. It is, under duress, tricky to hold on to. It is hard to espouse when you yourself are tired, in pain or fear. The assistance to the necessary attitude is life itself. Anything can happen to anyone and often does. Being the sympathetic ear, the generous comment, the gentle understanding gets easier with practice. My grandmother practised these virtues all of her life and eventually excelled at them all. My mother took the reverse view and was always fighting life. Towards the end of her life my grandmother was never short of help or company; she was a nice person to be with. Towards the end of my mother’s life there was really just me.
Anything could happen to you or me. If it’s already happened to someone you know, being kind is a good idea if you’re the one with the working brain.