live in care or not

[nestle]

I'm new to talking point, my partner was diagnosed with LBD 3 years ago. I've supported him pretty much alone
Its been a really difficult 3 years on so many levels, we live almost 200 miles from either of our families, his kids are only just getting there heads out of the sand. His son has treated me abominably when it came to POA. I don't have POA for my partner. So, for last the year I've been doing an 800 mile round trip every 6 weeks so that he can see his family and I can have a break. I an a prisoner of his illness like a caged bird that cannot fly.
I'm emotionally exhausted and think the current arrangements will not be sustainable as his illness progress'
so I thought about live in care as an option but perhaps this is my way of saying I need more help, that I'm struggling, that I'm trying to delay the day when he will have to move into a care home..... an almost unbearable thought at the moment. I've talked to the kids but their response only confirms they haven't a clue .
I arranged a sitter for him to free me up but he couldn't understand the need for it and it was very distressing.
My Nephew was in need of emergency accommodation and stayed for a few months but this led to suspicion and paranoia, my partner thinking I was having an affair and more recently a trusted friend was going to help out by taking him to an appointment but he really could not handle this at all. It was very distressing for us both.
So, I'm drawing the conclusion that he wouldn't be able to handle a live in carer at all no matter how it was wrapped up. If you got this far thank you for reading .
Does any one else have experience of this or can make any comment ?

 

[margherita]

Hi @nestle,
if , as you say,
"I'm drawing the conclusion that he wouldn't be able to handle a live in carer at all no matter how it was wrapped up",
the only option left is a care home.
You sound tired and exasperated , which I understand because my situation is similar to yours.

 

[canary]

Im thinking the same as margherita.

I am assuming that his son has POA. Is he on board with his dad needing more care than you can provide? If not there may be problems with financing the care. Are you in UK? Would he be self-funding?

 

[nestle]

Hi @nestle,
if , as you say,
"I'm drawing the conclusion that he wouldn't be able to handle a live in carer at all no matter how it was wrapped up",
the only option left is a care home.
You sound tired and exasperated , which I understand because my situation is similar to yours.

I think you are probably right . I'm thinking of making a start on exploring care homes in my local area .I've been reading some of the related threads and I think that's been useful. Think exploring TP is long overdue for me!
I am very tiered its true and interesting that your situation is similar to mine I had a feeling I couldn't /wouldn't be the only one. I hope you are managing to take care of yourself but it's hard isn't it ? Thank you for taking time to reply.

 

[nestle]

Im thinking the same as margherita.

I am assuming that his son has POA. Is he on board with his dad needing more care than you can provide? If not there may be problems with financing the care. Are you in UK? Would he be self-funding?

Originally I had joint POA with his son but it became completely unworkable , I took legal advice and resigned which deprived his son of POA .Though not convenient it is fortunate that his daughters now have POA, They appreciate I need more help but there's a long way to go yet on them coming to terms with the expense of any care required, suggesting we might find somebody suitable privately and that I might interview such person as it would be cheaper than using an agency. I flatly refused and said 'No' which was a very big thing for me to do.
I don't have much faith in them helping me to sort this out without a struggle.

 

[nestle]

it is horrible - I am so sorry - you have come to the right place to vent. Like canary I think you need to get more information about your circumstances and advice. If you are in the UK ask your GP for details of the local carers' centre, social services and whether there is a charity providing support for carers of of people with dementia. Contact the Alzheimers Society via this website. These organisations will not be able to provide the extra care your husband needs but they will be able to offer some help about options, organisations, benefits etc. It is a longish road and you have to be assertive (especially with family) but once you have care in place (we have day care from paid companions) it is very worthwhile for both of you. I firmly believe that nobody can do this alone long-term 24/7. I speak from experience.

And I have now visited lots of wonderful care homes - they are a very good option when the time is right. The issue is cost - so getting advice is again useful.

Thank you for taking time to reply. I find your words reassuring. finding my way to talking point is long overdue I think.

 

[Wishful]

My husband has LBD and it's certainly not an easy dementia. Have you asked for a carer's assessment to see what help and support you can get via social services. I don't know your partner's finances but it could be that he gets some financial aid for carers.

I prefer to go through an agency as, although initially it may be dearer, you won't be responsible for their tax, NI, pension deduction. There's things like getting CRB checks. You would need three carers and what happens if one goes sick, on holiday or leaves.

No matter what you decide get help, the sooner the better. You need to take care of yourself x