Nursing home dread

[Cherrysherbet]

My Mum suddenly stopped walking nearly two years ago. She was 76.
We lived together until that time, along with my dh and our three children (2 are adults).
She spent 6 months in hospital where she had terrible treatment, truly shocking.
She eventually came home to us with a care package. She was immobile, confused, and incontinent. She couldn’t weight bare at all. She had two carers, 4 times per day to provide personal care. Dh and I then did everything else in between and at night. I had to cut my working hours down to the minimum, as Mum had to to have supervision 24/7. My Dh was here when I was at work, and I’d come home, then he’d go to work. I couldn’t take my Dd out, and time with her was difficult as Mum shouted for me all day long.
It was so difficult, mentally, physically and financially.

After a few months, she was taken back into hospital, as she was very poorly. We then had to make the decision not to have her home again. We just couldn’t do it.
I fought hard to have her local to us, and she was sent to a nursing home just round the corner.
This was nearly a year ago, and my goodness it’s so awful. They take care of her basic care needs eg.. washing, feeding, turning etc…. but she is in bed all day everyday. The only stimulation she gets is when me and dh visit. The staff refer to her as a room number. They don’t know her at all. It’s just so sad. She’s a person, she was a nurse herself once. She has so much that she still remembers, and can make choices for herself, but nobody bothers with her.
Dh and I try to go as often as we can, but honestly it’s so depressing. She cry’s and said yesterday that she wishes she could die. I don’t blame her at all for thinking that. She has dementia, and I know things will get even worse.

I feel so guilty if I don’t go. I didn’t go today. I slept when I got home from work instead. I feel so bad. The visits take up so much of my mental energy. They bring up so many awful thoughts each time. She begs me to help her get home. I just tell her that we have to wait for her legs to get better first, but obviously they never will.

She lies in bed, looking out of the upstairs window at the sky. She never sits in a chair or has any fresh air. The carers come in and roll her around to change her pad, which she hates. They barely interact with her at all. This is no life, it’s crap for her, and devastating for me and dh to witness.

I just can’t believe we treat our elderly people like this. Is this the norm? This home got a good rating from CQC. A glowing report! I don’t understand.

I’m just so sad, and it’s getting me down. It’s been two years of worry, trying to sort things for her, and visits….. the endless visits 😢
I feel so guilty when I say goodbye, and she wants to come with me, as she doesn’t understand where she is.
Is anyone else in this situation? I’m on a massive guilt trip, and just wish I could get her better care. She deserves it so much.
Thanks for reading. Sorry it’s so long.

but I could move her to somewhere far away, and it could be even worse? This place has a good rating from CQC, and the inspection report paints this as an amazing home. How do I make that choice? Take your time, ask questions, eg about staff turnover, look at the excellent lists of questions on-line, go and visit, listen to how staff talk, how happy staff are, find out whether the manager is on the scene day by day, even ask on facebook for recommendations.

Dad’s nursing home that I described above I think has Council funded residents (I’ve never been asked for proof of availability of funds) and is at the cheaper end. Often higher fees buy you better looking facilities, with restaurants, hairdressers etc that your Mum will never use. Cheaper is not necessarily worse.

My mum is in a dementia care home. There are several residents who can't walk but they're up and dressed and downstairs for the day every day, involved in activities and the staff chat with them all frequently. The home itself looks a bit shabby to be honest, no particularly special facilities but the staff are amazing and all permanent staff who have mostly been there a long time.

I knew the first time I spoke to the manager on the phone that it would be the right place for my mum, I tried to make an appointment to visit and they said to just pop down any time - to me that shows they look after people constantly and don't need to 'prepare' for visits.

Its the most friendly and loving place, all residents are treated with dignity, there are usually around 5 staff on duty at any time for 22 residents. They have activities that families can join in with too (coronation barbeque for example) which is lovely.

The home is a local authority rate home, no top up fees - I really don't know how they staff it so well for what they charge when I compare it to other homes I've seen.

I really recommend you have a look at other homes, my mum is 20 miles from me, I pop in 2-3 times a week but I feel confident that she's well looked after in the meantime.

MereDintofPandiculation
Thank you. That’s good advice.
I fought so hard to keep her local. This place is much more that the council usually agree to pay. I assumed everywhere that is the same fees would offer the same care, but you’re right….I need to go and look. See what feeling I get from places. I guess this time I will know what she needs, and what I won’t accept for her. This has been a tough couple of years and in all honesty I’m exhausted mentally. I need to keep fighting.

LadyShmuck

Thank you. Your Mums home sounds lovely, and just what I want for my Mum……somewhere that she can live her last years with dignity and real care. Not somewhere she’s gone to die. That’s how it feels.

She needs things going on to distract her from the monotony.

I never feel like I can have a ‘day off’ from visiting, and she’ll be fine and looked after. I’m always flagging up basic things that they miss. In the last two weeks she’s been severely constipated, resulting in distress that nobody noticed. Then she was completely deaf for a week and again, nobody noticed. I arranged to get her ears syringed and now she’s fine again but it was distressing for her to not be able to hear when she is having the most personal care. This just shows me how little they interact with her. How can they not notice she was deaf and upset? She literally couldn’t hear a word!

You really don't need to visit her every day. Your needs have to take priority, so once a week is surely sufficient.

Op there are charities that organise frequent visitors to old folks homes to keep them company. Usually it’s only one to two visits a week but it would be extra company for your mum and take pressure off you and generally it’s the same person so there is continuity! Might be worth contacting one to see can one be organised. I used to do it myself before I had my babies and had to give it up. But I grew very close to an elderly lady with dementia, she lasted three years after I started the visits and I know they benefited her(and me! ) greatly. Aside from chats I had basic training in activities to do with her so it just meant she had entertainment and company for the few hours each week. Because it was a charity there was no charge either!

So sorry you’re going through this. It must be heartbreaking to see your lovely mum not receiving the full care she needs and being treated disrespectfully. You’ve already raised a concern with the useless lazy arsed manager to no avail. It’s time now to escalate it further up the chain of command. Also it’s possible to raise your concerns with the Care Commission and they will investigate while letting you remain anonymous. They are likely to do an unannounced inspection.

I hope the situation improves for your mum 💐

@Cherrysherbet the first few weeks I went in almost every day at different times, I think just to satisfy myself that my mum was being well looked after.

When you find the right place you won't feel like you 'need' to be there every day as you'll know your mum is cared for and happy. Its honestly disgraceful that your mum's home hadn't noticed deafness or constipation. At my mum's home they're very open about sharing care plans and daily care records, they also have the local GP come in once a week to check everyone over.

I really hope you can find your mum a good home, it must be very distressing for you to have this constant worry.

I never feel like I can have a ‘day off’ from visiting, and she’ll be fine and looked after. I’m always flagging up basic things that they miss. Oh, you shouldn’t be feeling that! My Dad’s health improved noticeably when he went into the nursing home. I t was clear that they were able to look after him far better than I was.

He now thinks he’s in a hospice.

I suppose another sign is the signing in book. You have to say who you are, who you’re visiting, can you get yourself out in an emergency, time in and time out. There’s no column for Room no. I just say I’m visiting Frank, above me someone will be visiting Alice. All the staff know everyone.

He was there all through Covid lockdowns. I had the distress of worrying about whether he was worried or lonely, but no worries about physical health.

It was a better home you wouldn’t always need to visit every single day. And you wouldn’t need to get there that quickly . 20 miles is fine

For what it’s costing could you bring her back to yours and have a live in carer for her? I did it with my ex mother-in-law, although the carer wasn’t live in she was there a lot. I know it’s relentless but that home just sounds awful

I couldnt disagree more.

My DF was in a care home for his last two years. It was very good, but someone from our family visited every day. He had advanced dementia and aphasia and only responded to his family. My 2-3 times a week round trip of 3 hours driving and couple of hours visiting was my last gift to him.

My parent has been in four different care or nursing homes over the past two years (different hospital discharges with attempts at home care in between) and not one has been as bad as you are saying. You have little to lose and quite a lot to gain by looking at a more distant home.

Problem is, you can’t switch off from loving someone and caring about what’s happening to them. If they’re in a home which you know is not meeting their needs, it’s on your mind all the time, and you feel driven to visit as much as you can to mitigate. I’ve been there.

I sometimes felt like Mary Poppins sweeping in to put right all the wrongs - food and drink left out of reach, a catheter tube out, on one occasion(!) On another, Mum sitting on the elevated foot of a riser/recliner chair having wriggled down to the end because she was desperate for the loo and they’d left her so long (I had asked them not to leave her with the footrest elevated) that she was soaked. I ended up (probably against regulations) helping her to the commode, cleaning up and changing her fgs.

These and many more were all just by chance when I turned up at various homes she was in for respite care over the years she lived with us. Oh, she was a lifelong vegetarian, which I obviously told them, and I visited her in one home at tea time to find her with a ham sandwich, despite the copious ‘life details’ I’d been requested to furnish, to assist them in their ‘care’ of her. So communicating between staff can be a problem, let alone between staff and residents.

I never found the ‘dream’ home, but I hear they’re out there, so I hope you do, op.

I am so sorry for the abusive 'care ' your Mum is receiving. And for your distress. You really must look around for alternatives. BUT while doing so, COMPLAIN, COMPLAIN, COMPLAIN. Keep a note of everything that has happened. Inform the authority who placed her. Request an urgent review of her care, with yourself, social worker and home manager. Write all of your concerns to the care commision and copy it to the s.w.department senior. Remember, if you are successful in moving your Mum, there are other present and future residents to consider. This home needs the Care Commision to put a warning on, or to close it down. Good Luck xxx

That care home sounds awful, and I have experience of two care homes, at both of which my relations were treated as humans and well looked after.

A twenty minute drive is nothing, in the scheme of things. Get her moved.

It sounds horribly like the home my mum was in for 3 weeks. It was awful.

My sister made a humongous complaint to the CQC. Mum is somewhere else now. Not perfect but it's night and day all the same. It doesn't have to be like this.

One of the biggest changes was when she was seen for her mental state by the mental health team. They were the first people who got through to her, because they were specialists. Ask for a GP review as she is expressing despair and crying.