Caree in denial about own abilities

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Hi All,

Newbie post - My hubby and I just coming to terms with the sudden decline of his 83 year old Mum. She was admitted to hospital on 1 May, following a heavy fall at home which damaged her neck. After spinal surgery and a long recuperation, she has regained movement and some strength in her arms, but her legs are very weak and despite daily physio, they are beginning to draw a line under her long term likelihood of being able to walk again.

Hospital have now done all they can and pushing for discharge. OT organised hospital bed for home, along with various aids and equipment and she will be having 4 times daily care package. We had her discharge review yesterday, and she is in so much denial about what she will actually be able to do for herself at home. All we keep hearing is "I will manage" and "Just want to get home and get back to normal" ... normal is never going to be what she remembers; she was still driving her car 2 days before the fall and now cannot even stand unaided. The review yesterday talked about carers and meals, obviously something quick to "ding" in the micro ... "but I can peel a few veggies, and boil up some stew, and manage to use frying pan or put something in the oven" ... she cannot stand, reach, move between rooms, transfer herself ... the Social Worker told her that unless she will promise to try ready meals with the carers for a few weeks at least, there is no way she can go home ... she has flatly refused a care home placement even though its been offered. She reluctantly agreed to try some meals and I have been and filled her freezer today.

Then went on to night time toileting ... "I will shuffle over to the commode if they leave it next to the bed" ... not an option, she will be padded for night-time and put the bed when last carers come and alone until morning ... horrible solution and very degrading to a formerly proud and independent lady, and we can see her trying to reach the commode or loo at 3am and ending up on the floor. We went around the houses, trying to avoid telling her she will be padded and left, but in the end had to be blunt and she ended up in tears ... not what she wants, but all she will have if she goes home.

She is also going to be extremely lonely at home, stuck in 1 room just clock watching until next carers due. We wonder what would be the difference from being confined to one room all day at home, and the same scenario in a care home but with staff available 24/7 if she needed someone ... tried to explain this but she wouldn't take it on board, just insists "I am going home and its my decision". Don't get me wrong, I understand what a momentous and difficult decision going into residential care must be, but we are so worried that within days she
will be on the floor in the middle of the night, or refusing the eat "that frozen muck" that the carers are preparing for her. Maybe we have to be cruel to be kind to make her experience that being at home is going to be degrading, boring and lonely, so let her prove it to herself?

I know there are thousands of elderly in similar situation and that we as concerned relatives are not alone. No one can help us sort this situation, as she has full mental capacity and its what she want, but just feels better putting it down in print ... thanks for reading if you have got this far :)
My mum was in the same situation, hospital pushing for discharge, I said she wasn't ready and didn't let the bed in. Ward sister said she knew mum had a front door key and would go over herself to let it in. I said there were two front doors, and I'd make certain that the second one - which only I had a key to - would be permanently locked.
For my mum, a very particular person with OCD about cleanliness, the thought of having a bowel movement at night with no one to clean her up, was the deciding factor. In the end she moved into a nursing home. Make sure your mum realises that if she chooses to go home, she must live with the consequences or move into residential care. You cannot be involved. Even get her to sign that she accepts this perhaps.
the way forward might be to yes, let her 'try' going back home, and letting it become 'horrible' and then suggesting a 'respite break' in a care home while you 'try and sort out something for home'....and then see how she gets on in the care home. Have you checked outthe placement she was offered, as to whther you think she might like it (ie, is it a 'nice' home' - some are, some arent') and if not, then trying to find another one for her.

One option I recommend is this - a kind of 'weekly boarder' at care homes, so that IF you and hubby are up to it, she lives in the care home during the week, and 'comes home' at weekends -IF you can look after her yourself. NOT every weekend though (you need your holidays too...)

It's all desperately sad....
Other factors to consider are whether or not mum owns her own home? Does she have over £23,000 in savings? Is she currently claiming Attendance Allowance? Just yes/no answers are sufficient, for us to give further advice.
Hi again, thanks for replies.

She does own her own home, savings wise I doubt she is anywhere near the £23K threshold, and at present no attendance allowance as she has never needed anything in the way of help or care at home, which is probably why she doesn't feel she needs it now.

We are aware of the care homes that were suggested, and atleast one is very good and she knows several people who have been there and some who still are. Someone in the same ward was actually discharged to the home a couple weeks ago and we caught her talking to the family, saying how great it was and if she ever needed care she wouldn't hesitate to go there ... then only days later was refusing to even consider it, as thats for "old people" and I don't need it yet ... :(
I think you need to keep talking in in terms of BF 'before fall' and AF 'after fall'.
Keep agreeing about how well she managed BF and how lucky her mind is still good but do keep talking of how physically difficult it may be AF. Then let her have a try at home but build it up that it might be physically easier to have help 'on tap' in a Home, heaven forbid she should fall again someone would be there instantly, and how in a Home she will make friends that stimulate her mind , but that she can chose when to go to her room
All so that when she tries and finds it isn't easy she can save face about going into residential. It's not that she can't cope, she could BF, its just her AF legs that stop her, the rest of her is fine etc etc

However do be aware that Homes are expensive and would likely mean the house needs be sold to pay. If she can cope at home, albeit very restricted, that may have to be an option.
Key I think is that she feels she has choice. My mum did and is happy, my FIL didn't and never really settled

Apply for Attendance Allowance asap. There may be a qualifying period. If she moves into residential care, it will cost around £1,000 a week, but at homw, with limited savings the LA will pay some or all her care costs.
However, she might qualify for NHS Continuing Healthcare. Google this for more information, and tell the hospital she isn't going anywhere until they have done the checklist properly, involving you! If she qualifies, and its a postcode lottery, all care at home, or residential, will be paid for by the NHS.
Hi again,

Thanks for replies and info, sorting Attendance Allowance as advised - what a dissertation that application is! Also applied for LPA and have forms ready for signing, however things have moved on a little.

MIL has an Urgent Case Review at hospital next week. Case Co said its going to be attended by Dr, Ward Sister, Physio, OT and herself, with MIL present and they would like us there too. In her words "It will not be an easy meeting" as they are all going to present a case for MIL not being fit to go home alone and advise care home will be safest option. Not sure if they can insist if she still refuses, as she is fine mentally, but I think they want to try to make her understand the limit of her abilities, which are unlikely to improve.

When I spoke to Case Co yesterday, I had just visited MIL and she was telling me they had tried a new frame and she has walked across the ward this morning ... Case Co said she this is not true. Dr has reviewed her spinal issues and says the damage is progressive and the limited strength and movement she has now is never going to improve further, but will just decline. MIL just keeps saying "a few more weeks here will get me back on my feet" ... she has been in hospital since 1 May, and little progress yet ... We have to be guided by the medical professionals who have been looking after her all this time, as we only see her 4-5 hours a week, always sat in a chair and never on her feet, and they wouldn't be making these things up ... just got to convince her of that too :(

Wish us luck for Tuesday, as dreading it ... :cry: