Elderly care issue?

[ThatsNotMyCherry]

Hi
My gran lives in assisted care home and my mum does a lot of stuff for her (laundry, cooking etc) while I help out with admin.
My gran has recently fallen a few times but luckily had no serious injuries. She goes to the bathroom twice at night. Every time she calls the night carer they take 1-1.5 hours to come. By this point she’s really struggling so often just gets up herself with great difficulty and then the falls happen. She has told us if she calls the carer a second time at night she’s always in a very bad mood with her so sometimes she doesn’t bother. We have begged her to wear incontinence pants but she refuses and insists on using the toilet. We have asked if she wants to us to mention the delays and attitude of the carer to management and she says no because she’s worried the carer will be more difficult. She doesn’t use up all the time that she pays for but clearly has a need for help in the early hours of the morning. We have approached the carer politely about it and she said she has other people to attend to so it takes her an hour or more.
We can’t see any way around this. Do we just let this carry on and hope that she doesn’t have a fall where she’s seriously injured?

Does she use a walker? If not, would one be useful?

Yes already using a walker but she still has falls despite it

You may find that the overnight carers in situ are for 'just in case' senarios rather than care/regular assistance needs.

Presumably there are care staff in situ during the day- or does she have carers come in from outside?

There comes a point that her needs excede the 'baseline' provided then something has to change.

Could you ask for a night carer? This poor lady's dignity. No one should have to wait that long for the toilet

Hi Op
My Nan had this problem, lazy staff. They seem to prefer to let the elderly fall down or wet themselves than actually respond to a call for help.
Have you thought about using a covert cctv camera....
I’d definitely speak to the care home manager or possibly look at another home (if your nan would move)
I imagine she may need to move at some point if her condition were to worsen...?
My auntie was in a lovely care home, 24/7 staff that would check on the patients routinely, have a laugh with them, but she was very ill with dementia.

Day time care isn’t an issue. There are a few carers around during the day. They have scheduled regular visits throughout the day and if she needs assistance to go to the toilet and rings for them they come fairly quickly.
I don’t think the council will provide a dedicated night carer.
This is actually one of the best homes in the area, it’s just that carers can be variable and it seems like the night carer is either really overstretched or is not doing her job properly.

I wouldn't be surprised if the night carer is overstretched (and underpaid) unfortunately. Definitely talk your mums situation through in detail with the manager, sounds like hes just been fobbing you off so far.

They might need to take on more staff, which of course the shareholders will resist, but formal complaints are expensive to deal with too!

When were her Parkinson's meds last assessed? Hallucinating at night is a feature of Parkinsons as is getting up at night - it sounds like she needs to see her neurologist again and have her meds adjusted.

However ultimately if she has higher night needs than can be met where she is now, then she needs to be in a care home.

@ThatsNotMyCherry
Residential care, you usually have a bedroom with space to sit, quite often en-suite shower these days but not always (depends on the home) it also usually has access to a larger assisted shared bathroom if needed but no living room or kitchen
Although there are communal facilities for living and dining and usually somewhere for family to make cups of tea etc
The facilities can vary wildly from home to home as the 'residential care' bit refers to the level of carer support available but that's a rough average.
It can be very location dependent as to what is available and how much it costs.
My GGran In law is in a beautiful lovely place with loads of facilities and a great location that although expensive is quite reasonable when you compare it to the ones I've been looking for my mum (dementia at 70), several made me cry they were so miserable and shit and cost nearly twice as much as she lives in an expensive region.

It's such a shame she cant be persuaded into using incontinence products as it could help alleviate so much stress ... if she has full capacity it might be poss to reason with her about more care being required if she doesnt use them, and nearly everyone over 70 is wearing them ...

Even in care homes and esp homes for people with dementia, as the illness progresses, they might not understand the need and as they withdraw into a world of not the here and now ... some people pull off in incontinence pads even before soiled and the beds likely need changing multiple times - however hard this is on the staff, this is their role to ensure people are cared for ... sometimes again people in their own world may not be able to understand they are wet or soiled and that clothes or bedding need to be changed and get anxious and lash out.

It does sound as if the condition is progressing beyond the level of care being provided and for her own safety a Care Home with a dementia focus for early/mid would be worth considering before things get too severe and say she falls breaks a hip and potentially goes straight to nursing home.

Good luck

It sounds as if your Gran should be in a residential care home.

Could she be assessed by a continence specialist? In my area there is a dedicated continence nurse and she would work to reduce the need to get up at night - there’s medication as well as pads etc that can reduce the need to wee. Getting up twice a night means that her sleep is really disturbed which will affect her physical and mental health. Many people suffer in silence because they think it’s normal/unavoidable - it’s not!

We have been through something similar with my nan, who is now in a residential care home. (not just assisted living). Given her diagnosis, I'm surprised they recommended only assisted living for you nan 18mths ago. Especially if the facility doesn't also offer higher care in another section of it. Unfortunately, as I'm sure you are sadly aware, Parkinsons isn't curable and will no doubt get very much worse. This can happen gradually, or in progressively worsening steps, especially after an illness or fall. There is no excuse for taking an hour to answer a call bell, but in the assisted living places I'm aware of, they are only used in an emergency- not for someone needing your nans level of care.

My nan was living alone, in her own house, but also having falls despite having a commode. In the end, my mum was doing her washing, we'd cook meals for her, take her out, wash her and was there daily, which just became too much. How is your mum coping with the additional tasks she is doing for your nan?

Other than falls and having someone there overnight, a big part of moving her to a care home, was so that she would be familiar with the rooms and facility before her dementia got worse. Yes, the move was difficult for her, BUT, we are happy she is settled and has the care she will likely need in the coming months.

I'd recommend looking into a specialist belt she can wear which helps prevent hip fractures during a fall. I'm unsure if you need a GP,
occupational therapist or physio to advise, or whether you could just buy one? I too would speak with the manager where she is to see if the care being given, really is what that facility normally provides.

Thank you everyone. My mum is coming over in a bit will discuss with her the need to have an assessment of her needs.
With the medicines I need to check with my mum but if my memory is correct then she’s now at a point where they can’t increase the dose. They did try another medication but it didn’t suit her. For the incontinence I’m pretty sure they’ve tried stuff too but I can’t remember why it didn’t work or had to be stopped.
My gran has certain traits like stubbornness and a fixation with cleanliness which complicate things like moving. My mum feels guilty for moving her (she left behind a lot of friends in her sheltered accommodation building and hasn’t managed to make friends in the assisted living place as most people have dementia and are not totally with it mentally). I think I will have to convince my mum that this is better for her, even if moving isn’t ideal at her age. I hope we can find somewhere nice for her where she feels comfortable and she can at least have a private bathroom. We all really hate the idea of her being somewhere really grim like some of the places we saw. I think my mum is also daunted at the prospect of fighting with social services again to get her a place. I think that’s something I will have to manage to the extent that I can. My mum was talking about going every day at 5am when my gran wakes up, I don’t think that’s right as she’s not exactly young herself and she has her own health issues to deal with.

@ThatsNotMyCherry, I work as a carer and i would say that your nan needs an re assessment due to the falls she is having .An hr is not an acceptable wait .If your nan is stubborn as you say then even if you do eventually use incontinence pads would your nan still be getting up in the night because she is so determined too .
It does really sound as if the supported living cannot offer the level of care your nan needs at night regarding her falling .
I know it is really daunting having to discuss care with the council i had to when we set up my dads care and i found it hard and i have been in care 20 plus years but you need to be persistent and factual with them .Your nan is at real risk of a serious injury.
Please don't let your mum go at 5am i know this sounds hard but if she starts it the council will happily let her continue and if she has health problems this isn't good .
Have you got a sympathetic gp who can help with the council or a consultant to back you up .If you can arrange a meeting with the council take a friend or partner for moral support but stand your ground sadly with social care you have to fight really hard but your nan needs that help .An OT can come out and do an assessment but it does sound very much like your nan needs more care at night if she continues to get up and fall .Good luck

If she is hallucinating/ getting up at night, they may actually need to decrease the dose so it is still worth getting her meds reviewed if she hasn't been seen in a long time.

@Hearthside That’s the hard bit, fighting with the council. My mum was just telling me that when my gran lived in sheltered housing and they were fighting for an assisted living place the council kept saying saying she must wear incontinence pads even though we told them she won’t. Even if we managed to put them on her that’s not going to stop her wandering off to the toilet. The only way to do that would be to tie her to the bed! Despite that they kept saying well other people do it, so should she. I don’t know what they were expecting us to do.

It's really tough not only the care side of things but the battling with social care.
My mums social worker drives me mad and she's not very good (my DH calls her a wet blanket) but if we push hard enough for long enough we do usually get somewhere with her. I don't want to move mum away from familiar faces and places as she no longer lays down new memories so moving would be extra hard for her to adjust.

We moved GGranny this year and she's 97, she's not happy but that is her default position on anywhere outside of London as she didn't want to leave however we just couldn't provide the support she needed down there especially whenever anyone visited they weren't allowed to stay in her house. She's physically frail with continence issues but still fairly sharp.

The one thing I've learnt about the social care system is persistence is needed oh and shouting loud so you can't be ignored.

@Hepsibar : I'm assuming that you are a long way off 70 given that you think nearly everyone over 70 is wearing incontinence pads/knickers🤣🤔

Hope you get your gran sorted out soon OP.

It may be that she needs to reassess her needs particularly if she’s falling regularly. It might be they this is not suitable for her anymore and she needs something with people around all the time if she needs them. It may have been great when she was totally mobile but now her needs might be changing.

This place she is living sounds like the worst of both worlds, a small room with few facilities and people with dementia she can't make friends with but your mum is doing so much to help her and she is not getting good care at night.

Asking someone who isnt incontinent (and if she is able to use a toilet or commode then she isnt) to shit themselves to suit a timetable is appalling.

Do those twunts from the council have children or pets? Do they expect them to shit to order to suit every other fucker or to suit their timetable.

From what you've said OP, it sounds to me that she is far from incontinent - she just needs a timely hand to get safely to and from the toilet at night.
To try and manage this by putting an old lady in incontinence pads/knickers is an absolute disgrace by those who should know better. (Not directing this and you and your DM OP).
It's a bit like a reception age schoolchild having a toileting accident at school and the parents being instructed that they must send the child to school in nappies in future.

Does the home manager know about the camera in her room?
If not, it may be helpful for your DM to let him know it's there and that your DM is checking on it daily.
It may focus some minds.😉

X post @HelenaDove.
I hope when the time comes, you're in the next bed to me in the care home!