Mum will die in care home

Hi,

I’m not asking for help because I know there is no longer anything anyone can do for us. Today, I realised I must finally accept the inevitable, and just watch my mum deteriorate and die in the care home they have dumped her.

We have always shared a home together. I am an only child without any other family. Mum, despite her arthritis and osteoporosis, was a sprightly 96 yr old, walking indoors with her frame, and being cared for by me, 24/7. She receives intensive private physio on a regular basis from an accredited medical facility a few doors up the road from us.

When the country went into lockdown earlier this year, mum was unable to be visited by her therapist. She lapsed with her exercises and, on July 24, her right leg became stiff and began to give way as I helped her out of the bathroom. I tried to stop her from slowly sinking to the floor, but I hadn’t the strength to keep her upright. She didn’t fall, but she ended up on the floor.

To cut a long story short, she’d landed in a bad position and fractured the part just beneath her right knee replacement. She was put into a full plaster cast and admitted into our local general hospital. 3 weeks later, she was discharged and admitted to a rehabilitation hospital within our London Borough. Unfortunately, her time there was wasted. Being totally immobilised by the cast, she spent most of the next weeks lying on her back in bed! Then came her discharge date. There was the usual ‘best interests meeting’ where it was decided that mum could return home with a hospital bed and hoist in her bedroom.

We live in an original hayloft above what was once 2 stables in a Victorian coach yard. Our rooms are tiny. Mum’s bedroom is the smallest. No way could a hospital bed fit in there! Their solution? Put the bed in the living room!!! When I argued both the impossibility and absurdity of this, I was threatened, intimidated, and humiliated by the ward manager at the rehab unit. I made a formal complaint about her.

As the bed and hoist were out of the question, mum was put in an ‘interim care placement’. She waited 48hrs to be moved there while someone had messed up the transport. She became agitated and confused as a result. By the time they moved her into the care home (after 9pm that day) she was in total denial as to where she now was. Covid restrictions prevented me from visiting her and, week by week, she became more confused, depressed, and refusing to eat. She had now been in a cast for over 8 weeks. She missed some 4 appointments at the Fracture Clinic as the transport was always messed up! Finally they removed the cast, but put her leg into a brace instead. She stayed like that for another 4 weeks. One Friday evening, she suddenly began acting strangely. Next thing I knew, she’d ended up back at the general hospital suffering from extreme dehydration and delirium! They put her on fluids and she recovered. Her brace was removed about a week later. I received a call from the hospital suggesting ‘mum could do with some physio and rehab’. I agreed. So back she went to the special physio & rehab hospital! Trouble there was, she received hardly any physio whatsoever! Each time I visited her, she was slumped in a wheelchair. When I rang her each day, she was forever ‘lying on her back unable to move’!

Once again, her discharge date came around. There was another ‘special interests’ meeting via Teams. Yes, her fracture had healed well, yes, she was clinically fully weight bearing, and she was to be discharged last Thursday, December 10. She could return home at last … with a hospital bed in the living room!!! They had now conceded such an arrangement was beyond the dimensions of her bedroom, so, the living room it had to be!!! We were back to the old argument! We’d been in a very similar position about 3 years ago when mum was actually still encased in a leg brace. No one so much as mentioned a hospital bed then! I had cared for her with the help of district nurses after the hospital had kindly left her with a Grade 2 pressure ulcer, which became a Grade 4 in days! When the brace was removed, a neighbour introduced us to the physio practice down the road. We learned that, among other things, they specialised in physio & rehab for the elderly. Just 2 intense sessions later, mum was up and walking with a frame, unaided!

Which finally brings us up to date. Without even informing me, and totally against both our wishes, mum was removed from the rehab unit and dumped back into the care home she was in previously! They proclaim she hasn’t the mental capacity to make her own decisions! I, as her daughter and official carer, mean nothing and have no say whatsoever! She is denied receiving her private physio because she cannot return home. The practice owner confirmed that the hospital bed was unnecessary and has been in discussion with the social worker. Mum’s GP has also tried to suggest a workaround but, to this moment in time, I’ve heard nothing further. I telephoned the social worker twice, late this afternoon, and left messages. Either he’s been out or, more likely, is now avoiding me. Mum needed to be home for Christmas. She told me, when I rang her this evening, that she will die at the place she’s in. She was crying so much until she could no longer speak.

It looks as if this is the end for her, and of me too. How has it come to this? Is THIS in her ‘best interests’? In my care, she has never come to any harm. My love for her cannot be described in words. I must now stand by and watch her deteriorate and die. But for a hospital bed, our lives as mother and daughter (plus the 3 pets!) is over. We are beyond help, but thanks for listening.

Dear ArtsyMo,
I am so very sad to read your story, I can’t begin to imagine what you are going through but can relate being the only child , I worry about all the things you have mentioned.
A friend who’s Mum has dementia since the age of 40 and has been in a care home since then strongly advised me to gain power of attorney (even when my Mum is well) because you have no powers otherwise to make decisions on your parents behalf. I strongly suggest you look into it and if your Mother is able mentally to understand, you should definitely get that sorted, put the power back into your hands.
Is your home owned or rented ? Could you get a more suitable place to live which would be more accessible for your Mum ? Maybe all on one level ? I know the council offer grants to convert houses for disabled access.
Please don’t give up hope, there is always something that can be done, its just a case of searching until you find the answer.
Thinking of you and sending positive vibes. Take Care. J

Hi Jenni,

Thank you for your response.

Can you believe that mum’s GP actually told me that, even if I had Lasting Power of Attorney, it wouldn’t make any difference in this particular case … ??? That’s not what I’ve read. I’ve named him as the Certificate Provider (which he’s happy to help with) but the documents are still sitting on my desktop from September!!!

The local council owns our home but we would NEVER give it up for another ‘one level’ or more accessible space! We live in the most affluent part of London, within a wonderful diverse community. There is no racism, harassment, or vandalism here. We are a melting pot of cultures and that is what I love about it. People would pay a fortune to have our address!!! :smiley:

And now for potentially better news. On Thursday evening, I took a 2nd look at the layout of mum’s bedroom. Looks like I had missed one vital point! Because the property is on a ‘slant’ against the back party wall with the adjoining mews, it gives out something of an optical illusion. You don’t realise that the amount of space is actually different to what you’ve always accepted. On further investigation, I’d found that mum had stuffed a whole lot of rubbish behind her headboard against the back wall! So, even though the room was slanting, she’d robbed herself of a good few inches! Also, I’d always thought her bed was a divan. It wasn’t! She has 2 sliding drawers at the bottom. What ever made me think it was a divan??? :-???

She has a high-risk mattress on top, and THIS is the only important feature of her current sleeping arrangements. To be brutally honest, her bed-base is truly horrendous! She has the old fabric surfaces stuck down with brown tape!!! Wtf??? So I grabbed my tape measure again and went back through the entire process. YES, that hospital bed would fit in where her current bed is, and no, this would not interfere with the entrance space to her room whatsoever.

When you come to think of it, the hospital bed (being adjustable) would allow her to sit up, drink a cup of tea, or read, without having to be propped up with a load of cushions which never supported her in the first place!

I rang the care home and ran the whole idea past mum. She said she no longer cared. I should do what I believed to be right, and all she was interested in was coming home!

I then rang the social worker to explain what I had discovered about mum’s bed. We could have the hospital bed in her room after all, although the hoist was out of the question and unnecessary anyway. Finally we came to a tentative agreement. He said he’d need to get Occupational Therapy involved to see what else mum might need. I said, fine! The only issue remaining was the removal of mum’s old bed base. I’d need 2 men with a large van! Of course they have outreach connections for that sort of thing. I assume the hospital bed comes fully unassembled? Otherwise you’d neither get it up our stairs or into the bedroom … Yeah, it HAS to be … :unamused:

So now I wait until Monday. If only we weren’t at Christmas already! I doubt we could get mum home by then. Oh well, the Christmas dinner is down in the chest freezer so it’s quite safe there!

I live in hope that I’ve finally reached a solution. Mum HAS to come home!