Nursing home questions and a bad week!

[snowygirl]

Hi everybody
I've just come through a really awful week almost as hard as when we had to put my dad in a care home last year. Basically as I've mentioned before my mum has dementia too and has been living at home with carer support. Last Tues mum was taken into hospital with heart and kidney failure and overnight we feared that we were going to lose her. We didn't but since then shes been 'critical but stable' in hospital and is now on a dementia ward. We've been told its a balancing game with her organs but as she isn't going to get any better that she may have to go into a nursing home. This is a bit of a shock to us as we always thought that mum and dad would end up together in dad's care home but as mums mobility has been affected due to retaining so much fluid in her legs and her ulcers on both it seems a nursing home it will be. We are taking each day as it comes and I'm driving back and forth for 1.5 hrs every other day. She's very poorly but talking and beginning to be aggressive in the hospital a side of her that has never ever been seen before. Yesterday she sobbed with me and I sobbed back. She wanted dad...I pretended he had a bad stomach and couldn't see her. We haven't told dad and my question is should we? He still recognises her and vice versa but would a hospital visit by him be remembered? Is it worth it? Last time they went out together they kissed and cuddled at home time isn't it best to leave it like that? Also what happens next? Who will tell us when mum needs to leave hospital? Will SS be involved again like dad and as mum has over £23,000 in her own name and will be self funding from the start is there any grace time where we will be exempt from paying? As self funders how will we know what nursing homes offer the care mum needs for heart/kidney failure? This is so different from dad! and finally am I bad for wanting this to be all over and for my lovely mums organs to fail completely? She has no real quality of life now and after 5 years I just want part of the nightmare to be over but it feels like its just got much worse.

 

[Scotty9217]

Sorry to hear that you're having a rough time.
In my experience it might be better to tell your dad, whether he remembers that he's been told or whether he would remember a visit to the hospital is a difficult one, however, even if he forgets if they both had a good visit together then that's all that matters at that time if that makes sense? That said, it is always difficult to anticipate.

I think that you need to be having the conversation with the hospital regarding your mums discharge as they may have to do an assessment as with her medical conditions she may need nursing care. When the assessment is done they will advise regarding fees and finances.

Even as a self funder, every nursing home needs to complete a pre assessment to make sure that they can meet her medical needs. I always recommend visiting as many nursing homes as possible to get a good idea and also it is useful to visit a website called carehome.co.uk as relatives rate the homes independently and leave testimonials. When you visit just explain about Mum's medical conditions and see what they say. I don't know how you would feel about it but it may be that your Dad's nursing home could also cater for your Mum as well?

I hope this helps even if just a little, keep your head up, you are doing a really good job being a supportive daughter, even if you don't feel like it at the moment x

 

[theunknown]

Hi Snowy. I can't answer your questions but no, you're definitely not bad for wanting your mum's suffering to be over even if that means you losing her. You understand that your mum's life is not a life. I hope things work out in a way that helps you and your family.

 

[V-DiL]

Both and?

I know of couples that have different needs but can still both be in the same home (different bits) and therefore 'visit' regularly. Might be worth looking round and the website suggested is a good start. Some local authorities also have books that give a list of all the homes in their areas and some even have agencies that will do the search for you. Probably good to get a proper assessment of her needs as a starter and go from there. Good luck.

 

[Jessbow]

if she has a terminal condition, ask about CHC funding - no one will offer it, so ask.

Heart and kidney failure which cannot be cured/treated might well be enough to get funding.

I got it for mum with a heart condition

 

[snowygirl]

Thank you for your replies. I had a calltoday from the physio at the hospital who is also part of the discharge team. She asked lots of questions including what we thought was happening nxt and I had to say that I had no idea. They've asked me to go in earlier on my next visit so that I can be with my mum when they try to assess her mobility as she has been refusing to be touched by anyone. My mum is terminal in as much as we've been told that she wont get any better and that its a case of waiting for her kidneys or heart to basically give up. For now the doctors are doing a balancing act with her drugs. We did talk about her going home but I just cannot understand how someone with heart and kidney failure(its definitely failure not disease)and mobility problems could go home. I did mention mum being assessed for NHS continuing care before she left the hospital. The physio seemed surprised and said that mum probably wouldn't get it but I've read that to stand a chance of getting it the first assessment should be done in the hospital. Was I right? I felt a bit baulchy but I know we have no chance of getting anything for my dad and have already paid out a year's fees but with another parent facing nursing home fees I gave it a shot. It scares me really I'm not a really confident person but my mum and dad have paid into the system all their lives, have lived modestly and look what is happening to them! I'm so scared of running out of money eventually and having to move them when the LA have to get involved. we're still thinking about taking dad and thanks for your thoughts on that.

 

[Havemercy]

Thank you for your replies. I had a calltoday from the physio at the hospital who is also part of the discharge team. She asked lots of questions including what we thought was happening nxt and I had to say that I had no idea. They've asked me to go in earlier on my next visit so that I can be with my mum when they try to assess her mobility as she has been refusing to be touched by anyone. My mum is terminal in as much as we've been told that she wont get any better and that its a case of waiting for her kidneys or heart to basically give up. For now the doctors are doing a balancing act with her drugs. We did talk about her going home but I just cannot understand how someone with heart and kidney failure(its definitely failure not disease)and mobility problems could go home. I did mention mum being assessed for NHS continuing care before she left the hospital. The physio seemed surprised and said that mum probably wouldn't get it but I've read that to stand a chance of getting it the first assessment should be done in the hospital. Was I right? I felt a bit baulchy but I know we have no chance of getting anything for my dad and have already paid out a year's fees but with another parent facing nursing home fees I gave it a shot. It scares me really I'm not a really confident person but my mum and dad have paid into the system all their lives, have lived modestly and look what is happening to them! I'm so scared of running out of money eventually and having to move them when the LA have to get involved. we're still thinking about taking dad and thanks for your thoughts on that.

Hi Snowy girl - I wonder if Jessbow was talking about Fast Track CHC funding - this is awarded for a rapidly deteriorating condition that is entering a terminal phase. Sadly it sounds as if mum might qualify, but the paperwork needs to be completed by a senior doctor (if a Register or above) whilst in hospital and also a nurse who knows about mum's care. Usually a decision is made within a couple of days by the relevant Clinical Commissioning Group. It maybe that the physio wouldn't be involved, so she /he might not know about Fast Track Funding - so I would suggest asking a senior nurse on mum's ward - who should definitely know about. Best wishes to you and your family.

 

[AlsoConfused]

Plse go to CHC thread started by stanleypj - it's very helpful.

Sadly, it's highly probable YOU will need to be knowledgeable about CHC and the process to follow because the hospital's unlikely to know about it (or mention it if they do know).