Gone into a nursing home ..... now what?

[Annypurple]

My OH had a diagnosis 4 years ago and since has declined steadily until last year when decline became rapid and by May I was besides myself with exhaustion and found it was unsafe for him in our home, he has small brain bleeds as a result of the disease causing dementia. Luckily I found a nursing home nearby. It feels very lonely without him, I feel guilty and strangely drawn to thinking about him and needing to visit for ME, not so much for him as he's in his own world. Although he sometimes says he's not happy and I can see he doesn't like being in the home. Doesn't like not being in his own home. Although he can't articulate this. I don't mention home. Anyway, this feels like another torture. It's bad enough having to cope with all that I have until this point, but there's no real respite now either. It is such a long and lonely road.

He's estranged from all his family and now I am from most of mine. Friends have stepped back and gradually we have had to manage more and more on our own. On my own. How long will this last? I don' know. Will it take all our savings and mean I have to sell the house? I hope not. Luckily I have LPA so have separated our finances so at least, have my own. It's very hard to lose control and at the same time, a huge relief.

How to cope? Anyone else have this experience?

 

[Liepy]

My mum is in a nursing home. Has been for 3 years. Lost my dad 10 months ago. It’s only me and my hubby and we have no children and no family and we are her only visitors. There are times I feel very alone. You won’t lose the house, it can’t be taken into account whilst you are living there. You are doing right by separating out the financial side of things. My biggest fear is being left alone in my older years. Chin up. Linda x

 

[canary]

When you have been a full time carer it takes a while to adjust to not being one, even though there are still things organise. Previously your life was filled with things to do and the problem was not having enough time to do them, so you dont notice that all social stuff gets jettisoned - now it all seems empty. Try picking up old threads, getting in touch with old friends, doing things to make new ones.

Dont worry about the house - all the while you are living in it it will be disregarded by the Local Authority when he assessed for financial help after your husbands money (not yours) has run down.

 

[LizK]

I could have written your post myself as it's so like our situation. My husband has been in a secure nursing home for 18 months and hardly a day goes by without him asking to go home. Last week he said "I hate it here". Often he hasn't the words and will say "you and me" or "how long". It makes a bad situation so much harder to take. Added to that is the £4749/month I have to find...... Sometimes life doesn't seem worth living.

Liz

 

[Annypurple]

Oh thanks for your reply Liz - I'm sorry to hear about your OH it must be sooooo hard with him asking ( demanding) to be taken home. As it is with me. Only people who know what it's like can even begin to know the difficulty of this. There is life for us - I hope! Having to find care home money is huge, but hope you have LPA and separated your own money and spending only his on his care, and not yours.

Hope you are ok. Ann

 

[Annypurple]

My mum is in a nursing home. Has been for 3 years. Lost my dad 10 months ago. It’s only me and my hubby and we have no children and no family and we are her only visitors. There are times I feel very alone. You won’t lose the house, it can’t be taken into account whilst you are living there. You are doing right by separating out the financial side of things. My biggest fear is being left alone in my older years. Chin up. Linda x

Thanks for your reply Liepy, sorry you're in this situation - it is a very lonesome journey. I agree, I worry about being as I'll as my OH is and being on my own. Keep strong!

 

[Annypurple]

When you have been a full time carer it takes a while to adjust to not being one, even though there are still things organise. Previously your life was filled with things to do and the problem was not having enough time to do them, so you dont notice that all social stuff gets jettisoned - now it all seems empty. Try picking up old threads, getting in touch with old friends, doing things to make new ones.

Dont worry about the house - all the while you are living in it it will be disregarded by the Local Authority when he assessed for financial help after your husbands money (not yours) has run down.

Thanks for your reply Canary - thanks too for your sensible advice. I am picking up the threads ..... the house will be ok for a bit but the care home costs are higher than the local authority will pay (they agree a sum they will pay to care homes) so I will have to find the difference to top-up on fees.

 

[irismary]

Annypurple I too could have written your post. My husband went into care 3 months ago having been diagnosed 3 years ago but declining quickly this year to the point I couldn't cope. He is close so I get a daily fix and fortunately he seems content. But the house is too big, too quiet, too empty, too lonely. My head is full of did I do the right thing, too soon perhaps, what do I do now. I suppose take it one day at a time, take opportunity to go out when they present themselves, pick up the threads of my previous life and its not going to happen over night. I wish you all the best, take care of yourself, big hug.

 

[June 1947]

My OH had a diagnosis 4 years ago and since has declined steadily until last year when decline became rapid and by May I was besides myself with exhaustion and found it was unsafe for him in our home, he has small brain bleeds as a result of the disease causing dementia. Luckily I found a nursing home nearby. It feels very lonely without him, I feel guilty and strangely drawn to thinking about him and needing to visit for ME, not so much for him as he's in his own world. Although he sometimes says he's not happy and I can see he doesn't like being in the home. Doesn't like not being in his own home. Although he can't articulate this. I don't mention home. Anyway, this feels like another torture. It's bad enough having to cope with all that I have until this point, but there's no real respite now either. It is such a long and lonely road.

He's estranged from all his family and now I am from most of mine. Friends have stepped back and gradually we have had to manage more and more on our own. On my own. How long will this last? I don' know. Will it take all our savings and mean I have to sell the house? I hope not. Luckily I have LPA so have separated our finances so at least, have my own. It's very hard to lose control and at the same time, a huge relief.

How to cope? Anyone else have this experience?

 

[canary]

the house will be ok for a bit but the care home costs are higher than the local authority will pay (they agree a sum they will pay to care homes) so I will have to find the difference to top-up on fees.

Um, does this mean that you are thinking of selling the house to pay for top-up fees ? I do hope not and I have just misunderstood. If this is actually true, please be aware that as soon as you sell the house (assuming it is owned jointly/tenants in common) then his share will become available for funding the fees and LA payment will cease until it is down to £2,4000 again. So you would only have your share to buy somewhere else. How long would his money last? Would you still have the finances for top-up fees when the money ran out? I really do hope that this is not what you were thinking of doing.