how much is too much?
Entry posted by Guest
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When Ray is sick, has another TIA or stroke I put my life on hold for a while. I have been caring for him at home since September 1999 so that has been a while. In that time I have had three days break twice a year. I have not at this stage put him into care,nor have I had to leave him for any reason. I am not saying I am a saint, I am just stating the facts of our life.
For maybe twelve months or so I have noticed a change in Ray. It is not so much that he doesn't listen, or doesn't understand, it is more that he does things his way and scorns what others say. This is obvious in ways that family are beginning to notice like if we are going out he will "go off to find somehing" but when I actually ask him what he can't remember. He now forgets what day it is, he forgets that I have asked him to do something, he doesn't deliver messages or remember what people have asked him to pass on. If I question him about it he denies that it ever happened. All of these events could be part of the onset of dementia, or they may just be personality changes. Whichever they are it is getting harder to live with him.
Ray is not a shouter, an abuser or a violent person, he is a passive aggressive. He sabotages rather than destroying. He has been unco-operative the past week or so, slower, more reluctant to get up and get going. I've asked the doctor about anti-depressants but he tells the doctor he is "just fine" and smiles the boyish grin.
I feel it is all getting on top of me again. I felt like that at the time I joined this board. I knew Ray had had another stroke and needed to be properly assessed and to get access to rehab. In some ways nothing much has changed. He has had some therapy but without being willing to complete his exercise program at home he won't get his old fitness back, without me pushing him in the wheelchair all the time he won't be able to go distances or even stand for lengths of time. I'm doing a lot of running around on his behalf and he isn't/can't co-operate in his recovery.
When is rehab too much for the survivor? Is there a time when I as a caregiver need to say: "Okay, that is enough, let's just go slowly downhill until we hit rock bottom?"
I know that in comparison to a lot of others here Ray still has a lot of movement, he still is relatively young at 63 and well looked after as we have our own home and some income. His relations like others here don't want to know him and support him since his illness and I know that must get him down, especially at this time of the year. But even when our kids and grandkids are here he doesn't seem to want to interact with them very much. He talks for a short while and then looks at his watch, turns his eyes to the road, or his book or just stares into space. I wish I had someone to turn to who understands this sort of behaviour and could tell me at to do to change things for the better.
How much is too much for the caregiver? When is it time to say: "I can't do this anymore. Find someone else to take care of Ray. I've had enough?"
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