Yesterday was so tiring I did what I never do and went back to bed after I fed the cats this morning. I feel as if I could sleep for a week and still not get to the bottom of my exhaustion. At the beginning of the caring role there is a tendency to fling yourself in to the role as if the energy expended could somehow solve the problem. I wish I could time travel to tell my earlier self as a new carer just to pace myself and have more time off from the beginning.
Being wholly responsible for another life is tiring when it is a little life but more so when it is an adult, especially a demented and difficult one. I believe the carers have been my salvation. Optimal one to one care by people not emotionally involved has helped me on several levels. First I know that I am doing the best that can be done for my mother; knowledge which is reinforced each time there is a news item about an old people’s home where residents have to wait two hours to be taken to the toilet, or are abused by the stretched staff, or don’t have enough to eat. A distant relative who put her mother in a care home is now so stressed out and unnerved by the situation she is no longer able to visit her mother alone but has to take someone along for moral support. She is herself on medication and has had a breakdown, and her mother was nice before she became demented.
Mine is generally calm and lucid a lot of the time, a condition I attribute entirely to the level of one to one care. Her every need is met and anticipated so she never gets into a stressed or worried state. The effects of her medication are individually monitored and reported as is every change, so she never suffers a variation in health without immediate attention. Because of the carer’s sitting room and her bell she can have company, individually tailored to the level of conversation she can cope with, or not, so she is never either lonely or tired from entertaining. Far from it, she takes a keen interest in the carers and their families. Early in my care of her I tried to interest her in hobbies or pastimes and tried to get her to recall each day at the end of it because all the literature suggests that this type of pleasant memory recall is beneficial to sufferers of memory loss. I never imagined the thing to spark her desire to remember would be the carers themselves. Having grown up in a large family minding everyone’s business but her own, my mother absolutely revels in the minutiae of her carer’s lives, the more intimate the details the better. When she discovered one the of carers has been married three times, which qualifies her as a femme fatale in anyone’s book, her joy knew no bounds.
So, though I suffer on many levels from my mother’s disease, I do not suffer from my own guilty conscience. I do not think there is any superior care for my mother than she already has. She has dignity, privacy, the best accommodation, food, medication, company and care that there can be. It’s £330 per day’s worth of peace of mind. The visits, however, currently every five days or less, are still exhausting.
Yesterday, after I’d done the shopping, while the other half topped up the petrol and propped up the slowly puncturing tyre, we drove there at breakneck speed with the driver, who thought he’d finished commuting, swearing all the way. Arrived, unpacked and lunched I was left in the dining room for a couple of hours with my mother so she could complain. She has reason. Disintegration of the balance centre of her brain has left her feeling as if she is permanently moving. On her own private roller coaster night and day she holds on to the furniture and is frightened of falling all the time. So for a couple of hours each visit she complains and I explain. The only blessing is, that as her memory has vanished, she thinks she has only had this feeling of motion for a couple of months and each time she tells me about it, for her it is the first time.
After lunch I washed and set her hair, which was more cheerful as we talked of people with no hair, which, it turns out, is preferable to having no balance. So we had half an hour of shouted lament over the hairdryer that she has lots of hair, constantly moving. Next I settled her in her chair with her oxygen for a nap while I went off to the post office for money to pay the cleaner and the very kind chap over the road who brings the paper each Saturday.
Back at the house the sun was shining so I escaped to weed the garden and the low wall bits at the front, the weeds on the drive and the giant weeds in the back garden. The other half, who had been left alone with her up to his fill level, popped out into the garden just long enough to get roped into wiring the fence together again, after which I tidied up, put the massive builder’s bag of weeds in the car and went in for tea. We had another hour’s chat of this and that, mostly lucid and sensible and then left in time to get caught in the rush hour. If my other half swore at the traffic all the way back, I could not say as I fell asleep on the third motorway bit.
I am tired permanently and it does take all of the next day to recover from each day I visit. So I’m currently getting about three days of each week for me, excepting about a couple of hour’s worth of phone calls every day or more if there’s a problem or a shopping list. Realistically, added up, I have about two usable days a week for me; it’s the same as work but with no pay, in fact reverse pay as my inheritance dwindles by £10,000 a month to pay the carers.
Emotionally draining, each visit always features a good half hour of: why can’t she die, when will she die and why can’t I kill her, which is like washing your soul clean by beating it between two rocks. Nevertheless, I still have the comfort of knowing I am doing the best I can. I don’t think if I had moved in and lived with my mother that the care would have been any better because I’m quite sure I’d have been a small flat dead thing by now.
I read in the paper that in the next three years the number of old people needing care will exceed the number of young people available to give it. Perhaps right here and now I should consider myself fortunate. What we all do when the baby boomers get to old and dribbling, I have no idea, perhaps the next millionaire is designing the robotic carers, right now. They should have built-in fizzy water, kitchen rolls, heat pads and very big ears that will take a lot of bending.
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DrainedLaverick.com – terribly tired.