Parkinson's like symptoms - another set-back for my poor Ray
A page in the diary "Sue's thoughts on life"
Written by suew Saturday, 17 July 2010 15:30
I have been a full-time carer for Ray for eleven years. It is a very long time. My friends and supporters say I am doing a wonderful job and sometimes that is true. But sometimes I am selfish and self-centred and don’t want to look after Ray and then I am not so wonderful and that is not fair to him.
I have had bronchitis for the last week or so and finally went to the doctor on Thursday and got anti-biotics. We had a handyman come to start on some small jobs on Thursday and I was trying to answer his questions with my head buzzing and banging because of the fever and blocked sinuses etc. My brain didn’t want to process the information and I felt really uninterested. I suddenly realised that is how Ray feels most of the time, foggy headed and confused and probably as bad as I felt on Thursday.
Who cares for the carer? The carer does, she just goes on putting one foot in front of the other till she gets there. My wonderful friends who live in normal households tell me to take it easy, take care of myself etc. They don’t realise that it is essential to shower your husband when he first gets up because he smells and is in need of a wash off. Then you give him his insulin, get his breakfast, do his meds etc and the day begins. Half my friends would still be in bed at that stage, wondering whether to put on the blue outfit or the pink outfit, with matching shoes. They live in “Retirement World”. I don’t.
This is not a vent or a rant it is me looking at reality again. I have a husband with dementia. The dementia is getting worse and more conditions are starting to appear. I thought he might have Parkinson’s as sometimes he gets the shakes on his good side and even in his neck and head. I asked the neurologist on Thursday as he looked at the latest MRI and he said with all the brain damage, with the strokes etc it is possible to get Parkinson’s type symptoms as the same parts of the brain are now affected.
My poor Ray, how unfair is life for him? Diabetes, dementia, walking problems, swallowing difficulties, some kind of central nerve pain, Parkinson’s like symptoms, does the list never end? We knew nothing of this when he had the first stroke almost 20 years ago and was diagnosed with diabetes; we were told it was nothing, all curable, not a thing to worry about. So is it too late to worry now? (That is a joke – okay?)
I read on other forums on Alzheimer’s Weekly the American site and Talking Point the English Alzheimers Society's site, of so many people who are dealing with problems so similar to my own. On those forums as on here we support each other and commiserate and pass on tips and advice and generally try to make an unbearable situation acceptable.
With or without help we just have to accept what is happening and get on with the job. It is easier if we have some sense that there are others struggling with the same problems and they understand what we are going through. But our own personal reality bites and it is hard to take sometimes. But we plod on day by day, doing the best we can. What wonderful people we are – most of the time.