Should I move my mother to a different care home

[hangingplant742]

Hi there.

My DM has advanced Parkinson’s and mixed dementia (Alzheimer’s and vascular). She is still mobile when her Parkinson’s medications have just kicked in but is often stuck and frozen in a Parkinson’s freeze.She’s been in a home for just over a year. She could live for another 10 years or could die tomorrow type scenario.

I’ve never fully liked the care home she is in but we had to find something quickly nearby to me.

Last night I went to visit her (I go weekly) and was appalled at some of the things I saw. When I arrived she was shuffling around her room with her zimmer. She asked me to help her to the bed which I did. I removed her shoes and found her feet in this state. I was/am devastated. She’s always had excellent feet. She’s only 78 but has always had great foot and toe nail health. I asked her if she knew her nails needed cutting and bless her she just sort of nodded but didn’t seem too bothered. Her dementia has really ramped up in the last six months so she needs a lot more checking and prompting with things.

i went to find a care worker and asked them to check when was the last time my DM saw the chiropodist. They checked in the computer system and there was nothing logged since April. I showed them the photos of the feet and said I was upset. At this point they got a clipboard and checked a written list and said they asked my DM in June and July if she wanted to see the chiropodist and she said no. They said they can’t make her say yes.

i went back to my DM and asked her if she said no, and she said she just said no because she thought they meant do it there and then. She clearly didn’t really understand. I think the care staff don’t check her feet at all and didn’t know they were bad. The care staff are trotting out the ‘we can’t make a resident agree to nail cutting’

When I asked if a resident says no continually to nail cutting, do they just let the nails grow forever and they didn’t really reply. Just kept repeating that my DM said no.

My mum is increasingly in dirty clothes. I wanted to help change her into pyjamas and could not find anything suitable for her to wear. A care worker appeared and pulled out three pairs of pyjama pants from the wardrobe suggesting I put a pair of those on her. I refused because all three were stained yellow with wee at the crotch.

Her room has a basic ensuite with no window. It’s a bit basic but last night it was dirty. i asked for some nail clippers to attempt to improve her nails myself. They said I had to do it as they weren’t allowed to. I was crying and wretching whilst doing her nails. I could hardly get through the nails they are now so bad.

Then I wanted to wash my hands but there was no soap in her en suite and no toilet roll.

A few months ago she was found wandering in the steeets outside and had escaped without them knowing.

Last month they told me she made another resident fall over from encouraging the resident to walk faster (my DM is still fast when her medications make her mobile). They said they knew what happened because they saw it on the CCTV. I have had concerns for a while that they are understaffed. They told me they have 6 staff to 28 residents. I’m not sure if they include the care home manager in that ratio but evening and weekends particularly seem bad.

My dilemma is that my DM has very little money. She has about £160,000 left from the sale of her tiny house. Because there is no cap, she will pay almost all of her assets in fees. But when I have looked at other nicer places, even though she has enough money to self fund for about 2.5 years, they won’t let her move in if I don’t sign a financial contract to say I will pay the top up fees once her money runs out. I don’t have the money to pay top up fees indefinitely. I have two young children at home still and it will be a miracle if I can find money to find them through university and pay my own mortgage.

I’m working class and in a senior professional job - but I’m the typical squeezed middle now. My salary, although decent, does not go far.

My DMIL is also in a home and she also has only a bit of money. The state is going to ensure I have zero inheritance left, and I will definitely have to work full time until I’m very late sixties to afford a basic lifestyle myself. So top up fees are never going to be an option.

My DH and I have been single handily caring for our mothers for over a decade. We are exhausted and broken.

My question is - should I move my DM? Are my expectations of her foot care reasonable? Do other more expensive homes have better staff ratios?

I have a good neighbour whose husband went in one of the expensive posh homes and she said the care there was dreadful and she removed him after a week. So I’m also aware that even if I gamble, hope her money lasts her, and try to find her a place in a ‘posh’ home - it could still be lacking.

I am distraught.

Definitely will be doing this.

Who did you send your complaint to, did you contact social services, cqc and the home, have they acknowledged you are moving your poor mum and asked you for a date, outstanding fees etc. Will the new home be arranging travel for your mum. You will feel so much better once she's moved and the home losing a deputy and a manger at the same time tells you all you need to know, maybe others have complained too.

I just thought of something about feet, with my DM who has vascular dementia, it’s definitely a thing to get her feet seen too. She’ll often say no to the chiropodist even half way through. Sometimes the chiropodist has returned in the afternoon and has success and finished them . Other times there’s been a whole month with just one foot done.
So there may be a bit of this going on even n the new home.

Does the new home have a way of accessing her care plan online, I find this really helpful?

I doubt it, the new home might go and assess her to make sure they can meet her needs or will carry out their own assessments and draw up a new careplan. The old home should give them a breakdown of her care needs, history, medication, gp etc. and personal family info but if there's no manager I wouldn't hold out much hope. If OP has poa she can ask for a copy of the careplan.

Assessment by the new place people is happening tomorrow at the current bad place. I’ll be there too. I have everything ready to go and I’ll pull the trigger the second the assessment is done. I’ll be throwing things in the back of my car ready. I’ve lined up all ducks re: GPs, meds, meal times, NHS numbers, POA copies, address changes, bank statements. It’s not my first rodeo.

I’ve been dealing with the adult social care system for my mum for many years. I am not concerned about the assessment. The new place is better placed to meet her needs, and the new place is currently dealing with more complex cases than my DM. Who is complex. But she’s not violent.

I haven’t told my DM yet because she’s best kept calm until tomorrow afternoon. Her new room is held in her name. Then she’ll probably need sedating from joy when I tell her she only has one more night at the shit hole to manage.

When I’ve made a decision on something, I will execute it with rapid precision.

I also feel bad for the other residents at the bad place. It’s very scary to know that elderly people are so vulnerable. It scares me shitless to think that I might end up like my mum and if I have no one living locally to ensure I am treated well I can’t imagine how people survive it. My DM knows I’m outspoken and will really fight for her if I need to. But if you are a quieter personality type - I really do think the system can eat you alive. The system is designed to break the relatives and keep them quiet from pure exhaustion I think.

Well done OP! And honestly thank you for sharing. My Mum just went in for respite last year and it was awful, then we decided to move her home again under my Dad’s care. He is now not well so I need to find a home again for Mum. I know I need to go with my gut as you have done. Your last post about vulnerable elderly people really hit home as that was what I was seeing with my Mum at the last place.

I’m so sorry. Reading this, I can completely understand why you are distraught. You sound absolutely exhausted after caring and advocating for your mum for so long.

I work in care, and personally I don’t think your expectations are unreasonable at all. It isn’t simply about whether somebody can be “made” to have their toenails cut. With advanced dementia, staff should be looking at whether your mum actually understands what she is being asked and the consequences of continually declining. Repeatedly recording “she said no” without apparently recognising that she may not understand the question doesn’t seem adequate to me.

More importantly, somebody should surely have noticed the condition of her feet during personal care. Even if staff aren’t permitted to cut her toenails themselves, they can observe, document, escalate concerns and arrange appropriate foot care.

The dirty clothing, urine-stained pyjamas, dirty ensuite, no soap or toilet roll and previous episode of her leaving the home unnoticed would concern me too. Any one thing in isolation might have an explanation, but taken together I would be asking some quite serious questions about the standard of oversight she is receiving.

I also wouldn’t assume that a more expensive or beautiful home automatically means better care. Some relatively ordinary homes provide wonderful, attentive care and some very expensive homes don’t. If you do consider moving her, I would pay much more attention to what you actually observe than the décor: how many staff are visibly around, whether residents look clean and comfortable, how staff speak to them, whether call bells are answered, staff turnover, what happens at evenings/weekends and how they manage residents whose dementia means they refuse care.

Before making the huge decision to move her, I think I would formally raise everything you have described with the manager and ask for a care-plan review. I’d want to know how often her skin and feet are checked, how refusals of personal care are managed given her dementia, what happened after she left the home unnoticed, and what they are going to put in place now that her needs have increased.

Their response would probably tell me a great deal. If they are open, concerned and immediately put sensible measures in place, that is one thing. If they remain defensive and simply keep saying “she refused”, I think I would start seriously exploring alternatives.

And please don’t feel that because you cannot undertake to pay indefinite top-up fees you are somehow failing her. That is an enormous financial commitment and you have your own family and future to protect too.

I wouldn’t rush her into the first alternative home, but based on what you have written, I certainly wouldn’t dismiss your instincts either. I would be looking at other homes while challenging the current one at the same time, so that you know what your realistic options are.

You are absolutely entitled to expect your mum to be clean, appropriately dressed, safely supervised and have basic aspects of her health and personal care noticed and acted upon. x

Update. I have just been to visit her in her new care home after her first night. I could not believe the difference. When I collected her from the old place, she stank to high heaven of urine, her hair was like lard with grease, her clothes were dirty and food stained. I’ve just been to see her and they bathed her last night, and showered her this morning. She looked back to her normal self. Her hair was washed and brushed. They helped her use a little hair spray in it. She had deodorant on. Her clothes were clean. I could have cried. The care staff looked at me like ‘woah, it’s just our normal role’ The care staff all seem great. The place is very high end but I think the fact that the place is newly built helps. It’s purpose built so it’s designed to lower friction and pain points, and I can totally appreciate it and see it having moved my mum from a building that was an old coverted house. Simple things like the new place means staff have good visibility on all rooms on the wing at all times. The dining room is located so that all residents can access it easily. No one can escape because the senior carers station is next to the coded door. The natural light in all rooms is calming. The decor is designed to not over stimulate the dementia mind. I could go on.

There was a WILD experience at the old place earlier in the week. I arranged for the new place to carry out an assessment on my mum so that I could move her. Totally standard protocol. I gave the old place written advance warning. The old place refused entry to the assessor on the day, wouldn’t let me out, told me I couldn’t take my mother out. I had to call my husband to come rescue me as they were effectively holding me hostage. The assessor made a second attempt at entry with my husband and made it in. Then the carers repeatedly interrupted the assessment trying to prevent it going ahead. Some HR woman was heard saying f this and f that about us.

And then…. And I will never get over this next part. And then….two police men ran in with truncheons! The manager rang a 999 grade 1 call 🤯 I’m speechless. Grade 1 is basically for immediate threat to life eg shootings, stabbing etc. Long story short the police were appalled, it was a waste of precious police time and they told me that if the home tried to stop me taking my mother the following day I was to call them. The assessor said she had never in her entire career seen such stupidity from a care home. I absolutely did the right thing getting my DM out. I’m now trying to recover from a fraught and unbelievably stressful week. But I can rest knowing I made the right choice. Crazy.

Oh and I had to put 95% of my DM’s entire wardrobe straight into the tip. It was so urine drenched there was no saving any of it. I drove it directly from the care home to the tip. Then I had to spend £1000+ on a whole new wardrobe for her.

Thank you for all this wonderful advice. I did ask all these questions at the new place. I dug really deep. I watched, I considered, I didn’t hold back on outlining my expectations if I was to move her. The staff ratios are much better, they have a separate unit for complex dementia, they have great reviews. I know two people who work there who say it’s brilliant care. Time will tell of course. It’s a bit like choosing a school for your children - you never really know until your children start the school. But I think it’s going to be a huge improvement on the last place. And it literally can NOT be worse.

Oh and also, on day one when checking my DM in, someone accidentally pushed the alarm button in the room. This is not the normal call button. It’s the button for if I guess a carer goes in a room and finds someone deceased, or having a heart attack, or fallen or whatever. The speed at which three other carers burst into the room was impressive. And again the carefully designed layout of the building enabled the staff to get to the room in record time. Long wide corridors - perfect for a 100m sprint if required 😂

Sheesh, police involvement was crazy.
Hopefully Social Services do a full investigation going forward.

Glad your Mum is safe.

Oh my goodness .. I am so glad she is out of there!
She is very lucky to have you.
Wishing you and your Mum all the best .