What if?

[Jennyc]

One of the questions I was a asked in a meeting with Carers' First, and also when I met up with someone from Social Services prior to a financial assessment next week, was "Are you prepared to go on looking after the person you look after?" Or something in those sort of terms. I answered that for the time being, yes.

What would happen if I said no? I really want to say no. I don't want to do this any more.

 

[sah]

Morning.

I looked after OH for over 8 years -and he finally went into full time care in June when I realised I could no longer keep him safe. I know now that I was in danger of total breakdown and am having counselling to help me sort my own future out. One of the things the counsellor tries to get me to accept is that I matter too....that my life is important. My health has been hit badly-I gave up my career of 40 years-and my children suffered badly.( OH is their stepfather. not their dad-although they love him as well)

OH is really happy and settled where he is and thinks he's lived there for years-I'm the one who struggles as I can now mourn the man I married-who has disappeared.

I suppose what I'm trying to say is that giving up caring 24/7 is not the end. I visit 3/4 times a week, on the days I don't work-go out on trips with him - and still have hugs, even though he's not sure who I am sometimes! If you're feeling that way now. it will only get harder as time goes on. Try to prepare; visit care facilities so you have some sort of choice - but don't go on so long that you end up in an a heap-the person you'd care for would end up in care anyway-and if it's a crisis move, you may not have any time to influence where they go.

It's the hardest thing I have ever done -but when I found myself considering suicide-which I never thought I would do -that was when I knew I had to go with the advice I was being given. Even his CPN told me it was time-and she'd fought to keep him at home for the whole 8 years. The guilt monkey is firmly on my back-but my logical head ( it appears sometimes!) tells me it was the best thing for him.

You do matter -and you would still be caring for your person. Ask for some options and see what they say?
Good luck.xxxx

 

[irismary]

Hi Jenny, whilst i am just about ok now i know i face hard decisions soon as its getting hard but of course the issue to some extent is funding. My husband would be self funding for a while but not for long so i will need to go through the hoops with social services. I will be visiting care homes soon for my mom who also has Alzheimer's so that will be a start i suppose. I see my life passing me by but the thought of a care home for him feels me with guilt. Its hard and with funding for adult social care the way it is social services will do all they can to keep people at home cared for by their family until there is a crisis.

 

[Delphie]

You can say no Jenny.

If you do, then the local authority/social services have to take over. They will determine the level of care needed and once finances have been assessed how this care will be funded.

So please know that your options range from being a full time hands on carer to having absolutely nothing to do with the situation, with all kinds of levels of involvement in between the two.

 

[Beate]

Jenny, no one can be forced to look after someone. Duty of care lies with the state. If you want to say no, you say no. You have to be honest, or everyone will just happily let you walk straight into carers breakdown.

 

[Casbow]

What if. Sah

Morning.

I looked after OH for over 8 years -and he finally went into full time care in June when I realised I could no longer keep him safe. I know now that I was in danger of total breakdown and am having counselling to help me sort my own future out. One of the things the counsellor tries to get me to accept is that I matter too....that my life is important. My health has been hit badly-I gave up my career of 40 years-and my children suffered badly.( OH is their stepfather. not their dad-although they love him as well)

OH is really happy and settled where he is and thinks he's lived there for years-I'm the one who struggles as I can now mourn the man I married-who has disappeared.

I suppose what I'm trying to say is that giving up caring 24/7 is not the end. I visit 3/4 times a week, on the days I don't work-go out on trips with him - and still have hugs, even though he's not sure who I am sometimes! If you're feeling that way now. it will only get harder as time goes on. Try to prepare; visit care facilities so you have some sort of choice - but don't go on so long that you end up in an a heap-the person you'd care for would end up in care anyway-and if it's a crisis move, you may not have any time to influence where they go.

It's the hardest thing I have ever done -but when I found myself considering suicide-which I never thought I would do -that was when I knew I had to go with the advice I was being given. Even his CPN told me it was time-and she'd fought to keep him at home for the whole 8 years. The guilt monkey is firmly on my back-but my logical head ( it appears sometimes!) tells me it was the best thing for him.

You do matter -and you would still be caring for your person. Ask for some options and see what they say?
Good luck.xxxx

You have really made me think about what I should do next. My husband was diagnosed 9 and a half years ago. I am now really struggling. He gets such changes in mood. This morning he wouldn't get out of bed. It took until 11,00 o clock for him to be presentable. I say this because tomorrow we have someone coming at 10.00 to assess him again, and an appointment at 1.30 for blood tests. I know the assessment would probably benefit us if they saw whats its like, but it is about our life in general, or lack of it. I sometimes wonder if he would be happier in a good care home where he did not have to feel like he should be doing something. He has voices in his head all the time and often says something that makes me know he is answering the voices. He did have a weeks respite but wasn't very good. How do you find a good home. How do you live with the guilt. I love him and want him here with me, but know I am slowing getting worn down.xx

 

[sah]

You have really made me think about what I should do next. My husband was diagnosed 9 and a half years ago. I am now really struggling. He gets such changes in mood. This morning he wouldn't get out of bed. It took until 11,00 o clock for him to be presentable. I say this because tomorrow we have someone coming at 10.00 to assess him again, and an appointment at 1.30 for blood tests. I know the assessment would probably benefit us if they saw whats its like, but it is about our life in general, or lack of it. I sometimes wonder if he would be happier in a good care home where he did not have to feel like he should be doing something. He has voices in his head all the time and often says something that makes me know he is answering the voices. He did have a weeks respite but wasn't very good. How do you find a good home. How do you live with the guilt. I love him and want him here with me, but know I am slowing getting worn down.xx

I started looking when the social worker painted a picture of what would happen if we hit crisis and he had to be placed immediately; then he could have been placed anywhere in the county -not good.

I was advised to spend time visiting-then try to find one that also offered day care. This I did ( some you wouldn't stick a dog in -so glad I did!) and managed to get day care started at a home that is dementia specialist- literally five minutes away.

Things accelerated more quickly than I expected after he had a mini stroke ( we think) a year ago. He went in for two week's respite - then I brought him home as I wasn't ready-mistake in hindsight. That lasted four months until he went in full time.

The guilt is tough - but the DOLs assessment said he needs 24 hour care which can only be provided in a residential setting. The staff keep telling me they don't know how I managed at home for so long-which helps a bit! It's accepting that he's quite happy in a way that the man I married ( only ten years ago) would never have been. That man has gone - and my main job is to ensure he's safe.

It's not easy - I would never pretend it is. But certainly -for us -there was no real alternative. We are self funding-for a few more months at least - which did make it easier. I shall be jumping through hoops re: funding around August! I don't think the guilt will ever truly go - but. last night, I did find talking to his picture( taken on honeymoon)and asking his advice strangely helped. I know the man I married would have hated to see the life I've had to lead for the past few years - we were so close and I know I was loved - and I love him totally.

I would suggest - if you haven't already-keeping a diary/log. Then you can hand it to the doctor/social worker( or email which I used to do). This also avoids having to talk about him in front of him-which is awful.

Hope you get the help you need - xxxx