There are some and I have just had one, so I thought I’d let you know. One of the purposes of the dementia diaries is to encourage relatives to engage with people who have this disease. Contact with those whose brains are not working within the parameters of normal can be challenging to say the least. Part of the problem is that, for many years, the sufferer may look as they always have done until they speak and reveal their thought processes are not as they were. Their utterances may prove challenging: they may talk nonsense, slip backwards in time and appear to be living in a different time frame, speak as if family members who died long ago are still alive. As the disease progresses they may be verbally aggressive, may lie, may argue, make false accusations and so on and these are only the verbal challenging behaviours. Physically they may behave in any inappropriate manner you can think of, from taking all their clothes off to hitting you with their walking stick. They may exhibit various signs of emotional disturbance, crying for no apparent reason, being indignant with no stimulus, uttering profanities with no provocation. And so on through most types of behaviour people are capable of exhibiting, all upsetting to onlookers, difficult to deal with, tricky to stop and tiring all the time.
And yet, even this far into the disease, which I calculate my mother has had at least six or seven years, there can be happy visits and nice days. This of course is why it’s worth persevering with your difficult demented relative. It is for them that you do it, because you could be ill this way too but it’s also for you. First, you will live after they have departed and then you will be glad that you have an easy conscience and did not run away. There will be people who will run away and which people they turn out to be may surprise you. Second you never know when you might have a nice visit and no matter what happens afterwards this is a visit you can remember. I can’t think of a third reason, these days I am scraping the barrel a bit, when I look in the mirror I appear to be doing barrel scraping with my eye sockets; without the make-up I now look dreadful all the time but if I can do it at five foot two and theoretically retired with a husband who dives to the pub the minute we get home, then it can be done.
The morning did not start well. My mother rang to complain first thing. Not about anything necessarily, just to complain. She was surprised to hear we were going to visit, as it felt like a Sunday, but somewhat mollified and promised to have a list of what was wrong written out for me when I arrived.
You would think this would make you rush there like the wind to discover what was amiss, wouldn’t you? So we arrived late and later than that because there were traffic problems. But as we walked in it was apparent preparations were in progress as all the dining tables were being laid with black and gold decorations and Christmas crackers. And for lo further down the hall a blackboard informed everyone that there was going to be a party from five until eight in the evening that very day. Striding down the hall was my mother who, surprised to see us, told me she was going to the office to see if they could buy Christmas cards for her because she couldn’t get out and no one had helped her to get them because she had just been abandoned. However as luck would have it the two packs of very superior cards I had brought for her were in the bag I was carrying. I had to coax her to come back up to her room and look at them and there was a good deal of muttering on the way about how unsatisfactory they were going to be. I, knowing the recipient, had bought the poshest mail order cards I could find which were like medieval triptychs and very nearly solid gold and diamond encrusted. She examined them in silence as long as she could manage it ( silence has never really been her forte) and could not prevent a couple of ‘ooh’s escaping and then said she supposed they would do though she didn’t really want to send them to people as they were too nice. So I pointed out that there were two of each in each pack and two packs so she would be able to keep the best ones herself.
I had also brought decorations including a garland for the fireplace which I knew she would love and a tiny tree, and the present she will give her great granddaughter to show her before I take it away to wrap it up. And they were all OK. Then I suggested I wash her hair so it would be nice for the party and she agreed, even though she wasn’t sure she would go downstairs and grace them with her presence (I was not fooled, she is the original party animal). And when I looked in the wardrobe the sewing department had attached labels to her best velvet swirly skirt as requested so I dressed her and combed out her hair and found the bling and overdid it and over did it a bit more because the Queen wears a necklace and a brooch often and by then she was excited but not letting on and so cheerful she didn’t even go bananas when her ‘diamond’ bangle snagged her tights and she was finished and done in time to have half an hour rest before the party started.
We went downstairs to find the staff trying to put the more difficult or wheeled old people in place, a fruitless task without strong glue and we left feeling cheerful.
And tomorrow, if she remembers, I will hear how she did look better than anyone else (though we did see an old gentleman in full dinner suit polished to perfection because it is a very posh residence for the very posh of a very posh town) and whether or not she won prizes and what rubbish they were and how much better she would have done the catering. Though, this last, maybe not, as I learned she has made friends with the cook on the staff and they discuss matters culinary at length.
All in all a good visit and if it were the last a good one to remember. Who would not like to make an exit after a triumph at a party? And what is the point of a party if you cannot be better than all the other partygoers and then boast about it to your family?
91 outside, 16 inside.