Hi SaraKate
Gosh, what you have asked will be different for almost all of us.
My husband was diagnosed post surgery and after he had sepsis in March last year.
Two years ago I was oblivious that there was anything wrong. Now, I realise that his symptoms had crept up on us probably over 3 or 4 years, but I just thought he was getting decidedly grumpy and his thinking had become lazy, it was easier to get me to fill forms, spell things, answer questions, etc.
If you read any of my earlier posts, I only joined last June just before my husband was diagnosed in July last year, you will read how devastated I have been, how I just want my husband back as he was such a short time ago.
Life isn’t easy. My husband has other health problems, and these have caused him to be totally urinary incontinent. I have to fit 5 day and night pads, he can’t fit them himself. He is aggressive and obsessive. He frequently shouts and swears at me if anything doesn’t suit him, and very little suits him. He wears me out. His dementia confuses me, because in front of others he appears fine. It always surprises me.... I watch him thinking is it me!
But, he is still my husband, we have been together for 45 years. I love him. I rarely see the man that made me smile and laugh. I don’t see the man that idolised me. But I know he is still in there. To date, apart from when he had sepsis, he has always known who I and the family are. That part of his brain is not affected. Whether that will change, who knows?
I recently had to stay in hospital and so my husband went into respite for two weeks. I was lost without him. I was on crutches.... I had no one to carry my cup of tea!! And he has yet to forgive me for, in his words, having him locked away in an asylum!
I need space which he doesn’t want to give me. He follows me round th house, it really irritates me as he makes me jump.
I find that total dependence on me very draining and hard.
I find it hard to not respond when he is aggressive.
But I still love him.
I don’t think he should go into care permanently until I just can’t cope anymore, if he didn’t know who I was or where he was, then it would be different.
He doesn’t want to go to day care I think because he is lost without me.
So, would I change anything? Apart from the obvious that dementia didn’t exist, no, I wouldn’t. I will only consider care or Carers when I can’t cope anymore. And when he doesn’t know who I am or where he is.
When that will be.... who knows?
Sending warm thoughts and love to you, B xx