I made the choice to be his carer for a while ....he is not my husband.....I know my limits and I will make the choice to not do some things.
I understand others have different views and different relationships. But for me I have my limits.
I completely agree with you silverlantern and I get a bit fed up of reading about so many saintly women who are slaves to their husbands/partners. It makes no difference if you are married to someone or not, it's someone you once loved, and so you feel an obligation to care for them in their illness, but there are limits. I think that if my husband was in his right mind he wouldn't want me to be sitting here depressed and lonely, frustrated by the things I can't do any more. That would be his care for me if he were capable.
We went to a social event last week, something he's enjoyed in the past, a late Christmas meal, but he got confused by the noise and chatter of 40 people, he ate the cold starter and the hot starter but then insisted that we leave before the main course. I was enjoying a rare night out and was fed up that he wanted to leave but there was no choice about that as he would have got angry and started making a scene.
Fortunately incontinence hasn't featured so far, though he does always take a leak while we're out walking, even just round the village. I just try to make sure that no-one's around.
The most recent challenge is 'pantomime DIY' - he used to be pretty 'handy' and could fix most things, now he's trying to do DIY but it's disastrous and he uses, for example, Savlon instead of glue and will not accept that it won't work. He is in the process of moving a picture, for no reason at all, he's made several large holes in the wall in the lounge in the process and after 3 weeks it's still unfinished. He is insisting on 'filling' the holes with glue. It's like the scenes in the pantomime where someone completely trashes a room in the guise of mending it.
I think you can see that I'm just about hanging onto my sense of humour, but we had such a row about the Savlon yesterday, even if I go and fetch the right stuff and give it to him he will not accept that he's wrong. He always was a stubborn person.
This morning he got up and put his coat and shoes on and announced that he's 'going to London'. That's his default when he's upset, so maybe that's because of the row yesterday (though I don't suppose he remembers it). I can't physically stop him leaving the house, he's like a toddler but he's stronger than me. I persuaded him to have a cup of tea and then eventually go back to bed but it was a close run thing. No idea what his mood will be when he wakes up again. Then I'm due at work today, as in order to keep some sanity I work part-time (17.5 hours, very flexible times). I know that many people would say that there's no way I can work and I should give it up to care for him, but I'm already getting counselling for depression and being at home 24/7 would really do for me.
Having carers come in several times a day wouldn't work. He can get himself up and dressed, he can sometimes make himself a cup of tea, sometimes not (cold milk with teabag floating in it), I make sure I'm home to get lunch, and if he goes out it's just a harmless walk round the village.
So we're struggling on, but quite often he doesn't know who I am and wants to go out looking for his wife. Several nights a week he's awake every hour, and I don't think a carer would help with that as it's just 3/4 nights a week and in any case someone else dealing with this would still wake me up.
So we're investigating a care home for respite so I can get a week's unbroken sleep say once a month, and be able to go out and live a 'normal' life. I know that many of the contributors to these forums would be scathing, as they're dealing with much worse than this day and night, but I have a life-limiting condition, I may have about another 5-8 years, and I'm not going to spend those as a carer. I'd like to think that in the reverse situation I wouldn't want to ruin the last few years of my husband's life by shackling him to me.
It's rarely said in these discussions, the whole tone is how terrible the life of a carer is but how it can't be avoided, and then there's intense guilt when they eventually go into a home. Well I don't want to erase more than 50 years of largely happy togetherness (we got together very young) by being forced to watch him decline day by day and hour by hour. My children don't want to see me dragged down by it either. So I will be seeking a home for him soon so that I can go on loving him but at a distance.
Sorry for the length of this reply, but I was saddened by the 'holier than thou' attitude of some of the answers on this thread. You have a life too, you have needs too.
