Welcome to a new category in the blog. I have been avoiding this for some time because I wanted the blog to be mostly cheerful. The blog, however, accurately mirrors my life and interests, as any blog is bound to do. Anyone who has ever aspired to be a writer will have found the first advice to be ‘write about what you know.’ Currently the topic of dementia consumes my every hour; I know I’m thinking about it while I’m asleep when I wake with my teeth aching from the grinding. Also, I realised, if I put my struggles with my mother’s dementia into a category it can be more easily found, or avoided.
750,000 people in the UK have dementia; this figure is set to double in the next thirty years. It’s like cancer, a thing you can only ignore for so long. If it hasn’t affected you or a family member yet, it will. I think it helps to know someone who has travelled the road before you, so I’ll try to put some signposts up that could be spotted along the way and tell you what has been helpful to me and what has not. At present help is patchy but care agency recruitment posters are springing up everywhere. If you know someone looking for a job, the care industry is burgeoning, it will have to, to cope with the demand. We are all living longer. I remember television programmes in the 1960s about how wonderful it would be at the turn of the century when we all started living longer. No one foresaw the tricky problem of us having only been designed to live for a certain length of time. We haven’t even really understood the working of the brain fully before it has become obvious how susceptible to damage it is, how adaptable it is and how very difficult it is to deal with a brain which is ceasing to function, when you cannot see this by looking at someone’s head.
As you will know if you’ve been reading my problems with my adopted mother, whose vascular dementia became apparent through a brain scan that was performed when she was taken into hospital with her dying husband, distressed beyond all reason, she is not the first in my experience. Though my father had been making whirly whirly beside the head signs for some time, mostly while remembering to stand behind her, we all thought it was depression caused by the stress of looking after someone dying from heart failure that was getting to her. The early stages of dementia are difficult to diagnose, especially in someone who is an awkward person to begin with. The first thing we have to remind ourselves of when dealing with the brain is that normal is not an absolute, it’s a range. Nevertheless, if you are dealing with someone who is normally nice, it makes it much easier to spot the odd behaviour that is the first clue that something may be amiss. So it was with my mother-in-law thirty years ago. When she, a gentle soul, began being confused and aggressive very shortly after my husband and I got married, it was obvious that something was wrong. So few people had heard of Alzheimer’s then, that, once we had had it explained to us, we had to explain it to everyone else. I very much doubt you had to go and look it up, after that last sentence. You knew didn’t you? That just goes to show you how common this is becoming. Alzheimer’s is characterised by being a disease of slow and gradual mental decline. My mother-in-law declined for five years until she starved to death weighing less than five stones. I looked after her every other long weekend for five years, so I got a good look at mental incapacity in someone I did not know well, and was not as emotionally involved with as I have been with subsequent sufferers I know.
Also ill at present is my husband’s aunt who was the carer for her sister on the other weekends. She is now in a home, having suffered brain injury during an operation, resulting in dementia. We used to visit her in Scotland when I did miniatures shows there and got to know her very well, she was a terrific person with a wonderful sense of humour. Also ill is a cousin’s husband, who has Parkinsonian dementia, with Lewy bodies, he has now gone beyond home care and is in a hospital.
I’m only one short person but that’s four demented people in my life, how many in yours?
In the coming weeks I shall document what’s happening, what you can do about it if you become the carer and how to avoid getting it yourself.
Right now I’m off down to talk to my mother. At the end of this week the care agency rang me, late at night, a few hours after I had just done a twenty four hour shift, caring for my mother. My mother had ejected them violently from the house, was refusing care and getting very verbal. I have so far been avoiding using the term ‘demented’ to my mother. I have told her she has hardening of the arteries, which is true. I now have to tell someone who cannot remember what day of the week it is and who frequently thinks I am her sister, or husband, that she is demented, and that she must not refuse care violently because, if she continues until she is a danger to herself or others, she will be sectioned under the mental; health act 1983 and her whole house with helpers costing £9,000 a month will be swapped for a little quilted room with a bed, and maybe a chair, but only if she doesn’t throw it at someone. I have to explain this as gently as I can and help she who cannot remember a fact for five minutes at a time, to remember it to save herself.
To help me in this difficult task, I will be taking the bag of clothes she ran round the hospital hitting other patients with during her last visit. This has turned up again, the hospital rang to tell me. The hospital have been brilliant, the doctors have been wonderful, the carers have been incredibly able.
Can I match their standards and convince my abusive. difficult, demented mother to always keep a hold of nurse, for fear of finding something worse?
Stay tuned, I’ll let you know.
JaneLaverick.com – never boring.