Again I find myself writing about the effects dementia has on the wider family. I don’t want to encumber you with thoughts that might be depressing, if everyone in your family is bursting with good health. If they are, enjoy every minute and, instead of reading this, click on one of the categories in the column to the right. The Parrot has landed is all humour, so is Mrs Beetroot.
However, if you do have a family member who is struggling with ill health and it is affecting you, read on.
The situation is that my Step-Mother-in-law, whose health tumbled downhill in isolation, during the lockdown, but was supported by her adult son, who lived in the same town, was diagnosed with Alzheimer’s disease, a couple of months after her son committed suicide. Her daughter, who lived at a distance, had social services caring for her mother, four times a day, but SMIL became noticeably very strange when suffering from backache, or any pain at all. Noticing the behaviour, the social service consultant then determined that SMIL should be placed in a facility with twenty-four hour care. As this could have been anywhere with a space in the area, the daughter acted and took SMIL to a nursing home in the next village to her own. This took SMIL away from all that was familiar. At first she seemed to do well, chatting to the other residents, but quickly became very demented refusing to wash or dress.
I have become involved at a distance. Realising the implications of SMIL losing her familiar and happy life, which involved a different, busy, social activity every day of the week, I began telephoning her every day at the start of lockdown and have done so ever since. We get on well. My father-in-law’s second marriage, once his first wife had died of Alzheimer’s, was to a much younger person. Not only is there is just sixteen years between SMIL and me, her birthday is the day after mine. We share similar views and have enjoyed Dolls’ housering and card making and paper crafting together for thirty six years.
When my father-in-law remarried, he was keen to get on with his new, happy life after five terrible years. The OH and I were a reminder of the sad years, during which he came and stayed every other week for four days, so, whilst I wouldn’t say he shunned us, I would say he got on with other things. His sister-in-law, who he stayed with on the other weekends, was similarly rejected and surprised. I never really embraced his new family, he didn’t even want to visit us at Christmas, which left a void, which puzzled the S&H, Christmas always having been Grandad’s visit for one or two weeks. I didn’t need to explain that Grandad preferred his new family, the S&H was bright even at four.
As you know, my mother also had dementia, she died in January 2017. The care of her was a very illuminating experience, particularly the way I felt after she died. A few years later, her older sister, who reached a hundred and three, died, also in a care home, having spent most of the last years sitting in a chair staring into space.
From these experiences I would say it is almost a normal and a healthy reaction, for family members who have been involved in the care of an elderly and very challenging relative, to feel immense relief when the difficult person dies. My aunt’s daughter and grandson were at pains to tell me that there was no need to be sad, at all, for someone who dies at a hundred and three, and they said it in very cheerful tones of voice (though the laugh afterwards may have been very slightly overdone.)
I told SMIL before she left home that she wasn’t going to get rid of me easily and I have rung every day since. The phone calls are not direct. She can no longer understand her own mobile phone, though she could manage to call the police on it, whilst in the nursing home. Accordingly I ring the office, speak to whoever is available, which has been a resident on a couple of occasions. I request a member of staff will find the nurse’s phone, the mobile which is shared by all the residents. I wait five minutes while the luckless member of staff charges round the home looking for the phone, then I ring the number of that phone and ask to speak to SMIL. This doesn’t always work. On a couple of occasions other family members have been visiting. On a couple of occasions SMIL has shouted at me and banged the phone on the nearest resident, or furniture. Yesterday she was lying on her bed and couldn’t be bothered to speak to me. Sometimes the staff advise me she isn’t well enough to talk.
Some days I ring back at a different time. Some days I am advised not to and request that staff tell SMIL I called and give her my love, whether they manage this or not, I don’t know.
One of the features of care homes, which is obvious on your first visit, is that you couldn’t possibly work there if you were a lazy person. Staff do very little in the way of sitting down and very much in the way of keeping their temper in the face of provocation. By now I have spoken to many of the day time workers in SMIL’s nursing home, some I like very much, one not so much. SMIL’s daughter has a good rapport with one worker in particular.
It is apparent from the moment your family member enters a care home that it is a busy place in which your family member will be just one small problem. One care worker was keen to tell me of the time SMIL was standing in the dining room pointing her stick at the other residents (who were keeping their heads well down and terrified) and threatening them. I have written constantly about aggression in dementia; supposing you had charge of an entire home full of people like that?
Once you cede control, your demented person will lose their back story. The person who dandled you, knitted your school jumpers, saved up for your Christmas presents and took the dog on the last trip to the vet while soothing you, is gone. In their place, care home staff are meeting, for the first time, a threatening elderly person with strange bodily habits and a penchant for calling the police and setting them on you, if they take agin you.
All of this is a very good argument for keeping the demented person with you or in their familiar surroundings for as long as possible. My mother only went into the care home when the money for the monthly bill for care in her own home, £13,000 at the time, could no longer be met by equity release and the only option was to sell the house and realise the rest of the money locked up in it. Including spare funds that would ensure continuing care in the home for an unpredictable length of future if something happened to me. Four and a half years after diagnosis, still in her own home, my mother was well enough to discuss the situation with me, understand the move was financially inevitable and visit her flat in the home to approve it. She chose her own decorations and carpet and joined in with ‘new address’ cards to her friends and family.
Contrast this with the behaviour of SMIL, who, only six months after diagnosis, constantly asks where she is. Of course, my mother had not had a global pandemic and the loss of a child to deal with. During the pandemic repeated blows of fate and their affect on mental health, has been a recurring motif in news broadcasts, I suspect in most democracies.
We are pre programmed to feel most confident in familiar situations. The lift engineer told me that of all classes of people stuck in lifts, those that panic least are, reliably, children. For them, everything is new and they are just learning how to respond to situations. I remember interviewing a South African miniaturist whose parents were horrified on a camping trip with her as a child, to find her stroking a puff adder because she thought it was pretty.
By the time you get to your eighties you are likely to be set in your ways and find comfort in the familiar, whatever that is for you. Abrupt removal from the familiar on top of numerous other blows would be enough to destabilise a sane person, as news broadcasts bear witness. For the demented person, it’s the push over the edge.
You may now be ready to cast SMIL’s daughter as the villain of the piece. She is not. She lost her brother recently under difficult circumstances, has been trying to help her niece, who is only a student and yet managed to move quickly to save her mother from possibly being sectioned somewhere terrible miles away. If that had happened her mother would not have been rescuable, unless she exhibited calm and sane behaviour, guarantee able by her relative, which in light of subsequent events, would never have happened.
Her daughter is currently fighting a Deprivation of Liberty order by swatting up and begging for an extension of current circumstances, in pursuit of which she is in attendance and coaxing her mother to get showered and dressed. I went shopping in a well-known high street store with a good returns policy and sent SMIL a new outfit, as encouragement.
The truth remains. Every person is an individual. How they respond to a situation may have similarities to other people in the same situation but will still be an individual response. You absolutely cannot control their response. You cannot control the response of other individuals to your relative. The first night in the care home, my mother’s engagement ring was stolen by another resident, who then went round showing people her new jewellery. My mother never got the ring back. My mother, racially prejudiced, hated the second-in-command, who was Jamaican, with such a passion, I was glad she died before the second-in-command was promoted.
The government has been caught wondering what to do about the care crisis. There are nations who do not have a standing army. Instead, all able bodied citizens are expected to do a few weeks every year as soldiers, most regard it as free keep-fit. Perhaps we should have a similar system in which everyone spends a week as carer in a care home, or a geriatric nurse.
At the very least it would help you to value every day of your life and freedom.
At the most you might find a new career in which, if you have the patience of a saint, are physically fit and don’t let things you can’t control get you down, you’ll have a job for life.