Hi everyone,
This is my first post but I have been reading threads online for a while and have found them so helpful.
I just want to share what’s been happening with me as I feel so alone and overwhelmed by the events of the last 16 months.
To keep it brief, I experienced a cancer relapse in April last year and was in active treatment for seven months as the chemotherapy kept failing. Meanwhile, my dad who is 81 and lives by himself in a 3rd story flat in a remote part of north Wales, has been deteriorating both cognitively and physically. I am an only child, couldn’t travel and relied on a cousin and neighbours to support my dad, but it was clear that he was just getting worse. It was the middle of covid and we weren’t getting anywhere with his gp in terms of extra support and he wasn’t cooperating with getting a further care assessment, though he was already registered for attendance allowance. I tried to persuade him to give me - or someone- power of attorney but he refused point blank. Then in April this year he fell at home and the neighbour found him. Goodness knows how long he’s been lying there because by this stage he’d clearly become very confused in his own thinking. So he was taking too hospital where he’s been for the last two and a half months. He has osteoporosis, fractured spine, pressure sores, some sort of undiagnosed movement disorder (possibly Parkinson’s). He’s been assessed twice by the CPN who noted that he will need a memory clinic appointment after discharge and that she is unsure if he has the capacity to make decisions. I don’t think he has based on my twice daily phone calls with him. He seems to think he’s in a hotel and thinks he’s based in the house he lived in 30 years ago. Some days are better than others with his memory. The hospital started pushing hard for him to be discharged as they really need the bed. A social worker is involved and she’s been trying to find him a care home near where he lives as the OT has said it’s not safe for him to go back to his flat. So last Wednesday dad told me that someone had been to see him and given him information about costs of moving into a care home etc and he had no clue what to do with this information. I’ve been in touch with his social worker and she didn’t know about it either. Apparently the hospital took the initiative and arranged a room in the care home near them. That’s understandable but I really feel they should have kept me informed and I’m worried that he’s going to be asked to sign papers that he doesn’t understand. And as I don’t have power of attorney there’s little I can do, especially as he’s yet to have a formal dementia diagnosis. So to top it all off I had a phone call from the hospital yesterday to tell me that he’s going to be moved to the care home today. I feel absolutely terrible. I haven’t seen him for over a year now, even though I’ve been calling him every day. I’m crying my eyes out right now as he’s going to have to do this move by himself without any support. I know logically there’s nothing I could have done when my own health was so poor but I still feel full of guilt and that I’ve let him down.
I don’t expect any of you to be able to suggest anything, but I just needed a place to share my feelings. I’m divorced and live by myself so have felt very lonely this past year.
This forum has helped me realise that there are others who have struggled with their parents care, and that has been some comfort.
Thank you for reading.
Hello Jane, this must be such a distressing time for you and your Dad. To be honest, with your health as it is, I don’t suppose there is a lot you could do anyway just now.
Even though you are not POA you are still his next of kin and the home and social services need to make sure they have a record of this. Does he own his flat or is it Social housing? At some point it will need to be cleared out so you will need help with that.
Maybe this home will be just right for your Dad and you can get to see him soon. I hope so anyway.
Take care. Xx
Thank you for replying Penny, I really appreciate your kind words.
Yes, he does own his own home and the social worker has explained that this will need to be sold to pay for his care. I feel really overwhelmed at the thought of clearing out the flat. The neighbour says it’s got into quite a mess and I know I’m going to have to go up there at some point to sort out his paperwork - bank accounts etc as well as arranging the sale of the flat and his car. The social worker says we have 12 weeks or so to get on top of that. She’s really nice but is so overwhelmed with work herself that I don’t think our case is a priority for her. She mentioned the county was in crisis with cases like this, where families have been hanging on by a thread to get through covid and now everyone wants help.
Anyway thanks again for listening xx
Good morning and welcome to the forum Jane
Social services can be poor with helping out at the best of times but with the virus they seem to have become almost invisible. Three months ago we were promised help here as, and this is completely my fault, the place has become a mess. No help has arrived yet. But with that 12 week time frame your social worker has given you I can understand how overwhelmed you must feel.
I wonder if Citizens Advice might be some help? I know they’re great with advice regarding benefits but it might be worth contacting them and explaining your situation in full.
Best wishes, David
Thanks David,
Good idea, I’ll try CAB and see what they suggest. I’m not sure I’ve got the energy to get on top of this in 12 weeks. I have many questions too about my authority to manage his financial affairs without POA. I don’t mind doing it as next of kin but as he hasn’t had his formal dementia diagnosis yet I guess he’s still going to have to be the one who signs documents, even though he doesn’t understand what’s going on. It all seems very harsh, though I appreciate the difficult context that the hospital and social services are operating in at the moment.
Thanks again for your post and the welcome to the forum.
Jane
Social Services are wrong. You don’t just have 12 weeks!!! Google Charging for Residential Care to start with. Have SSD done a formal financial assessment? No. So they have to pay until things are sorted!!!
Thanks BB - it’s all such a big mess … feels like social services are sinking in our area. I’ll google as suggested.
If he is being moved when no one has POA have they held a formal Best Interests meeting?
Done an NHS Continuing Healthcare Assessment?
If he qualified for CHC, his care would be FREE! However, it’s a postcode lottery!
How old are you? Do you own or rent your own home?
Is dad claiming Attendance Allowance?
Does dad have a mortgage?
Sorry about all the questions, but your answers will narrow down the options. Social Services should have Client Affairs Team who could take over sorting everything out if you can’t, but don’t go down this road yet.
One thing you can do easily is become dad’s DWP appointee, allowing you to manage his current benefits.
Consider asking dad’s bank to temporarily lock his accounts.
Hi BB,
As far as I know there hasn’t been a best interests meeting. And I didn’t even know what CHC was until you told me below!
I’m 54 and own my own home (mortgage still to pay). Dad gets attendance allowance. Owns his home (no mortgage). I’ll look into becoming dads DWP appointee. I’ll also check with the bank if I can freeze his account though as we still haven’t had the formal medical diagnosis of dementia (because of conditions described above) I’m not sure if they’ll let me do that.
Thanks so much for the really practical advice - I appreciate it so much!!!
Jane x
Happy to help.
If you tell the bank you’ve been told he’s not fit to go home, suspected dementia, they should understand.
I reclaimed £8,000 from Hampshire on behalf of mum, when they didn’t apply the rules properly.
My top pieces of advice right now would be
- DON’T SIGN ANYTHING!
- Ask for them to email everything to you - refuse to engage in long phone calls. They may say something that they deny later.
It’s already clear from your posts that the LA is trying to intimidate you into doing things.
Your own financial situtation is irrelevant. Ignore any comments about “top ups”. Unlawful!
Any assessment must be done solely on dad’s own money and assets.
Feel free to ask the forum anything you like, it’s a huge learning curve.
It’s also incredibly draining, extra so in your own circumstances.
Thanks BB,
Yes, all very draining indeed. Turns out dad’s new room has no toilet, tv doesn’t work and only one hot meal a day.
So many things to sort out …
Will post with other questions as and when. Browsing through the forum is very helpful x
Long term, what do you want to happen now?
Would it be better if he was moved to a care home near you AFTER they’ve worked out what is really wrong with him, i.e. Parkinsons etc.?
Did they do a brain scan to rule out dementia?
I think I’d like to have him moved to a care home nearer me. Asked the care home about the Parkinson’s tests and they said they didn’t know anything about that and it wasn’t in his notes! So been trying to get in touch with his GP to chase that. The CPN is going to visit him tomorrow to see about the memory clinic and I told the care home to check with her about the Parkinson’s. He had a brain scan back at the main hospital in April when he fell and doctors said there was no sign of ‘new’ deterioration, though noted how confused he was.
If there was no sign of “new” deterioration, surely that suggests that there was some identified previously?
There is such a thing as Parkinson’s dementia.
Just popping in and out.
Thanks Penny and BB,
We have a date for 3rd August at the memory clinic so hopefully we’ll get some answers now. In the meantime he’s been put in isolation for 14 days in the care home because he moved in from a hospital. He’s not at all happy complains about the isolation and loneliness - it’s all very sad …
It really is terrible Jane about care home residents having to isolate when they come from hospital. I am sure your Dad is feeling lonely and isolated. A few of my friends parents have been in this position and really struggled. It’s actually like being in prison.
One friend’s Mum isolated for 14 days when she moved into a care home. She spent one day after that getting to know people, then had a fall and they insisted she should go to hospital. She then had to spend another 14 days in isolation and was distraught.
How sad for your friend’s mum - practically 28 days in isolation! And it’s all happening just at a time when they’re so vulnerable, going through a huge change and really need some care and personal attention. Heartbreaking x
Hello Jane,
I have just joined the forum and read your post. I really hope the situation has improved. It must have been an awful time for you especially as you were ill yourself.
In the replies there was information, eg re. DWP appointees. My mother in law who has severe dementia has been living with us for 18months and I had never heard about it.
I really do hope you don’t still feel terrible.
Stay strong. You both need to get through this