How life has changed

[NannaHVO]

OH was diagnosed with dementia in late November 2019, although the signs had been there for probably a couple of years before that at least. He found it hard to accept the diagnosis and was very secretive about it for some months. He has deteriorated very quickly and we found it necessary to find him respite care, just to give me a break. Family are very supportive, but he is very demanding and controlling, especially with me. The happy, smiling man I have been married to for over 50 years has vanished and been replaced most of the time by this grumpy, sarcastic, miserable person who looks just like him; this 'version' has been pacing the floor for most of the afternoon every day, hiding keys and correspondence as a 'punishment' if he doesn't get the answer he wants and refusing to wash himself or change his clothes There are occasional flashes of the man I married, but are few and far between. He is currently in respite care, and I am relieved that I do not have the 24/7 care responsibility at least for a time. I am struggling with my emotions - he is feeling scared and alone where he is currently living and probably doesn't understand a lot of what is going on around him, and I feel guilty in some ways that this is what I am putting him through. Is this a common reaction?

 

[Old Flopsy]

Hi @NannaHVO - yes it is very common.

My OH of 56 years went into a care home this week straight from hospital- it will be permanent- even typing those words makes me feel so wretched. But I have reached breaking point and I truly believe, deep down, that it will be for the best.

He needs more than I can give,ie 24/7 although he doesn't think he does. He arrived there on Wednesday and I ring the home as often as I like- he was furious when he arrived and wanted to be taken home.

He refused to eat, wouldn't accept personal care, and refused to wash or change his clothes and incontinence wear. The carers are angels trying every which way to persuade him to eat, to socialise, etc and on day 3 he is now eating, playing dominoes, chatting. They tempted him with the promise of a glass of wine and it worked!

Meantime I have been distraught and so weepy- constantly on edge, worrying that he will wonder why I did this, not eating much, not sleeping much- getting up at the crack of dawn to watch TV.

It is so hard.

 

[Thethirdmrsc]

Hi @NannaHVO it was the personality change that I wasn’t expecting to happen. My independent, clean, self employed husband has turned into a clingy, vicious, (at times)sarcastic (more than), dirty man, who cannot understand simple instructions. We haven’t done respite yet, but I know that I will feel awful. We talk about his head sometimes, and it’s a dark scary place that I cannot imagine.

 

[NannaHVO]

Hi @NannaHVO - yes it is very common.

My OH of 56 years went into a care home this week straight from hospital- it will be permanent- even typing those words makes me feel so wretched. But I have reached breaking point and I truly believe, deep down, that it will be for the best.

He needs more than I can give,ie 24/7 although he doesn't think he does. He arrived there on Wednesday and I ring the home as often as I like- he was furious when he arrived and wanted to be taken home.

He refused to eat, wouldn't accept personal care, and refused to wash or change his clothes and incontinence wear. The carers are angels trying every which way to persuade him to eat, to socialise, etc and on day 3 he is now eating, playing dominoes, chatting. They tempted him with the promise of a glass of wine and it worked!

Meantime I have been distraught and so weepy- constantly on edge, worrying that he will wonder why I did this, not eating much, not sleeping much- getting up at the crack of dawn to watch TV.

It is so hard.

Thank you so much for this reply. I know that the decision is the best for both of us, but still have days when I feel rotten about how life has turned out. OH has been uncooperative with the care staff; refuses to eat or just picks at a meal, refuses personal care, a shower and stays in bed in his room all day if he gets his way. The staff are doing whatever they can to gain his confidence and trust, but he trusts no-one, at times not even me. Has your OH continued to settle, I do hope so. I haven't been weepy, but can't concentrate on anything for very long, and know the watching TV at night scenario only too well. It is hard. Hope it will get easier for us both and our OH.

 

[Old Flopsy]

@NannaHVO My OH is beginning to settle- so I am told by the carers.

He lets them give him a bath- this was after falling in the shower and an overnight hospital check up which did cause confusion and much worry for me, but no more showers now- just a leisurely bath with help.

This week when I visited he had different trousers and jumper on at last.

He still eats very little.

They can get him to co=operate with personal care by promising him a tiny bottle of wine in the evening.

I haven't picked a book up for over a month and my crochet is ignored- I have lost any interest in previuos hobbies and spend hours thinking and watching mindless TV. You are not on your own in that!

 

[northumbrian_k]

Hi both, it is easy to underestimate the devastating effect it can have on you when your partner goes into permanent care or respite. My wife had several short periods of respite care in the run up to her permanent placement in a care home. It wasn't planned that way as the respite was meant to be just that: a time for her to be safe and well looked after while I had the opportunity to do something for myself after years of ever-more demanding care requirements. It was during one of those respite stays that I seriously started to consider the possibility of a care home for her. I took the time to look around a few places and found one that I liked and, more importantly, where I thought she would be well cared for and would fit in. I agreed to send her there for a 'trial period'.

By the time that I got home after dropping her off I was almost certain that there would be no going back. It wasn't easy, and there were many times when I felt lonely, guilty, ashamed and emotional. The support that I got from friends on this site was a boon during those times of doubt.

Now, almost 2 years on, I can look at us and say without any doubt that both of our lives have been improved since she has been properly cared for in a way that I was no longer able to do. She is more settled and contented than I would have thought possible. I miss her, of course, but as the person she was before dementia took hold. Some of that personality - which once seemed lost for ever - still comes through when I visit. Moving to a care home was the best thing that could have happened to her and I can say for certain that I would do the same again.