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I need advice urgently - Carers UK Forum

I need advice urgently

Share information, support and advice on all aspects of caring.
Hello, this is my first time posting here but I urgently need advice. I have been a paid carer for my 91 year old grandmother since 2013. She's had a number of health issues from arthritis in her spine, osteoporosis to vertigo which affects her balance, hearing and sight issues and general frailty which comes with old age.

Two years ago my mother came to live with us which has been some help with the shopping and household chores. In that time however my grandmothers health has deteriorated. Despite her numerous health issues she was still fairly active often accompanying me with the shopping but she had hurt her hip and after her first ever stay in hospital she was given zimmer frames and various rails and mobility aids to help her move and physiotherapists came for a while. However she can be very stubborn and it was a chore to get her to keep up with her exercises. In February this year she had a fall in Church and after another hospital stay we had social services and the local council come in to assess the house. Unfortunately we didn't qualify for anything. We were told installing a downstairs toilet was impossible as she didn't have bowel problems nor we could we have a wet room/downstairs bedroom. Even installing a small ramp on the porch was out of the question for reasons they never properly explained. We had to make do with what we had or pay what we couldn't afford. Someone from the council came to discuss a care package but wanted to know the location of the deeds to the house. Suspecting that he was going to try and take the house after she passed Nan refused.

Sadly since February her health has deteriorated rapidly. She struggles to walk even with her zimmers, she often wobbles as if she is about to keel over and many times I have to accompany her to the toilet even the during the night where she uses a commode by the bed. Her mental health has also suffered as often cries that her life has come to this and needs so much help. Sadly because she has become so reliant on my mother and I. Also at times under stress we have been brusque with her which upsets her greatly.

Yesterday it had become a complete struggle to get her to move at all. Her legs would just not go. I managed to get her to the toilet and while I went to wait outside while she did her business she shouted me back in as was slipping off the toilet. I tried to life her back but she weighed too much to get properly back on she'd also broken the toilet seat which was slipping off also, If it wasn't for the frame around the toilet she'd have slipped off entirely. She didn't seem at all lucid struggled to acknowledge what we were saying and when we asked her name she gave a wrong answer. We called an ambulance and she was taken to hospital.

We have spoken to several doctors and nurses and they all say that her mobility is so poor they don't want to release her back until it is safe for. They keep suggesting care packages to install downstairs beds and a toilet but we keep explaining we just don't have the money. All I have is carers allowance + income support, my mother is currently on universal credit and my Nan's pension. Without that we can't pay bills. They also suggest we put her in a care home. I don't think I could do that to her - it would kill her to live that way and even if we could persuade her we still have the money for it.

I don't know what to do. I was hoping for some advice for people more knowledgeable of the system than I. Is there anything you can suggest as a way to work through. She can't stay in hospital indefinitely but she neither come home or go into care.

Thank you in advance.
I've supported all four of our parents in their final years, it's tough. You have to concentrate on what all of you NEED not what you WANT.

Nan NEEDS 24 hour care in a nursing home, for the rest of her days. She is now paying the price for living such a long life, and nothing you can do can stop her getting old and dying. That is the blunt truth.

Who owns the house where you live?
Does nan have over £23,000 in savings or property?
Has anyone mentioned NHS Continuing Healthcare to you?
How old is mum?

To save an essay, once I know the answers to these four questions I can give you a good idea about how the charging system will operate.
I know but it's frustrating as she was still able to putter around the house with occasional help until yesterday. Only two weeks ago the stair life broke down and while my mum and I went to the shops she went up and down the stairs on her own something which I said she should not have done but it's strange that she deteriorate so much in a day.

I'd be willing to look after her 24/7 as I do that anyway. When she came out of hospital with her hip my mum and I took it in shifts with me staying up during the night in case she needed help to get to the commode. I'd be willing to do the same if she lived downstairs but as I said we can't coverting a room into a wet room/bedroom.

To answer your questions the house is owned by my Nan, me and my mother. Back in late 2000s my Grandfather who was still living felt they could take the house if he and my Nan had to go into care so made me and mother shared owners with Nan. It was his wish it not be taken from us.

Nan does not have savings anywhere near £23,000. After paying out a lot in expenses over the years she just has under £2000 in the bank. Not really savings at all.

The house itself is the only property she owns and I don't think it's worth much. I know when Grandad was still alive he had it valued, I don't know how much it was worth but I know he was disappointed with what he was told. Mum is 67 years old and no one has mentioned the NHS continuing care for Nan.

Thanks for your help.
That appears to be really good news, if you and mum own third shares.
The council should disregard the value of the house as nan only owns a minor share.
You didn't say how old mum was? If over 60 it has to be completely disregarded.
Social Services should provide support for her at home, if you can work out a way of making it possible.
However she may fast be approaching the end of her life at her grand age.
Have you ever discussed her final wishes?
Thanks for the reply. A slight amendment to what I previously told you is that Nan doesn't own a share in the house at all. My mum has just told me Grandad transferred it to both of us and stipulated in his will that Nan should remain in the house as a non-paying tenant. I assume that is a good sign. Mum is 62 so that too is a good sign.

Would social services provide care at home even without converting downstairs into something so could permanently live in? Because as I said it seems both the council and social services are unwilling to do that unless we pay.

To be honest we haven't discussed her final wishes. Obviously it's nothing we like to think about and until yesterday. I still hope yesterday was just a bad episode and if we could get her mobility back to how it was we could manage as we had been.
No need to worry about the house then, good.
The hospital must make sure her discharge is SAFE.
Any costs of adaptations must be paid for by Social Services or the local council. Google Disabled Facilities Grant.
Thank you so much for your help. I'm googling it now. Hopefully we can get Nan home soon. Thank you again for your advice. It's very much appreciated.
Happy to help. It's a very sad time.
Hi, I'd just like to thank you again for the advice and give an update and if it's not too much trouble ask for more advice as that situation has gotten worse.

This morning we had what seemed to be good news from a social worker that the physiotherapist had assessed Nan and was pleased that she was back to her baseline mobility and was okay with discharging her if me and my mother looked after her. Naturally we were pleased she was coming back like she was before.

Unfortunately when the ambulance came we were shocked that there was barely any change in her at all.She could barely move. She says the physio only walked her to the door of her ward and back and while he was impressed she knew she wasn't right. A few hours back she needed the toilet and we moved the commode right next to her arm chair but it took the two of us a tremendous effort to get her off her seat and onto the commode. I don't think we can do that every time she needs the toilet particularly during the night. Tonight she's going to sleep in her arm chair as we're not confident she could even make it to the stair life and then on to the bedroom.

Even with a grant to make a downstairs bedroom and toilet facilities I'm not sure she'd make it there. Carers coming in to help would only do so a certain points in the day. We'd provide 24 hour care if she was at her baseline mobility but she simply isn't and I don't think she ever will be again. As much as I hate to say it the only option seems to be a nursing home but I'm not sure we could afford it.

Any advice would be appreciated.
Ring the hospital tomorrow, ask to speak to the CEO's office and complain about an unsafe discharge. Use those exact words. If the same thing happens tonight, don't be afraid to call an ambulance.