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.

It’s your mum and you’re sad that this is happening and yes it is very hard.
But, you cannot do anything more- even if she was with you with a full time carer she would still have dementia and little understanding of the world around her.

And whilst she is slowly disappearing as the person she was you still have your life to live and all you can do is your best by her and that wouldn’t ever be forsaking your life to making hers more comfortable so that you could feel at ease.

She has dementia her spark is dwindling and it has been said it’s the death of a kind while the body is still awake - so concentrate on just giving her set times of the nicest things you can - maybe once a fortnight you could go earlier and sit outside with her for a while (she won’t remember this afterwards) maybe wiping her face and spraying her perfume on her will make her more comfortable, talking about times gone by.

You have to try and detach your emotions from this as it’s kind of a hollow of your mum now xx

Can you source a better care home?

My dad is in a nursing home and in bed all day every day. But he’s 100, so that’s forgiveable. He is known, by all the carers, the nurses, the laundry lady, the manager, the cooks, the activity coordinator and the handyman. He is content. So it is possible you could find a better place, even if it wasn’t so convenient for visiting.

Meanwhile, try taking things in, flowers, a mobile. Would she want a tv or a radio?

How’s her short term memory? Once it gets bad enough, you can solve the distress of leaving by saying you’re nipping to the loo and will be straight back. By the time you’re a dozen yards away she’ll have forgotten completely.

I’m so sorry you and your mum are going through this. I worked in a care home for 3 years a few years back and for bed residents the activities lady would come into their rooms to do things with them. It was games, reading, a puzzle, crafts, music or sensory stuff depending on what the person could manage. Is there an activities person at your mums home? I would speak to the home manager and ask about what can be done to help her.

Holliegee
Thank you for your reply. She can’t go outside unfortunately. The only chair that she is can sit in, is broken, and they have no maintenance person atm. It’s just a catalogue of excuses as to why she stays in bed 24/7.
If only detaching my emotions from her were an option. I wish I could, but I love her so much and can’t bare that she’s going through this.

Borntobeamum
Its the only nursing home nearby. We would be looking at least a 20 mile drive for another. I honestly don’t think I could chance moving her, as we may be jumping out of the frying pan into the fire! It would be a risk, and we wouldn’t be able to get to her quickly if needed.

MereDintofPandiculation
I’m glad to hear your Dad is known by everyone and is content. I was hoping this is what it would be like this for Mum. I never witness any interaction. To them, she’s just a room number. They talk in front of me, and call her by her number. It’s so upsetting.

I decorate her window with different things, and change it often. Eg.. I did an Easter theme, then coronation etc…. anything to make it different to look at. She has a tv, but can’t take it in, it’s just something to listen to.
Her short term memory is not good, but she would know if I said I’ll be back in a minute. I know the decline will happen, but I don’t know when. How do I enjoy my life knowing she’s is such an awful situation?

I thought they would at least bring her out of her room so she could talk to other people.

Blackbutler86
They haven’t had an activity person for a few months now. Nothing going on at all. It’s so depressing. This is meant to be a good home.

The manager is very ditsy. She’ll try to get out of any difficult conversation by just avoiding getting back to me etc…. The bottom line is, it’s easier for them to leave her in bed.
She has no quality of life imo, and they don’t seem to care. As long as she is clinically well, has no bedsores etc….. it doesn’t matter about her mental health.
I feel that a person with dementia can still lead a contented life, if their mental health is considered.

The way she is living is no better than a person in a prison. I really can’t see a difference.

Can you lodge a complaint anywhere? Report the conditions to social services?

It sounds awful. Your poor mum. Please do not let her stay there. Can you not take her home for a bit until you find a new care home?

I would move her ASAP. Poor woman has no quality of life. It would mean you visiting less but it would benefit her in the long run.

A relative moved their mother to a different home in similar circumstances to yours. They felt there was not enough actual caring going on. Your mum isn't an object to be periodically fuelled and cleaned. You don't need to be told that. It sounds like the staff or management bloody well do.

Is it better or worse now for you and her thank it was at home?

20 miles to the nearest nursing home would be my only option.
I always think what would my mum have done for me in this situation.
I know she’d have moved mountains because I was her daughter.

I honestly believe it’s your turn now and ignore all the negative thoughts that are leaving your mum in such a dire situation.

So you don’t like the home, but you don’t want to move her ? Seems like there is no answer then.

Is she a self funder? Can she employ someone to come in and see her every day?

I get the impression you are visiting every day, so understand why 20 miles is too far.

Can you complain to the Care Quality Commission? Since they have classified it as good but what your mum is receiving is not good.

20 miles isn't far for a better home! Can you name change and ask Mumsnet for recommended homes in your area? Some homes are specialists in dementia care and do a lot better than others in this regard.

What does the home say when you raise concerns with them? Have you told the management that none of her carers know her name and you are completely dissatisfied with this. I hope you aren't being as passive as you sound about her situation, you are her voice and her advocate.

The "only chair she could sit in" being broken is ridiculous. Perhaps you could at least provide a chair for her and ask very specifically that she is moved out of bed every day. Can she watch TV, does she understand?

How awful, can you visit the other care home to get an idea of what it is like? Def complain about current situation.

I assume she is council funded.

The quality of care she is getting sounds very poor (the homes I visit always call residents by their names!).

Can you bring yourself to complain formally? The home will have a complaints policy online but generally it will mean putting your complaint in writing to the home manager first, then escalating with local social services if you don't get a good enough response.

Do you have sight of her care plan? Ask the home for it when you go and compare the plan with the care she is getting.

Honestly you need to move her! 20 miles is nothing if she will be cared for and respected and will have some quality of life. You will be happier and just visit 3 or 4 times a week. Look round care homes in the vicinity, explain your mum's situation. I can't believe she's not even in a chair. The home needs reporting.

How awful OP. You sound like a lovely daughter.

Audio books?

Could she use an Alexa? Sounds far fetched but they can be great for people living with dementia. This obviously depends hugely on the individual.

Could she understand the idea of a lady called Alexa who is on an intercom/radio/telephone/insert familiar device from her past who will play music if she asks?

I've seen this done in a carehome and it can work for some people.

Not suitable for everyone obviously.

I really think that you need to move her or pay for someone to come and sit with her and do activities. It sounds horrific.

I’ll say from the outset I’m not a fan of care homes, having had plenty of experience of them. I do know, though, and have seen, that there are some brilliant care home staff (some not so good) doing their best with their fleeting interactions with residents and the time constraints on them, but for the most part there isn’t enough recognition that elderly people, with or without dementia, need more than 3 meals a day and keeping clean. They’re not all peacefully sinking into a comfortable ‘old age’ bubble. They are individuals, some of whom are really distressed, and will need the input that only extra staff (£££, so won’t happen) can provide, rather than the ‘jollying along’ or, at worst being ignored.

As a pp said, I don’t know if you are in a position to pay privately for someone to go in to the home as a kind of companion to your mum several times a week, to give you a break? I know that happens with some residents in the care home I now visit as a volunteer.

I would also agree that a care home even 20 miles away might be a better option than the current one. Referring to residents by room number is a rather large red flag, among several. Have never come across that before in any of the homes I have had any contact with over the years.

I really sympathise, and hope you find a way forward which is better for both of you.

I used to drive 30m (60m round trip) 2x weekly to visit my DM in her care home (not a nursing home).

Unless your DM has issues that you have not described, there were many residents there with similar dementia, mobility and continence needs who were always up, dressed and in the sitting room, dining room or garden, being fed and entertained by staff who knew their names, needs and preferences.

There are better care homes out there.

That sounds like an awful nursing home - it must be so upsetting for you, as well as for her. My dad was in a nursing home for nine years and the staff were wonderful - they'd all chat to him, tell him about their families and where they were from, talk about the news with him, they took him to play the piano, and he even taught some of them Welsh. He wasn't one for activities, but they made sure he wasn't isolated, even when he was very poorly. It wasn't a particularly up-market home, but the carers and other staff were all really committed to knowing each patient as an individual. It's so difficult when you have limited options locally though. Do you have many photos in your mum's room? Maybe if they could see more of the person she was when she was younger, they would make more effort to get to know her. When my dad was in ITU, I put photos of him with his family next to his bed even though he was unconscious and several of the staff thanked me.

Are there befriending schemes in your area? We had a lovely lady who went to see my dad once a week - she was from a charity called Age Connects (which I think is local to us, but there are probably others), and it did my dad the world of good to see someone other than boring old me. She

If you're not getting any satisfactory communication with the home manager - take it to the next level. If it's a company with several homes, there'll be another level of management - go there, go there today.

You email / write being as un-emotional as possible - broken chair for months, meaning your DM is restricted to bed only, no activities staff, the fact the home manager has not been updating you on how these issues are being progressed. You also ask for your complaint to be dealt with as a matter of urgency as the situation has been on-going for some time. You ask for time scales to rectify both - you expect the chair to be repaired within one week, and even though the home can't replace a member of staff within a week - they should have a timescale to recruiting.

Unfortunately this is the bite of a total lack of investment in social care, not being able to recruit and retain staff and a culture of money over people.

I've worked in several care homes and yes, sometimes we've literally just had time to give a bit of basic care to everyone because otherwise some people don't get any care at all. And lack of resources, lack of equipment and broken equipment were the norm. And yes, you can report until your voice and pen gives out - no one listens. It's why I no longer work in social care, there was for the most part, no time to give actual care.

I've never, ever not used someone's name to them or their relatives in favour of a room number though - except in circumstances where other people are present (usually residents) and it's to protect identify and dignity and it's what really you're supposed to do, and at handover where we need to be on hand for residents but also sharing information.

Eg "I need help in room 5 please"
"The Dr is here to see the lady in room 21"
"Room 16 had an unsettled night, family is visiting this afternoon"
You can't always ensure that there's no one around to overhear short pieces of information passed like that in a care home setting, but just not knowing someone's name (or making an effort and asking f you don't, are new etc, isn't on).

The home manager will be dodging your questions probably because they don't have any suitable answers. They know the chair is broken, they also know that they don't have anyone for maintenance and will be trying to avoid paying someone external to fix it. They know they haven't got anyone for activities and that the care staff haven't got time - and if they don't they need to get their arse out of the office and onto the floor and actually manage. But I've seen homes and management like this more than I care to remember.

Lodge a complaint with the CQC and local authority, especially about the chair - does your mum have a social worker? If she does talk to them. Unfortunately in order to get anywhere you're going to have to be 'that' daughter and make a fuss. And yes, look into the other care home, it might be 20 miles away but if it's better then your mum is happier and therefore you are too.

Oh goodness, so many replies! Thank you so much for taking the time to post.

To answer a few questions….
Can you not take her home for a bit until you find a new care home?
Unfortunately it doesn’t work like that. She needs a big care package, and we waited for 4 months before (when she was in hospital). Also, I couldn’t cope when she was at home. It was so hard.

Is it better or worse now for you and her thank it was at home?
When she was at home, it turned our whole lives upside down. Caring for someone with needs like hers is relentless when you have a family. I didn’t have the worry that she wasn’t being cared for properly though. Now, I just worry about her all the time. It’s not better for her or me, just different pressures/worries.

I honestly believe it’s your turn now and ignore all the negative thoughts that are leaving your mum in such a dire situation.
……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?

So you don’t like the home, but you don’t want to move her ? Seems like there is no answer then.
Thats quite a simplistic view. I wish it were that simple.

Is she a self funder? Can she employ someone to come in and see her every day?
She contributes her state and private pensions, then the council pay the rest. She is left with £25 per week, and we buy anything else she needs. Unfortunately we can’t afford to pay for someone to visit, but we visit her most days(and feel horribly guilty when we don’t.)

What does the home say when you raise concerns with them? Have you told the management that none of her carers know her name and you are completely dissatisfied with this. I hope you aren't being as passive as you sound about her situation, you are her voice and her advocate.
They fob me off, make things up and don’t take my concerns seriously. I asked so many times for her name to be put on her door. It took 4 months for this to happen. Yes, I have told them that they don’t know her name, they know I’m not happy.
I can assure you that I am anything but passive! I have been her voice since this happens, and I am forever battling to get her what she deserves.

Perhaps you could at least provide a chair for her and ask very specifically that she is moved out of bed every day.
The type she needs is around thousand pounds. (Pressure relieving, back tilt/leg rise)I don’t have that sort of money.

Could she use an Alexa?
She wouldn’t understand the concept, but I do play familiar songs on my phone, and we sing along to them.

for the most part there isn’t enough recognition that elderly people, with or without dementia, need more than 3 meals a day and keeping clean.
This is so true. They are individuals with individual needs. My mums mental health is not being considered at all.

there were many residents there with similar dementia, mobility and continence needs who were always up, dressed and in the sitting room, dining room or garden, being fed and entertained by staff who knew their names, needs and preferences.
This is how I expected it would be. Maybe nursing homes are different?

Do you have many photos in your mum's room? Maybe if they could see more of the person she was when she was younger, they would make more effort to get to know her.
Yes, she has lots of photos in her room, and she knows who everyone is in them. She has her wedding photo too, but there is just a lack of interest from the nurses/carers.

If it's a company with several homes, there'll be another level of management - go there, go there today.
They do have many homes. Thank you for your post, it’s very helpful.

Unfortunately this is the bite of a total lack of investment in social care, not being able to recruit and retain staff and a culture of money over people.

You’ve hit the nail right on the head here. I 100% agree.

The home manager will be dodging your questions probably because they don't have any suitable answers. They know the chair is broken, they also know that they don't have anyone for maintenance and will be trying to avoid paying someone external to fix it. They know they haven't got anyone for activities and that the care staff haven't got time - and if they don't they need to get their arse out of the office and onto the floor and actually manage. But I've seen homes and management like this more than I care to remember.
This is exactly right! The manager doesn’t bother to involve herself with the residents at all. She’s based at her desk, and that’s where she stays. I never get any clear answers from her. Your post is spot on. I am already ‘that Dsughter’ but I don’t care. Thank you for posting.

When Mum first moved in last year, they were relying heavily on agency staff. Different nurses and carers every day. No continuity at all. Earlier this year the company went abroad to recruit from two different countries. The people that came over have limited English, and I think this is a huge part of the problem in the home. Nobody communicates well, and this leads to confusion. My mum can’t make herself understood, and the carers can’t understand what she says. I think this is why they use room numbers instead of names, it’s easier to understand. Just feels so disrespectful.
I can understand that people think I should complain formally, but I really feel this is the root of the problem and there is really not much that can be done about the awful communication situation.

I think I have a big decision to make. It’s such a risk to move her, as she is mostly council funded, so I don’t have the choice of luxury homes! We could end up in the same position or worse, and we would also be miles away.

Thank you for all your replies. It really is appreciated. I will keep fighting mums corner.