For new readers, these are the dementia diaries in which I document the occurrences I encounter when involved with family members, or friends with dementia. I am now up to my fifth such family member. The first was my new mother-in-law who was diagnosed at the end of the 1970s, the latest is my step-mother-in-law, who I usually refer to as SMIL.
Throughout the pandemic SMIL had her son, who lived near to her in the same town, popping in and doing the shopping. He committed suicide, so his sister, who lived several counties away, took over, getting helpers from Social Services provided by the local council to go in every day, once her mother had been diagnosed with Alzheimer’s disease as lockdown was ending. Just over a year ago, a senior member of the care team encountered SMIL on a bad day and threatened her daughter that they were going to put SMIL in the first care home available. The daughter, who had been surveying care homes near her, acted quickly, moving her mother to a care home in the next village to her.
If you read literature which is available about dementia, which I did obsessively when my mother was first diagnosed, nearly all sources are of the opinion that the more familiar the surroundings, the less demented the behaviour. I had already experienced this with my mother-in-law. Once she was diagnosed, my father-in-law came and stayed with us for one long weekend a fortnight, early Friday to late Monday and the other weekend he took her up to Scotland to stay with her sister. In conversations with him and the sister it became apparent that my mother-in-law was very much more agitated and aggressive up in Scotland than she was with us, in Nottingham. The reason was the building. We lived in a semi-detached three bedroom house, identical to my in-laws’ own home. All the rooms were in the same place, the stairs were on the same side, the kitchen and crucially, toilet, were in the same location. The house in Scotland was utterly different. Different size, different number of rooms, different placement of the garden, different location of the kitchen and bathroom. My mother-in law was lost the minute she got out of the car at her sister’s.
In dementia the brain is challenged, parts of it are not working, or not working well. This can be deduced by bystanders with little effort. At first the short term memory will go on the blink causing sufferers to repeat themselves endlessly as they forget what they have just said. As the disease progresses the normal stimulus/response activities simply do not work. As the sufferer becomes more aware that their utterances are not understood and they cannot think how to correct the problem, they will resort to increasingly less sophisticated forms of social connection all the way down to physical violence and beyond.
The prognosis is variable, depending on the type of dementia, the underlying health and age when first diagnosed. The shortest prognosis would be about five years, the longest about ten. If you look it up you will find the disease is now classified in stages, which it was not when my mother was diagnosed, a decade ago. I don’t know how helpful the classification is: as in bereavement people go through all the stages but not necessarily for the same duration of each phase or in the same order.
But, as with my mother when the re-mortgage ran out to pay for 24 hour care in her own home, causing her to be moved to a care home, or with my mother-in-law at her sister’s, when the sufferer is moved away from familiar surroundings at any stage of the disease, their ability to cope and subsequent behaviour will take a nose dive, instantly, or fairly soon.
I have likened dementia to a faulty neon sign, flashing on and off with a dodgy electrical connection. This is a good analogy, the brain is electrical. Every thought you have ever had is the result of an electrical connection. In dementia, there are road blocks in the brain, normal routes of thought are unavailable, so connections are random, unpredictable and frequently inappropriate.
Imagine what it is to be a sufferer. Imagine yourself to suddenly arrive in a hotel in an unknown location. Everyone is speaking a foreign language which you do not understand, you have a massive headache, you are bursting to go to the loo, you have no idea where it is, you do not know how to ask and any minute you’re about to disgrace yourself in front of strangers who are all making noises at you which you can’t understand. What do you do?
Now imagine all this happened because the person who was usually there for you has died, which you only remember sometimes.
When my father died, there were many visitors. They nearly all promised to visit often. By the last six months two were left. One, my mother’s hairdresser decided she could not bear to visit the care home, the other came briefly, just a couple of times. SMIL had a great social life; the week she was due to move to the care home she had a goodbye party. Of course none of the former friends have visited – the home is many miles away and they are all old.
As familiar faces vanish and the surroundings become strange and unfathomable at the same time as the brain, trying to catch up with all that is happening, diverts blood from the conversational areas to the map reading and toilet finding zones, life takes an unwelcome downward turn. Add, in a home with communal lounges, other demented people, some of whom are having a violent phase, so that the sufferer is now surrounded by aggressive strangers, and the outcome is not going to be peace and light. Not long ago, on the news, there was an item about someone’s family member who had been murdered by another resident in their care home. Suppose you had just seen that on the news, before you, who cannot walk well, and certainly cannot run away, are moved into a care home.
Those of us on the outside of the disease find the repetition a trial or the making no sense, stretching, or visits exhausting. We decide to spare ourselves the trouble, hoping that the one in fourteen current incidence of the disease, won’t be us.
Cancer is one in two, I have had it twice.
So now, deserted by everyone we know, sick and struggling to make sense of it all, ineffective and terrified, how are we to cope if we are the demented person? What future is there for us?
As you know, regular Diaries reader, my recent communications with SMIL have been very difficult. The system to get to her involves ringing the office at the home. Frequently I wait for a response, sometimes there is none. If there is one, the member of staff will search for SMIL and see if she is awake. If she is, I wait five minutes and ring the home mobile number and they will take the phone to SMIL. If she is asleep or running amok, I will ring later, if she is really bad I just send love. I’ve been doing this every day for over a year. I started ringing SMIL every day in lockdown and promised I would continue.
Sometimes when they hand her the phone she presses all the buttons, on a few occasions she hit the phone bearer with it. Sometimes she can say a word, sometimes I just chat into a void.
I try to send a parcel once a week. A card I’ve made, pictures of the grandchildren, a bit of chocolate, clothes when she lost weight. Something non verbal, something easy to understand.
Imagine my surprise this morning when she responded so sanely.
I asked how she was, chatted about the nice weather, asked if she needed anything and waited to see if there was a reply. She was obviously trying to speak so I waited.
SMIL said: I just want to thank you Jane for staying in touch, thank you for the phone calls, thank you for being there.
I couldn’t decide whether to burst into tears or fall off the chair. In the end I just reassured her that I always would be. I told her I knew how terribly her life had changed recently but that I would not, she could ask someone to phone me and I would always try to phone her; in a changing world I would be the same.
Your demented person is still in there. They are lost in their own brain. Like a person imprisoned behind a jumble of electrical wiring, they are still there, lost and severely damaged but still themselves.
Don’t sever the lines of communication with your demented person. Keep trying. Set the example for the generation coming after you.
One day we will all be old with bits dropping off.
If we are lucky.