Previous lurker asking for Care assessment comments

Tell us a bit about yourself here.
Hello everyone. I’m 67, have been caring for my mum (89) essentially for the last 10 years (living with her for the last 30 since my father died as at the time it made financial sense. Wrong call). She cannot walk unaided as her balance is non-existent due to a genetic foot deformity so she cannot be left for fear of falling. I had to be behind her at all times. In addition her hearing is bad and she has limited sight through ARMD in both eyes. The house is in joint names. I work from home to enable me to look after her as basically she can do nothing herself now. This means I have to start work at 6am in order to put the hours in each day to allow for getting breakfast, lunch etc. Essentially I have been confined to the house most of the time since she had a stroke 3 years ago. I’m at the end of my tether but I don’t have to explain that to anyone here unfortunately 🤕 so won’t go on.

She is in hospital now but is slated for discharge. She has been assessed as requiring 4 half hour visits a day and nothing else. They have said that that is all she needs - even if I was not living in the house when I said that they were obviously assuming I would carry on and pick up the slack. Whereas before she could walk to the loo with her trolley (and me in tow) that is now out of the question. And she is now incontenent.

My query is how is 4 visits considered safe for someone who cannot move or see enough to even put the radio on/change TV channels/let alone see who is coming into the house? An “independent” existence?? How can a care assessment be made in hospital when they have no idea of the facilities in the house? She’s transferring in hospital with 2 Carers and a “Steady” so If they are thinking of sending one of those out ...well I had to take the bathroom door off to let the trolley in so there’s no way one a “Steady” will go in.. And there’s not much room in there...is she just to have a strip wash in the front room then???

I am torn between a carehome but she has to agree as she has capacity, or trying to continue as before and topping up the care. She has savings which would last almost a year for care home fees but I have been told that the care fees might not be paid after that and she could then be sent home with the care package.

At present she is putting off making a decision and I’m pretty certain that she doesn’t understand that if she comes home she will only be moved from bed to chair to commode and back. That will be it - Previous outings and Day Centre attendance as before are going to be impossible as I am unlikely to be able to manhandle her into the car now. So I will not even have the breaks I had before.

Sorry for the length. I have picked up quite a few tips in my previous lurking 😊 and sometimes wondered what I was moaning about compared to what others have to cope with. You’re all amazing!

Ann
Hi Ann
Lurking is good. Most of us lurked before plunging in : :D
Start by remembering the phrase 'unsafe discharge' and be prepared to quote it at anybody discussing Mums discharge. That should buy you enough time to ensure the discharge procedures are followed fully and thoroughly. It sounds like they have identified you as a competent and always available carer, a godsend in their eyes BUT you are ( or will become) an informed and knowledgeable carer (or non-compliant in their terms).

Yes they would love to discharge her that way, and do to many and yes it is scandal and a disgrace.

Am sure other posters will be along with the details but search discharge, reenablement and chc and start your learning. You are not alone and you are going to fight to get the best possible care package for her, and for you.

Kr
MrsA
Welcome to the forum Ann but sorry to hear about what you are coping with.

Take a read of the information on this link, about discharges from hospital. It explains various options open to you and how to go about it. Take note of requesting a carers assessment in your own right too.
https://www.carersuk.org/help-and-advic ... f-hospital

As much as you will want this sorted, please don't allow any pressure to be placed on you. All of us here realise how difficult it is when our Loved ones are in hospital, but just now that is actually a position of strength for you. As suggested by Mrs A, make enquiries to your mams ward about them doing a Continuing Health Care check. These are all best done when someone is still in hospital. If you bring your mam home too soon the wheels don't usually turn as quickly as they expect family carers to continue coping.

Have you and your mam spoke about the options Ann? I know you have said that she can't make decisions just now, but it must be a frightening issue for her to face.

Has she been assessed regarding her incontinence and decision made about how many pads etc she would be entitled too?

What about you Ann?... what is it you want to happen. These are difficult choices for you too. Many members on the forum have been through this and will be more facing it in the future.

Has your mam ever tried a few weeks respite?

How is your own health Ann? If mam does come home do you feel able to continue coping?

Please don't feel like you need answer the questions above. I only posted them to try help you cover some of the bases.

If you have a local carers group, Age UK office, they can sometimes assist with advocacy. CarersUK have a helpline no too and we can provide it if you want it.

Again, as suggested by Mrs A previously, use this time to gather as much info as possible, get to know your own rights as well as those for your mam. The better prepared and armed you are, the more chance you have of getting a satisfactory outcome. Only time will tell if it works long term but if not, back to the drawing board so to speak and try an alternative.

Which ever the direction you and your mam take, please continue to use the forum and keep us posted. So many members have gone through this, and although what works for one family may not work for another, most of the feelings felt are the same. You will get real empathy and support here, never judged. What is the old saying..... " Walk a mile in my shoes or live a day in my life" . Us Geordies normally add a different ending of... "Till then, shut it " :o :lol: :P

Good luck

Rosemary

x x
CHC / Hospital Discharges ?

Main thread :

https://www.carersuk.org/forum/support- ... read-35998
Thanks both. I had a Carers assessment about 3 years ago from which I eventually got 3 hours help a fortnight 6 months ago. We privately employed a care agency to get mum up and dressed 4 mornings a week following a fall which resulted in her breaking her neck. They picked up when the reablement team stopped. Otherwise she seems to be built of rubber!

She has been assessed now for incontinence and will have 4 pads a day as far as I can see. CHC has been refused as she does not have mental, behavioural or any other physical issues apart from not being able to move or stand without help and the usual short term memory loss. At the moment I have refused to sign that as I disagree with one of the judgements on mobility. She has been given virtually all As on the form (I assume it’s a standard form and you’ll know what I’m talking about) so that doesn’t affect the outcome but have learnt enough to know that “give em an inch and they’ll take a mile”.

At present mum is ducking the issue by saying she “has to think about it” so in a way that buys more time for me too (cheers mum!) although she is just not grasping what the situation will be when she is home.

While I rail against the fact that many single elderly are now left to their own devices I’m concerned that in my mother’s case she cannot move, see or hear and is to be left alone in the house (taking me out of the equation as they say the same would happen if I wasn’t here) for 22 hours a day 7 days a week. How is that safe - maybe I’ll ask the RSPCA to step in??? I can’t change her on my own and know this as before she went into hospital the GP got emergency reablement cover for the weekend and the first night only 1 could come so she relied on my help and said over and over “there’s no way you could do this on your own “.

Really I know that I can’t keep putting my life on hold too much longer - already in tears most days, go without sleep and often end up shouting at her- but I just feel desperately sorry for her and want to do all I can to mitigate her situation if possible. I arranged a weeks respite last October which was not ideal but wonder whether having her back home with more help and regular respite might be a temporary answer. Or is that asking for trouble and me ducking the issue as well? I’m acutely aware this is my time of maximum leverage after going through several other hospital spells and follow ups.

Sorry for going on again 😱

Ann
CHC refused ?

A refusal is NOT for life !

Appealed ?

NHS Continuing Healthcare / NHS Nursing Funded Care are also options.

Considered ?

Main thread again.
Is she aware that going home would involve sitting in her own poo, possibly for hours until the next carers came? For my mum, this was the deciding factor in moving into residential care.
Are you worried about the house having to be sold to pay for care? In your situation, as it's in joint names, I don't think that applies, so she would only pay out of HER INCOME & SAVINGS ONLY, but do check wit a solicitor if possible, about the house being disregarded. How old are you? If you are over 60, because you live there, it would be disregarded anyhow.
From now on, mum is only going to get even worse, never better, so surely now is a good time to make that final move, rather than go in and out of hospital like a Yo Yo (as my mum did for 10 years or so)?
Hello bb

That’s what finally made me realise that a home discharge was out of the question for her quality of life. I know and rail against the whole results of the austerity programme but am still shocked that anyone is prepared to put another human being in that situation. The problem is that I cannot get that through to her and she seems to have disengaged from the whole process. That is different from before she went into hospital- but then every time she goes into hospital she comes out a bit worse.

I’m 67 so have no worries about the house situation thank god. I had a long conversation about that and about a joint savings account we had for house issues with an Age UK advisor. He put my mind at rest. The reablement team leader had previously tried to say that the joint account would be completely taken into account even though I could prove that most of the money had come from me. Social services have not raised the issue so far but I’m prepared to fight. Just hope the Government do not try to change the law again.

The only issue is that the Care navigator (where do they get these titles?) has warned me that her savings will last about a year and after that there is no guarantee that funding would kick in and she could be sent back home. I don’t think that would happen but the thought is still there now.

Ann
If they did their jobs properly rather than wsting time inventing stupid titles things would be a lot better.
If the account is in joint names, then I'd be emptying that account and transferring it to one in my name only, especially as most of the money was originally yours.
I don't think there is anything they can do to stop you doing this, but please check. (We have a former banker in our midst, I'm sure he will comment).
Just to update - mum has said she wants to come home. As they have ascertained that she has capacity there isn’t anything I can do to stop her. Going to try again with a nurse to try and make her see that life will not be the same as before. At present it looks like we will be adding a Steady to our home collection 😟
Going to try and see if I can find a space in a Care home and suggest she needs “convalescence” for a couple of weeks as temporary solution.

Starting having Carers in again on increased basis is proving difficult to source as they are all stretched. The only good thing from that is that she can’t be discharged without the so-called care package in place.

Ann