Newbie reaching out

I’m 53 and caring for my 91 year old dad who has stage 5 kidney disease and won’t accept any help from anyone apart from myself and my daughters, which is all Ok but Im starting to struggle mentally. He lives alone and i’ve been furloughed for the last 4 months so i’ve been looking after him . i’ve now returned to work but two weeks ago he had a fall so went into hospital for a week which was a relief to be honest. he came out last week with a care plan which i was so happy about but he wasn’t happy and insulted a carer who reported him. now he refuses any carers so am back to square one. He plays games with me as he knows i’m soft and has cried wolf so many times. he just wants me to stay with him to listen to his monologues and he’s deaf so there’s no point in trying to talk as he can’t hear and is hard work. I’m so fed up. Tonight he was wants me to stay over as when i got here he was mega anxious . I haven’t much room at my house as i’ve got two grown up daughters there and no downstairs facilities but when lockdowns happened we tried to get him to come over but of course he didn’t want to . i think it’s time to approach a nursing home . can anyone advise or give their experiences . ? Linda

Hi Linds and welcome

There should be a needs assessment for your Dad…

Alternatively you could make tentative inquiries in your area…

Does you Dad have an alarm pendant.

You are not his little girl any more! The only power he has over you is the power you let him have. Stop being so available, answer phone on, set call times. Say I’ll be here at 4pm. If, inevitably, he wants you before that, don’t go. Say I told you I’ll be there at 4.
What care does he need? Need, not want?
What were the carers supposed to do? How many hours?
Is he getting Attendance Allowance?
Does he own or rent his home?
Have over £23,000 in savings?

Hi Linda and welcome

I understand how physically getting away from the person you care for, especially for a brief time (less guilt in my case), can be a relief but the stress that would accompany a hospitalisation was never worth it. And it seems like your dad’s manipulating you much more than my mum is me.

For what they’re worth, have you been in contact with your local social services? The woman I exchange emails with now is more approachable than others have been in the past and they can offer ideas you just might not have thought of.

Very best wishes, David

Well , things have move on … yesterday my dad had a huge anxiety attack so my daughter and I went to his , packed up his things and brought him here to live . He was confused and a bit unhappy about it but I think it’s the only option. If he went to see any nursing home to stay in, I can just imagine his reaction as he seems to not see that he’s 91! And in all seriousness he’d probably be thrown out !! My daughter prepared the dining room and sorted a bed , tv etc bless her. But now I feel really trapped and a bit depressed … is that normal ? I feel like I wont have any freedom anymore as he can’t be left alone because of his panic. The doctor has prescribed Lorazepam so hopefully that will take the edge off x

Ooh yes David… I’ve been in contact with Dad’s renal care social worker and she’s wonderful , we talk a lot. She knows what he’s like do i think she’s relieved. As are my two sisters that live distances away !! (but one isn’t that far if you get my drift!) :unamused:

You are going to regret this hasty action.

He NEEDS to go back home, and if he can’t manage there, into residential care.
Get onto Social Services and ask for EMERGENCY RESPITE OR EMERGENCY CARERS!

Hello Linda

Are your sisters uninvolved in your dad’s care because he only wants you and your daughters, or is it more their lack of interest? My sister lives next door but one and shows no interest at all in our mother.

Things were getting so intense for me I joined the forum. From the situation you’re describing it’s going to become even more difficult for you. Over the years I’ve got the impression that family and professionals alike, in my domestic case here at least, are very willing to do as little as possible in terms of help - assuming they can get away with it. Perhaps have another chat with your social worker and explain how worrying things are becoming for you.

Take care, David

It’s not up to him to say what happens to you, or say what you must do for him. He’s really intimidating you or bullying you into caring, and currently he has won. Please stick up for your own family, they don’t deserve this!

I know what you mean, he knows I’m a soft touch . but i feel i owe it to him as he’s always been a good dad and looked out for me . i’m the closest to him, logistically and emotionally. one sister lives in Bromley and her husband hates dad so she puts him first and the other night be lives in cornwall and can’t stand him either lol. But they’re obviously all interested in his money after he’s gone like a pair of bloody vultures grrrr!!!
I’ve been in touch with the hospice here and so think I’ll be getting care from them for him so that’s good . He’s really going downhill fast so part of me is glad we moved him here , at least feel like I’ve done what I can for him unlike the two vultures

Two questions- Has your father always been like this? You may need to think about this, as it may not have been so obvious when he was younger. Secondly at his age it is likely that there is cognitive decline, so if you put the two together it will impact on his behaviour.
You say that a care facility may not accept or keep him there. Please remember that there are different types of care and adult social care must come on board to assess and decide where might be most appropriate.
The guilt is something we all have in our caring roles, but in my professional capacity, I always try to address the quality of relationships. Yours is likely to break down further if you continue in this situation.

Just food for thought!

I think Im losing my mind … sorry for this… Dad was at mine last week but he started deteriorating. Very distressed and confused, wanting his keys to go home to his, sleeping all the time and feet swelling, no appetite. The hospice care nurses cane to clean him but he wouldn’t wake up so they said they’d come the next day. they called me 10 mins after they’d left to say they were worried and thought he should be admitted to the hospice so he went in. He was given 2 x blood transfusions and felt a bit better. I went to see dad today as earlier they called to say he wanted to go home to his house, and doesn’t want to go to a nursing home which they’d advised. I mentioned to him about this and he started getting distressed again saying family should care for him, i said we brought him to ours but he wasn’t happy and i said i have to work so I can’t be at his. he said the girls can do it … he begged for help . I said why hasn’t he been speaking to my other sister so i called her so he could speak to her and i needed support . He started begging her as he needs help and he needed her because she’s a nurse etc . He sounded so desperate. She said she won’t come up as she lives in Cornwall but he could go there to live and agreed saying he’d do anything . i spoke to her after and i was pretty upset but she said she’ll speak to my other sister etc . he was still upset and said he can’t stand being alone … i said we’d brought him to ours and he still wasn’t happy … i said he got more ill and the hospice got involved. he told me he’s seen a priest and confessed things to him he was sobbing . i said it was ok, nobody’s perfect etc . he wanted to tell one of his daughters as well but he didn’t go into details but i got the gist. he seemed to be calmer . when i left i called my sister back . she was pretty nasty saying it was expected that i’d take care of dad because of what’s been sorted in his will and the fact i’m getting the house i rent from dad bearing :frowning: :frowning: :frowning: :frowning: in mind my two sisters are loaded with paid for homes etc she said it’s not fair that she has to look after him, plus bring him down there. But i have looked after dad for years , every xmas with us, when he’s been ill and especially the last three years when he’s been deteriorating. sorting out cleaner, care etc and seeing him as much as possible. This is the last bit, the end of life which is more complicated to deal with and he wants her because she knows what she’s doing, he said he’d feel safer with her. she started bringing up problems with incontinence she’d have to deal with etc, doubting it all but she says she’ll do it. so she thinks i should be caring for him till the end and resents it that i can’t manage the end. We did bring dad here last week and settled him in but he went downhill fast and wanted to go home, asking for his keys getting annoyed and confused. so what next ? he refused to go into a nursing home but wants to be at his with one of us staying there which isn’t possible . so now he’ll probably to go to Cornwall but she’s being a bitch to me about the will etc it’s like she’s saying she won’t do it without a price . i’m sorry i’m wittering on but I’m freaking out

Talk to the hospice staff asap. Ask how long dad has left?
I don’t think it’s a good idea for him to go to Cornwall or you. He needs a TEAM of people caring for him. Hospital, nursing home, or home. You have done enough.

If only. i feel as though they’re not helping enough . They say he has mental capacity to decide what’s best for him but it’s not helping us with a difficult situation plus he’s very manipulative and strong willed. So we’re all over the place. I can’t sleep with worry.

King Lear comes to mind :blink: :blink: :blink:

He cannot force anyone else to care for him. Stand up for yourself. He’s a bully who is manipulative. What do you know about end of life care? Google signs of dying.
Forget about what he wants, think about what he NEEDS!

My sister’s kids thought she was mad to think she’d cope with dad in Cornwall so she called Saturday to say no way Jose! which is fine, she shouldn’t be involved. i saw dad later at the hospice and he asked what the plan is so i told him my sister can’t help. so he went nuts saying i’ve betrayed him because of all the help he’s given me, now i won’t care for him when he needs it. he completely turned on me saying … it’s you … you’re the bad one like he was looking at the devil . was horrible and it all got very heated and emotional. i call ed for help as i couldn’t stand it anymore and the nurses calmed things down and spoke about a care home being best and he agreed thank god. His erratic, confused behaviour and his incontinence is just too
much for me plus i work full time anyway. He’s just not my dad anymore . I felt awful last night and took an extra anti depressant and some co codamol for my shoulder pain and zonked out. I didn’t see him today and blocked all the family’s numbers as needed time to myself … slept most of it . will see what this week brings but hoping tomorrow the hospice will call about arrangements for a care home

I’m sorry dad was so horrible to you, but hospital staff have now seen his nasty side and will understand why you cannot care for him any more. Your caring days are over, time to rest, look after yourself now. Good idea to not speak to anyone in the family today. We are here for you. Rest, not housework today, go for a walk, have a coffee. I used to say the world will have to manage without me today!

Thank you Bowlingbun … deep breaths for today xx

Well , dad went back home to his for a while with hospice care at home … his foot became gangrenous so he went back into hospital and he had an angioplasty in his foot as there was a vascular problem. Stayed for a week, back home he went with hospice care 4 x a day and I visited as much as possible. He would phone on the night in a panic and would call the paramedics as he was in a state . Hospice carers were so lovely . But eventually all got too much and I managed to get him into a nursing home nearby to me a few weeks ago. All seemed fine and going well, such a relief. obviously difficult with covid guidelines . He went into the lounge for the first time on Monday and he realised the other residents have dementia and are very frail. He has no concept that he’s 91 and really ill so he now says the place is not for him and wants me to take him out. He’s even called his dog walker friend to get into his house and get solicitors paperwork! When he calls he makes it sound like he’s neglected. He has a lovely room, it’s like a hotel , has his tv, nice large picture window , nice view . but it’s still not enough , he wants people round him constantly listening to his monologues. He’s begging me to get him out , thinks it’s a prison and says he’s been a good father to me and this is how I repay him at the end of his life . What am I meant to do .? I was with him at his the week before he went into the home , and he just would pee into his bottle in front of me etc and be miserable , moaning , etc. He says he still has years ahead and is too young to die. It’s so head messing to think you end up his age and still not ready to go and panicking, clinging on . I always assumed you’d be at peace and let go