I am still recovering from a horrible incident yesterday, when my mother telephoned and harangued me for half an hour. I had to hang up on her, which I regard as failure on my part. I was starting to have a tightness in the chest and round the shoulders and subsequently did have chest pains for about five hours. My husband had been to the doctors; his blood pressure is sky high, no doubt mine is too but I’m not going to take it.
I searched all the carer’s literature; all I found was a warning if physical violence is brewing, almost always directed at the principle carer, to remove yourself from the area. I suppose verbal violence is much the same, all I know is that it made me feel very ill. What sparked it off was delivery of the groceries. I have for some weeks been ordering the groceries for my mother by Internet. Back in the spring when she was well enough to do it, we used to take her to a big, posh supermarket, which she enjoyed very much. Walking round clamped to a trolley was good exercise for her and if she got tired in the middle of it my husband supported her to the cafe and got her a coffee while I finished the shopping. Gradually she managed less and less of the walking until she stopped going altogether and we went, got the list and did the shopping for her. After a couple of months of this, I realised she wasn’t going to be able to go to the supermarket again and that I was wasting time she would have preferred me to be spending with her, so I dusted off my computer literacy and got to grips with Internet shopping. The first time the debit card from our joint bank account wouldn’t work and the bank had to be co-opted to get it authorised. On the phone they were very helpful. There was a tricky bit where I had to be on the phone and on the computer simultaneously to read the screens to the chap on the other end of the line. As the computer is several feet away from the phone I would have been stuck or racing to and fro but handily my son came to the rescue and drove the mouse while I navigated the bank. After a couple of hours it was up and running and the order placed and now, a few weeks later, I do the shopping from my home with the assistance of the care worker, who will check to see what is needed and help me write the first list. My mother, previously advised that I’ll be shopping that morning, has thought of, or forgotten, her list and, prompted three or four times, will eventually, at present, tell me what she wants and then it’s only a matter of an hour on the computer to try and get it exactly right and it will be delivered to her home the following day. I think it is very important that she is consulted and try to make the consultation as low key and stress free as is necessary for someone whose main symptom is memory problems.
First she complained that the delivery cost was disgusting (it was four pounds, about a fifth of the cost of petrol for us just going there to do the shopping) so I booked a later time slot which cost a pound less. Then she complained that the care workers were unpacking all the bags and she didn’t know what she had, so I sent it without bags and she complained it was all over the kitchen, so I sent it with bags and she complained her kitchen was full of bags. Then there was too much, then not enough, then it was wrong the care workers were being fed by her, then they were eating their own sandwiches up in her study, then she couldn’t have guests in her house without feeding them then her house was full of students who she was feeding, then she was having to cook for a multitude then only one person had offered to cook for her and so on and on and on.
I believe it is a feature of the disease that whatever has troubled or pleased the sufferer in their life will continue to do so in an amplified fashion. My mother’s chief occupation has always been to throw dinner parties. She is actually a fantastic cook, when we watch competitive cookery programmes on the television, she knows before the contestants do, when something is going to go wrong. She will say: ‘That sauce is going to curdle, he isn’t stirring it enough’, while the celebrity chef is still nodding approval and the contestant is still looking smug. Moments later, to the surprise of several million viewers, a celebrity chef and a sweaty cook but not to the surprise of my mother the egg and the oil and the cream all part company and lo! the chap on TV is suddenly making watery scrambled egg instead of hollandaise sauce or whatever.
The other joy of my mother’s life has been complaining. In the town where she lives there are still shop assistants receiving counselling after not serving her quickly enough or insufficiently obsequiously. I remember her saying after a shopping expedition: ‘I ran him the length of my tongue’ and being delighted with herself for doing it and reporting it. She has torn so many strips off local grocers I’m surprised there are any with skin left at all. Nature designed her to run a multinational company with a whip and her tongue. Her father and mine nurtured her to sit on her bottom and do nothing. Stirring the two together has produced a poisonous mixture which was contained and amalgamated into nothing more than excessive sauce, when she had working frontal lobes. Now she is unleashing curdled vitriol in my direction, apparently simply because I’m doing the shopping but really because she is an unpleasant person with a disease which makes even nice people nasty.
It was so bad the carer rang me on her mobile to see if I was OK. Only just. The chest pains have stopped this morning and I’m going to do a work out, gently and then stick my head in my dolls’ house.
If you are just beginning to go down this path with a relative, I would advise you to make your care plan taking into account the type of character you are dealing with. At the beginning I recall my husband and I joking that if dementia alters your personality, maybe she would become some sweet little old lady. Well, from our point of view dementia does alter your personality, it makes it worse. All those sections in dementia manuals about challenging behaviour, seem to me to be greatly underplayed. I am so glad I co-opted carers of my mother’s choice long before she needed them. On this journey you need the best qualified professionals you can lay your hands on. At £330 per 24 hour day, even though this will mean we have to sell my mother’s house to pay for her care, I think it’s a good bargain because it means that what I will inherit is the rest of my life. Yesterday my husband and son both told me not to ring my mother back but to let the professional care agency, for which I was paying so much, to get on with it. So I did.
Wherever you are, I think the best option is to agree with your sick person the contingency plan, while they are well enough to understand, to get their agreement and to research all the cost options and find out what you can afford and have it all ready and set up so you can put it into effect with a phone call. When the day comes that you think you are going to have a heart attack because someone demented is screaming down the phone and asking you how could you do this to them, you’ll be glad that you did.
I might have high blood pressure and chest pains and a strong urge to stick my head on the nearest railway line but what I don’t have is a guilty conscience. I know I am doing not only the best I can for my mother but I know that the care package in place was her choice while she was in her right mind. Given that I’m looking after one of the more difficult people to please in the universe (in fact impossible to please because the point of her complaining is not that she can be pleased, it is that she enjoys complaining) I know I am doing it right because it was her choice.
And now I shall go and stick my head in a house. I shall be exhibiting at Bantock House dolls house fair, in Wolverhampton on Sunday 20th October. I should be delighted to see you there. Although it is a little fair, the exhibitors are mostly Miniatura exhibitors, so it is quality and affordability. I am taking all the usual and also a 12th scale school which I made. It needs the roof putting on but is otherwise ready to decorate. I am selling it at the price of the cheapest kit because I need the space.
Space the final frontier; what do they do with the demented on the star ship Enterprise? Have they developed a Hypo Spray for it? Or do they just open the airlock and wave them goodbye? I wonder.