Pleased to have found this board

[filchards]

Hello. I've posted elsewhere and then just found that there's this group too!

I have so much to say and ask, but just a quick one now:

My mother is in a nursing home. Terminal diagnosis. My Dad is doing great at keeping an eye, and liaising with staff but I am uneasy as I feel a bit in the dark about many things. I'm not sure the funding has been taken care of properly. I'm worried Mum isn't getting the right care. I can't talk to Dad about this as he would be offended and think I don't trust him.

Do I have the power to make enquiries, for example to the care home management? Would they be obliged to tell my Dad I've been asking?

I can't just drop in for a chat because I don't live near and not sure when I'll next be visiting.

I’m not sure you have the “power” to go into it, so you are dependent n the attitude of the care home management and their attitude to data protection.

when you say you are not sure the funding has been taken care of properly, what are your concerns?

The care home wouldn’t have anything to do with any LA contribution to funding, you’d need to talk to Social Services, and I doubt that they’d talk to you about your parents’ affairs without their permission.

Really it would be best to talk to your father, if you can frame it in a way that suggests Social Services have been pulling a fast one

As far as funding is concerned could you ask your dad if he would like you to be involved as well? Social Services/Local Authority don't always get it right so it might help to have someone else look over everything - a fresh pair of eyes and all that.

With the home I wouldn't see anything wrong with you ringing to talk to someone. I am my mum's next of kin and visit her every week as does my uncle, her brother in law. Although I am the one who is told if she has any needs - new glasses, clothes etc - when my uncle visits they tell him if there is any news or change in her such as when her rings were removed or that they have asked for a visit from a physio to help with her hand which is twisted and clenched. They have never asked if they can share updates with him but if they did I would say yes straight away because he would be one of the first people I would tell anyway.

My issue with the funding is that Dad is having to pay the accommodation element, and only getting funding for the nursing care. Whereas, when I looked into it (with info from people who know about these things) it seemed that as she has a terminal diagnosis, she should be getting everything paid for.

I know that this was sorted out while she was in hospital (from where she was discharged into the care home) and I passed on my info/research to Dad. But in his stress I think he didn't look at it properly or ask the right questions. It's unlike him (he's usually VERY thorough) but I can see that he was worried and stressed and that's when it's easier to just believe what you're told.

I already offered, some weeks ago, to take on some of the admin responsibility. And he accepted in principle but then went ahead and did his own thing anyway!

My issue with the funding is that Dad is having to pay the accommodation element, and only getting funding for the nursing care. Whereas, when I looked into it (with info from people who know about these things) it seemed that as she has a terminal diagnosis, she should be getting everything paid for. You’re talking about CHC. Normally there’s an extremely rigorous process to go through and most people don’t get it. But if the person is within 6months of death, there’s a fast track process which is less rigorous. It is however possible that she’s not entitled even with a terminal diagnosis.

You can appeal against a CHC decision or ask for a reassessment if the person’s condition has declined. There’s a company called Beacon which specialises in this area, you could ask for advice (which your father may pay attention to). You may be able to get the first hour free if you go via Age UK.

You also say you don’t think she’s getting the right care? What do you think the problem is? Care won’t be affected by funding method.

Finally got the message through to my Dad that the funding hadn't been handled properly (IMO) when Mum was discharged from hospital. The GP is starting the fast track application and Mum is being assessed in the coming week. She has obviously noticed that she's not going home and is not happy. Dad has been making enquiries about having her home and cared for there 24/7 but ...

Now, Dad seems to be good at getting the wrong end of the stick or overlooking things. But he reckons the NHS wouldn't / couldn't pay for nursing care of the level that she needs at home., for her to be cared for at home. I don't trust him on this as I don't know where he's heard it from and he's been wrong before.

I realise every case is different but a family friend (and thank god she now knows about my Mum) has nursed people at home right to end of life, and she reckons it could well be possible.

What kind of conditions / circumstances would make it impossible? She's not ill enough for hospital and not near enough the end for the hospice. Dad is happy with the nursing home because there are nurses on call. He thinks that's not possible at home. Does that mean the 24/7 live-in care you can get from an agency would be a carer but not a nurse. Is that why he's reluctant to go down that route?

She has a brain tumour and is diabetic. Loss of sight. Some incontinence. Very unsteady on her feet but can shuffle around with stick / frame.

The family home has a downstairs toilet. No bath anywhere (all showers) but could be adapted to have a seat. There's a stair lift. Plenty of room downstairs for a hospital bed. And spare room for a live-in carer.

I realise it's hard to generalise but I just need people to talk to. My Dad is keeping things from me and it's really not fair.

I found out from the family friend that Mum was given 6 months back in January when she got her diagnosis. Dad has NEVER told me that. Friend also said (in a very matter of fact way), that if the tumour compromises the bloody vessels, it'll be a quick and sudden final end. I had no idea. I'm weeping.

It depends what he means by care at home. No, you don't get a qualified nurse (well, you probably can if you're a millionaire!) but you can get up to 4 care visits a day if the need is there. We had relative home for final few weeks (also a brain tumour) - social services provided 2 carers 3x per day to do washing, catheter care and help with feeding. And organised a mixture of social services/Macmillan/hospice at home carers to stay awake overnight so we could sleep. None of those people were qualified nurses though. The overnight ones especially were often university students earning extra money by doing night shifts as a carer.

Then district nurse or the GP would visit some days to check pain management.

We had fully funded care under CHC but that was with a terminal diagnosis within weeks and person not at all mobile (not aware of surroundings and had to be hoisted in and out of bed).

Ah I see, thank you. I guess my Dad is absolutely terrified she'll be in pain and he'll be helpless. It seems like a lot to coordinate and he's unwilling to delegate any of the admin / organising to me. Shame as I think Mum wants to be at home.

It was all organised for us by a coordinator at social services who brought together Macmillan and the hospice at home. We didn't coordinate any of it - just had to be in to let an OT in to assess what equipment was needed and then take delivery of it. We were asked if one of us could do manual handling - if we'd said yes social services would only have sent one carer at a time, but we insisted on two as there was no guarantee one of us capable of manual handling would be around.

He was in hospital though and this was to come home. He'd never been in a care home.

Caring for someone terminally ill at home is a massive responsibility and if your dad isn't happy to do it you shouldn't force him.

Sorry to hear about your mum, do you have POA in place for both your parents? Financial and health? If not perhaps something to think about, we have it but still let parents try and sort their finances and health issues, stepping in when asked which is becoming more frequent.

@countrygirl99 did I say anywhere that I was forcing him? The whole point of my questions was to ascertain if paid others can do it for us to the extent that Dad would be happy with. He very much doesn't want/ can't do it himself but wants her at home if possible. I guess it's unlikely but I wanted to make sure we'd examined all options. Unfortunately the rest of the family have been shut out of decision making and access to information because Dad is choosy about what he shares.

Better also add that having someone terminally ill at home was incredibly intense, even with carers 3x per day and overnight. The person couldn't be left alone so someone was always with him, which meant things like shopping for food and cooking meals and getting a shower became quite difficult - it's a bit like having a newborn in a way but you can't bring them into the bathroom with you when you shower.

I came in every day to help out and it was like running normal life on a shift system.

@Effingmagicfairy no I don't. And this is something a friend has just recommended. Takes 20 weeks though. Should get it sorted for my Dad though.

I think my sister, who lives closest, has it but recently said she didn't actually want the responsibility so Dad asked if I would and I agreed. But nothing got done. This was a year ago when they were both well and was a hypothetical. It was more in relation to affairs after death that was on their minds. My sister had witnessed her son having to sort out her ex-husbands / his dad's affairs when he died suddenly and it freaked her out.

I know Dad is the one with most to lose as they've been together since they were 15 but he doesn't have a monopoly on the grief. Stubborn old bugger!

Sorry my post sounded a bit harsh I just meant it's really extremely hard even with good support. It's hard when the person in hospital wants to come home and their family can feel guilty into something & you & he may be influenced by the desire to make them happy beyond what you/he can manage. A few family members have been through this and all of them said they had underestimated how tough it I'd emotionally and practically.

Yeah. I can see the downsides. I just wish the care home wasn't so awful. Just seems so sad to end your days in a pokey room in a horrible place when you've worked hard all your life to have nice surroundings. Even hospital would be better as it is what it is. This pretence of a home / shit-hole nursing home is just dire. Like a 1970s Blackpool guest house crossed with a prison cell.

If the carehome is the problem would a move to another one be possible or even to another room in the same place.

Yes, maybe a move. The one she's in is very convenient as it's close to the house, so Dad can pop there easily. But it's not nice and I think she's noticed she's been there a couple of weeks now and isn't impressed!

It could be she wouldn't be impressed if she was in a five star hotel with a personal chef. Because it isn't home. Or it might makeall the difference, it's so hard to decide the right thing to do. MIL is very severely disabled following a stroke and needs 24 hour care. She can't speak, read or write. Is incontinent and paralysed. But FIL insisted on caring for her at home because, as far as he was concerned, no home was ever going to be good enough. It was only in the last few weeks when, dying of cancer, he was in and out of hospital that he relented despite constant pain and depression. We had so many distressing phone calls where he sobbed and threatened to kill himself but he wouldn't accept even respite admissions.
Also, often requests to "go home" don't really refer to home but a tome when life wasn't full of pain and the fear of dying so be aware that even a move back home might not make her happy.
I'm sorry you are in this impossible situation.

@filchards both you and your sister can be POA for each of your parents, POA stops when the person passes, then solicitor/executor takes over. It’s relatively simple to do, a solicitor will charge you over £1000 but we did ours on line and just paid application fee, it’s a bit long winded and you will need witnesses, and yes the application takes roughly 20 weeks. Definitely you should think about having POA for your dad, we did DFIL first due to health issues, then realised DMIL has never paid a bill in her life or sorted any banking out, we have just got hers in place now.