For the sufferer of dementia every moment is new and frustrating, for the relatives and carers, it’s groundhog day. I’m sure you’ve seen that film, if not, you’ll find it easily with a search engine, it’s one of Bill Murray’s finest. His character keeps waking up at six o clock every day, the same day, to Sonny and Cher on the radio singing ‘You’ve got me babe.’ No matter what he does or how he does it, he is doomed to wake in the same day, repeating the same mistakes forever, until he realises, that, trapped in eternity, he can make better use of the time because he knows what is going to happen next.
Dementia is like that. I definitely do got my mother, Babe. She has been fixated on costs recently. Early last week she rang me a little past eleven o’clock at night. The previous week she had no idea how to find the phone number, suddenly, unfortunately, having found the bank statement, she also found out how to work the phone. The at-home care agency costs about £10,000 a month, on a five week month. I write the cheques, having power of attorney over the bank accounts, which my mother granted eight months ago when she was still quite lucid and having difficulty writing her whole name to sign a cheque. We subsequently converted my parent’s old joint bank account to a joint account in the names of me and my mother, so I could have a plastic card to do the shopping for her when she could no longer struggle round the supermarket. Despite her suggestions, I left her old personal bank account, which she used mainly for clothes shopping, as her account solely. She did suggest moving the money into the joint account but only two months later was happy as a child to have a bank account of her own with some money in it. She kept telling me how her father opened an account for her and how he taught her to write the cheques, though by then she was living more in the past than the present. For the last three or four months I have entirely run the accounts, though she has opened the statements and read them and then left them for me to file, with little comprehension.
Suddenly late at night, with the carer snoring upstairs she had found the accounts, realised how much the carers were costing and was on the warpath. By the time she finished shouting at me and slammed the phone down I was shaking from head to foot and slept very little. The next day I rang the agency instructing them to send all the bills to me and to intercept the next bill, which they were sending to my mother’s house. Unfortunately they failed to intercept it, leaving me with an hour’s worth of haranguing by phone and then later half an hour’s worth. The annoying thing is that, as I’m re-mortgaging my mother’s house to afford her care, it’s my inheritance I’m giving up in order to have someone scream at me: ‘Do you think I’m soft in the head? You are soft in the head if you think so! I am not spending this! I am perfectly capable of living alone! Are you adopting a patient tone of voice with me again! Where is the carer? They are never here! I know where they are! They are doing that writing again! On my time! In my study! Do you know yesterday they went into my dirty clothes basket, my dirty clothes basket and got out my clothes and washed them in the machine. I said: You do not have permission, those are my clothes and my washing machine!’
And so on, you get the general idea, an hour’s worth at a time, all shouted with constant references to the fact that she is perfectly capable, she does all the shopping and runs the house. All of this with mixed diatribes that I am useless and have done nothing and not even been there much since my father died.
I have provided her with a couple of hand bells, as she complained the carers were all over her and she had no time alone, so she can summon them when necessary.
The bells! The bells! (I apologised to the agency in advance, but they said it was a great idea.) Now, of course, my mother complains she is paying through the nose for people to sit in her study, her study, and do nothing. Actually the care agency is doing a good job, it is now nearly three weeks since she last fell over, an accident that was happening weekly, prior to them moving in. How she didn’t break, I shall never know.
My current worry is that she will work herself up into such a stew her heart will give out. Last week I took the third lot of new clothes I’d bought for her (she had lost a stone in three weeks) and after trying on five garments, sitting down, she broke out in such a sweat, her forehead was running wet.
The aggression is primarily directed at me. The consultant dementia specialist’s nurse did a home visit, followed up by a letter, mainly full of observations about how badly my mother was treating me and with a suggestion that if it gets much worse the local visiting dementia care nurse should be called in. I keep looking a the knives in the kitchen and, having voiced my fears to the carers, won’t be surprised if we find ourselves eating our dinner with spoons in the future.
This bit of the illness is very hard to bear. The aggression is nearly always directed at the primary carer. When my mother-in-law was at this stage she insisted that her husband was having affairs but she did it very gently, as she was basically a gentle person. My mother is basically difficult and peremptory anyway but often with a narrow focus. She has a teapot which she bought in an antiques centre and loves, I made a tea cosy for it with cats on which she also loves. One of the carers has broken the spout. I asked if my mother was cross but she said she hadn’t said anything. because they were ‘all doing their best.’ If I’d broken it I’d have been taken out and shot. I have found a replacement in an antique shop locally. This being Historic Warwick, we are beset with antique shops so it wasn’t too hard to find a three cup replacement, a very pretty black and gold 1890 pot, which is long and slim, so I’ll have to make a new cosy with it as my mother will not tolerate anything other than scalding hot tea, made with fresh water and poured at exactly the correct colour. (Would you like you borrow my shade card?)
I think that the hardest things to bear are the twisting of the truth, something at which she has always excelled. When I was a teenager my mother decided I was too fat and had me locked up in a geriatric ward to be starved for a fortnight while they went on holiday. She did it twice until I became clinically depressed and didn’t speak for a year and tried many suicide attempts. Over the years this has become her cross to bear; she now shouts: You were so gloomy, going round with a long face, it was so miserable for me. I had you to put up with! I had you ill when I needed to be entertaining! Can you imagine how difficult that was for me!
This is the problem with groundhog day, the repeated insults and lies get worse and worse. The sufferer will turn the truth inside out and hit you with it repeatedly. I have now reached the stage of being frightened of the phone. Last night I felt thoroughly suicidal again because I just wanted it to stop. I really do not know how much more I can bear of being screamed at by a demented person, knowing, as I do, that no matter how well I deal with it, this is groundhog day and I’ll have to deal with it all again tomorrow.
Unlike Bill Murray, I already had a trick up my sleeve. I have a new dolls’ house coming in the post and, when thing get really bad I go Internet shopping for things for the house. When I cannot sleep I build the house in my head and have somewhere happy, which I can control, to put my thoughts. I went and did a bit of home shopping at the peak of the current awfulness. I dragged out all the bits from behind the door and up on top of the shelves that I bought and stockpiled for Mr Pepys house, which never got built, the teddy hotel, which never got built and the country cottage (which never……..) All are in 24th scale. The stuff I’ve got already I’m going to actually use. I’ve been saving it for a rainy day and I would have to say, right now it’s pouring. I have enough stuff to fill the house, including some lovely kits that aren’t made any more. I can’t wait to get started.
In Groundhog Day the Bill Murray character uses the repeated time to learn to play the piano, ice sculpt and save lives along the way. If you are stuck with the groundhog day that is dementia, you could do worse than make the kits, build the house and save your own life along the way, because the way along might be a long way, a very long way.
For the sufferer of dementia every moment is new and frustrating, for the relatives and carers, it’s groundhog day………………………………….
JaneLaverick.com – another column! Is there no end to them? How much is this column costing? Free! What rubbish! Are you mad? I think you are mad, you are jabbering. How much did you say it costs to read all this? Free! Do you think I am stupid? You are lying, I’m not going to talk to you any more until next time.