Mum in hospital - advice needed

downshifter98

Apologies if this is the wrong forum.

Long story short; Mum is severely disabled (bed bound, incontinent, feeding required) due to very long term rheumatoid arthritis. Dad is her main carer and supported by 4 visits daily by council funded carers. She was admitted to hospital 10 days ago with a bad chest infection and very low blood pressure and we were warned she would not pull through but although very frail she is 'only' 71 and has rallied around enough for the ward sister to suggest she comes home, the same sister has also suggested that nursing care is probably required and do we (Dad) want to start applying for continuing healthcare which unsurprisingly both Mum and Dad have refused. Now in addition to this Mum also suffers from bed sores and is visited 3 times weekly, when at home, to have them treated - trouble is they have worsened in hospital (although hospital blames district nurses) and Mum and Dad are worried that nursing care will be imposed on them (as their son I can see that we are getting close to this) so I'm wondering what happens next; if care is needed will Dad have any say in where Mum goes? Her care at home is currently council funded and Dad has little savings (they jointly own their modest property) so I guess the bulk of nursing care would also be covered? I've read a bit about nhs funded care and Mum would seem to be a prime candidate but I'm wondering how this process works. Any general advice greatly appreciated.

Morglin

When my mum had to go into a home, and they did the financial assessment, they didn't include their house, because my dad is still alive,but they added up their savings (anything under about £23 thousand is ignored), and it worked out that, all bar a few pounds, she had to pay £100 per week towards her care - this was made up of her pensions and she had to claim some PC to use as well.

Dad kept all his pensions etc., and was treated as single for his PC and got council tax discount.

Mum lost her Attendance Allowance, because she was publicly funded in there.

If, after NHS assessment they decide she is poorly enough to be entitled to be entitled to full NHS funding, (virtually impossible to get nowadays), as opposed to Social Services funding, she may pay less.

Social Services discussed with us the different homes, and we found a good one catering for Dementia and being wheelchair bound. It was also local for dad and the family to visit.

They cared for her until she died, and although my dad was bereft without her (still is), he realised at his age he couldn't cope any more (85), so we had no choice, and it did mean she was well cared for 24/7.


Lin

downshifter98

Thanks Morglin. Dad is 77 and in good health and generally copes but it seems to be the bedsores that are causing the most issues; Mum needs 'turning' every couple of hours and needs 2 people to do this so nights at home will be a problem. She nearly came home today but now waiting for the hospital to liaise with social services re her overall care. I understand that NHS funding is pretty rare so won't be expecting it but Dad fretting re the overall cost and nursing home location (he would sell the house to be close to Mum). Fingers crossed she will be allowed home but situation changeable, of course.

margaretclare

For heaven's sake. This is a very ill woman who, in addition to everything else, has bedsores and needs turning every 2 hours. And it is proposed to send her home. To be turned every 2 hours by - whom?

I am desperately sorry for your parents, both of them, and for you too. I see this from my perspective as well - your mum is 7 years younger than me!!!

This poor woman needs nursing care and, I would submit, this cannot be done in the home. With the best will in the world. I was a district nurse/community midwife (back in the 1970s) and I could not have done this.

Savvy_Sue

downshifter98 wrote: »

the same sister has also suggested that nursing care is probably required and do we (Dad) want to start applying for continuing healthcare which unsurprisingly both Mum and Dad have refused.

Why???? Was this a funding assessment? Care can be paid for at home as well as in a home (although take note of the need for turning!) and although it's a battle to get it, your mum clearly has healthcare needs which should attract funding!

downshifter98

Hi Margaretclare.

Thanks for your plain speaking advice - it's much appreciated.

Mum is desperately ill - mentally her disabilities have beaten her and she is just scared of everything now; her ability to speak has also been severely restricted (she is riddled with the RA and has had it since mid-30's) so you can imagine the whole situation is fraught plus Mum and Dad are resisting care and pretty difficult to deal with (Dad is probably somewhat in denial). Added to this I assume that it will be cheaper for social services to keep Mum at home. Meanwhile the nurses on the ward are turning her during the day but not through the night so I don't see the bedsores improving anytime soon....

margaretclare

It will be cheaper for SS to keep her at home - you say. Well, you may be right, but IMHO what SS want is irrelevant. As I said, your Mum is an ill woman who needs skilled nursing care.

In the modern world - different from when I was hands-on with these things - your Mum should be on a pressure mattress to relieve/prevent bed-sores. No good blaming the district nurses. 3 x week visits? What can they do in that time, and what happens all the rest of the time? She's incontinent, so impossible to keep this area clean and dry. As fast as you've cleaned and dressed the sores, off we go again.

A predisposing factor to bed-sores is dehydration, and older people can be their own worst enemies here. They think if they don't drink they won't have to pee. It doesn't work like that.

downshifter98

Savvy_Sue wrote: »

Why???? Was this a funding assessment? Care can be paid for at home as well as in a home (although take note of the need for turning!) and although it's a battle to get it, your mum clearly has healthcare needs which should attract funding!

They did a preliminary assessment 1 week ago but told Dad (this week) they would only do a full ('time consuming') application if its what he wanted and, of course, Mum and Dad said 'no thank you'. They are currently getting the care visits at home fully funded by social services. I get the impression that the hospital are now in a quandary as the bedsores are not improving but they are desperate to move Mum along...

margaretclare

They really do need the full assessment.

downshifter98

margaretclare wrote: »

It will be cheaper for SS to keep her at home - you say. Well, you may be right, but IMHO what SS want is irrelevant. As I said, your Mum is an ill woman who needs skilled nursing care.

In the modern world - different from when I was hands-on with these things - your Mum should be on a pressure mattress to relieve/prevent bed-sores. No good blaming the district nurses. 3 x week visits? What can they do in that time, and what happens all the rest of the time? She's incontinent, so impossible to keep this area clean and dry. As fast as you've cleaned and dressed the sores, off we go again.

A predisposing factor to bed-sores is dehydration, and older people can be their own worst enemies here. They think if they don't drink they won't have to pee. It doesn't work like that.

Mum has a catheter and a pressure mattress (at home and in the hospital). The bedsores have only got more severe as she has become more bed bound over the past few months (she has a hoist at home to move her into a chair but the chair has become too uncomfortable); they have clearly got worse since entering hospital as they just don't have the capacity to turn her often enough - the main sore is on her shoulder blade. I get the point re not wanting to drink and this was one reason for the catheter. I agree SS funding is irrelevant but main barrier is still Mum and Dad - possibly because they really aren't that old ho hum.

SandraScarlett

You must be worried sick, downshifter, and it's good that your parents have got someone fighting their corner. A friend's husband was granted Fast Tracked NHS Funded Care last July.


My friend was given the names of a couple of places that the nursing staff and Social Services felt were suitable, but they involved a 2 hour round trip, whereas there was a far better place 5 minutes away.


It meant a week long battle for my friend, who was glued to the phone for most of this time, but she stuck to her guns (she is 74, her husband is 80) and he was allocated a bed in the home of her choice.


He is given 1:1 care, and is never left on his own. She informed DWP, and his State Retirement Pension has continued to be paid, but his Attendance Allowance was obviously withdrawn. They pay nothing else.


For someone in your poor Mum's condition, it sounds like this is what she needs. I know you may have an uphill battle getting them to agree, but as MargaretClare has said (and she gives excellent nursing advice), you're talking about a huge task to care for your Mum properly at home.


I wish you and your family well.


xx