Downward.

It seems that SMIL has been moved into the wing of the care home for the most demented residents.

When she first went into the home her daughter argued that she didn’t belong there, and, at first, this seemed true.

I try every day to talk to SMIL on the phone but this is not always possible. Sometimes she is violent and phone calls are perceived by staff as making matters worse.  Today lunch was late, so I phoned afterwards but was advised she had taken herself off to bed saying she had run out of energy.  Her daughter reports SMIL as frequently lying or sitting on the floor.  Last time her daughter talked to her SMIL said she was about to be raped and burst into tears.

All of this seems so far from the situation at this time last year, that I would not have believed you if you had been able to predict this future.  Then SMIL’s son was still alive, visiting two or three times a week, taking the groceries and staying for a few hours.  He came round at the weekends and they had a nice meal.  When I phoned every day during the week SMIL begged me to stay on the phone, often putting her lunch to one side, even though I said I would ring back later, in order to have a long chat.  Nowadays ten minutes is about the most SMIL can manage.

I have found other ways to communicate.  I send cards I’ve made, often with pictures of the grandchildren, or little bars of chocolate.  On Sunday SMIL said she was short of underwear, so I got a couple of packs of M&S’s finest, embroidered her initials on them and sent with a card and some chocolate.

I sent and took cards and pictures to my mother. Some years ago to an uncle, when my aunt died, I sent postcards, as he found letters threatening.

In an unfamiliar place, especially when that place is the inside of your head, any sign of home, especially a sign that you do not have to make the effort to interact with, is grounding and a reminder of who you are. It takes an effort to keep up, especially in the face of no response. I did not go to my uncle’s funeral, there were mitigating circumstances, mainly that the previous day a radiator in the lounge developed a hole and a fountain that destroyed the carpet before it was discovered and the plumber could not be in attendance until the following day.  All of this sounds like an excuse, true as it is, with hindsight it is the hardest thing to keep pouring care into a void.  After a couple of years I’d had enough.  I am, like us all, a work in progress.  I have learned and improved as circumstance has taught me.  When I was younger I tried to rescue people and if I could not, gave up.

From the other side of care, I was horrified at the number of people who deserted my mother after saying they would not be strangers.  I have no idea how many dinner parties my mother had given, it must have been in the hundreds.  She was a great joiner of societies, also notable by their absence.

SMIL’s daughter, who has been let off visiting duties for some weeks by Covid, has an appointment with her mother on Friday and, I believe, is dreading it.

I am sure I have told you before, (I have certainly told SMIL’s daughter,) the story of my aunt and the sprouts.

My aunt, my mother’s oldest sister, who saw my mother, despite her fangs, as her cute little sister, did a good thing. She was not put off by the word ‘dementia’, instead ringing my mother regularly.  She only checked in with me a couple of times but told me she was finding the conversations difficult.  Accordingly, at the start of the telephone conversation with my mother, she informed my mother that she wouldn’t have long, because she had just put some sprouts on to boil.  If the talk took a tricky turn, my aunt would announce that she could hear the sprouts boiling over, and quit the conversation in some haste.  It was fully two years before my mother said that she didn’t know what was the matter with Vera, who had lost her cooking skills and was living almost entirely on sprouts.  My brave aunt continued to talk to her little sister until she died, even through some of the worst phases when my mother was ringing late at night and swearing at her, before I asked the carers to pull the phone plug out of the socket at night.

I don’t think my aunt, crucially, promised anything.  I tend not to promise, in fact the only promise I ever made was my wedding vows. Promises are dangerous.  I had to barter with the vicar to get the words ‘obey’ demoted – he allowed me to say them under my breath, but did not observe that I was doing so with my fingers crossed. This at the time was a lot to do with my mother – she who must be obeyed – but from this perspective, promising to obey an alcoholic would not have been a wise move.

Promising to always be there for a demented person would be similarly foolish.  All we ever have is today.  Promising to make things better would be an impossibility.  You cannot get into the brain of another human and change it for the better, or at all. There are more potential connections in the human brain than there are atoms in the known universe.

What you can do, is what you can do.  A four hour visit to someone very ill is not a visit that will benefit them at all, it will just tire them out.  Feeling that you have done your duty and then not getting in contact for another few months is not very good, and certainly does them no good.

Little and often is the key to it all.  If you leave things for a long time you will build up the difficulty in your head to mountainous proportions.  Talking to a demented person can become an impossibility faster than you can believe.  So don’t do that. Do five minutes just saying hello to someone you love who has now become ill.  Just pop a card in the post.  It does not have to be a long letter. A postcard with ‘thinking of you’ on the back in your proper handwriting is a comfort and a help.

How do I know?  Having had cancer twice, I remember two or three instances of interaction vividly.  After the death of my mother-in-law I had just been diagnosed when my father-in-law came to stay.  I told him I had been diagnosed with cancer.  He replied, ‘I don’t want to know about that,’ turned on his heel and walked away.  Then there was the recent time after surgery when the OH came in from the pub when I had just, post surgery, vomited a litre of blood, he chucked it down the toilet, told me I was playing the sympathy card and walked away.  But in the recent post cancer difficulties, two old schoolfriends clubbed together and sent me a wonderful bouquet of flowers, in a vase, with a lovely card to say they hoped I would get well soon.

A little sign of care or concern makes all the difference in the world.  I send Christmas cards now to my two old schoolfriends and keep in touch. Happily, gratefully.

So if you are having difficulty staying in touch with someone demented in your life, buy a postcard, write it, stamp it, put it in the post box, a work of a few minutes in your day that will make a huge difference to the recipient.  Buy a few postcards while you are at it, and a book of stamps, then, when you already have the postcards and stamps, it will be easier next time.  Put on some sprouts and pick up the phone.  Never doubt that any small kind contact is a help.

Incidentally if you were wondering about SMIL’s talk of rape, I will, when I next talk to senior nursing staff just check that all is well and that SMIL is not receiving unwanted attention of any sort.  I always ask when I ring, if SMIL has any pain anywhere. Last week she had hurt her foot, so when we finished the chat I rang the office and got someone to go and look at her foot, having asked her if she would take painkillers if they gave them to her and received consent both to look at the foot and take the painkillers. It is worth remembering that care homes have residents that have arrived there by many routes, not all will be lovely old dears.

All of which is, of course, a good argument for keeping your demented relative in their own home as long as you possibly can with whatever help you are going to be able to muster.  It cost me half a house the first time and a whole house the second time, frightening but worth every penny each time.  Because, when you get down to it, on planet Jane what goes round comes around, it’s just like the lottery, it could be you.

When I had cancer the first time, it was relatively rare. Now, forty years later, one in two of us will have it at some time in our lives. It begins to look as if dementia is following similar statistics.

The path of a disease for which there is no cure yet, is a downward one with dispiriting lurches, bumps and sudden plunges off unseen precipices.  But if it is not you on this journey, let your gladness and relief take the form of being the good occasional companion, who is the bright spot in a day.

Invest in a postcard to polish your soul.

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