Care at home, not sure if it’s the right care, so drained by it all.

[CateyeKate]

Sorry, this may be a long ramble and I apologise in advance but looking for advice or others lived experiences with this kind of thing.

My mum is 83 and has advancing Alzheimer’s. She lives at home with our 85 year old dad who does his very best but at the same time he is very stubborn and difficult to deal with (I have written about him in the past).

All was going ok (ish) until this time last year when mum fell in the garden, splitting her forehead open, dislocating her knee, breaking her hand and worse still, fracturing her neck. The doctors at hospital gave a depressing prognosis and we were expecting her to die within hours but she didn’t (poor mum has a strong will to carry on). She ended up in a hospital ward which was so detrimental for her dementia. She went into hospital fully continent but obviously there is no one to one care and because the smash to her head caused concussion she couldn’t tell them she needed to go so would let her soil the bed and then just clean her up. This was fine for them as they have staff on hand but it has been an absolute nightmare for us because she has been double incontinent ever since.

She was discharged a month later with an at home discharge care package for a month. This lasted two weeks and we had to let them go, they would turn up at all times of the day, sometimes not coming until 11am for the first visit then 11pm for the last, or coming early and putting mum to bed at 5pm and there were a few occasions when they didn’t turn up at all. We had to get mum’s previous carer in (she used to come every morning and help mum shower), she was happy to come back onboard but only wanted to do the morning visit Mon-Fri and wasn’t confident doing it on her own so we agreed she could come with a carer friend (I know this lady). So we then had to scrap around finding someone for an afternoon visit, evening and weekend care. Tbh, it needed to be done quickly and in hindsight we went about it all the wrong way, we should have gone with a care company but my friend knew a friend etc and so on top of the two morning carers we have ended up we a group of 4 other people who are all self employed but come together to work on occasions. They are all lovely people and whilst mum was bedbound and we genuinely thought she didn’t have long left it worked well but over the months mum started to pull out from this concussion type situation where her dementia seemed to have greatly exacerbated, she was able to walk (aided) with a frame to and from the bedroom, bathroom and lounge and was able to sit in her recliner chair in the lounge every day and that has now become her daily routine. The first two carers come every morning, toilet her, shower and dress her and take her to sit in her recliner. The next visit is around 2pm when two of the other carers come and take mum to the toilet and change her pull up (she has often soiled herself or needs the loo), then the same two come around 7.30pm, toilet mum and put her to bed.

My sister and I come round all the time and help with everything apart from the personal care.

Before this disaster mum was going to a day centre twice a week where she flourished. Dad is very tight with money (always has been) and hated spending money for this but after much perseverance we managed to get him to agree mum could go back once a week, my sister and I were very concerned how boring it must be for her sitting in her chair day in and day out. So she went back once a week from last October, the lovely ladies there come and collect her and bring her back. This gives mum a different change of scenery and dad some hours to himself. Sadly, in January of this year mum ended up in hospital again due to an infection, which they never did get to the bottom of so I fought to get her out asap to avoid a repeat of last year’s disaster. Dad made a big song and dance that she shouldn’t go back to the day centre as it was costing him so much (£100 per day) and as her dementia is advanced now she probably doesn’t take anything in (this couldn’t be further from the truth) and he’s already spending a fortune on care. Admittedly it does cost a lot - two carers three times a day is costing just around £1000 per week.

However, we have managed to persuade him to agree for mum to go back and over the last few weeks she has been going every Friday.

The problem is that we don’t think it’s enough to occupy mum. Apart from this once a week ‘treat’ she is still just sitting in her recliner all day, every day and imo, looking throughly bored, she sleeps a lot which dad says is because she’s unwell but when I spend time with her I put music on YouTube and she sings and moves her feet around, dad just sticks day time crap on tv (often the bloody news) then potters about the garden and house and pops his head in now and then and inevitably she’s asleep, I mean who wouldn’t in that situation?. When I’m there I do also try to get her in her wheelchair and in the garden (although that has been tricky with these heatwaves). The other day I got her onto her frame and walked her up and down the hallway and she seemed so lifted and was quite animated. Poor mum cannot communicate since last years fall and only says a few words so I worry constantly that she is frustrated yet can’t say.

The carers are all wonderful but being self employed they need as much work as possible and they seem to come in, get the job done and leave asap to go do their next job. They never ask my dad if there is anything else he wants help with or offer to make a drink or some lunch etc. My concern also is they often charge for an hours work when in all honesty they’ve only done, say 40 mins. Also the two how come in the mornings work the exact same hours yet one puts in the exact time she’s worked but the other rounds everything off to the nearest hour so we end up paying her more per month than the other yet they work exactly the same time. I know we need to say something but it’s awkward as they are friends of my best friend.

Is this all normal for care? It’s something way out of our life experiences and we are not sure if we should be asking for more? My sister and I want try a care agency because having so many fingers in the pie as such is quite exhausting. I have some carers requesting payment monthly yet others want it weekly, I did say the other week I wanted to pay everyone monthly but some made a fuss and said they only want to be paid weekly. Also one of the morning carers goes on holiday a lot so we are always having to ask the others to cover her. I don’t know what to do tbh, dad is elderly and gets confused with it all, my sister works full time and I have my own health issues I’m trying to deal with. It’s all so very stressful.

In an ideal world we would find mum a lovely local care home but dad will have non of that, he won’t even agree to respite care so I’m thinking do we stay as we are and limp long but then poor mum is just stuck in the lounge most days or do we get a care company in?

It’s all so so draining, mum was diagnosed 8 very long years ago. I truly hate dementia and the ripple effect it has on everyone.

I know that I need to do this. Can it be done without my dad finding out I've rung them because of he does it will divide my family and everything will be even more miserable than it currently is.

Thanks NorthXNorthWest

I will try ringing AgeUK today.

Absolutely, they won't drop you in it if you explain that your Dad will be very angry at your interference. They can just say they've had a report. When I worked in care, I did this several times when families weren't allowing someone's needs to be met because of money. It's sadly horribly common and always involves the male spouse not wanting to spend.

Her GP may also be able to help - I used to send an email to my Dad's GP when I had concerns and they'd get him to go in without saying why.

I haven't rtft, sorry, but...

Look into Direct Payments. It means you have a financial assessment but then you can choose care from approved suppliers at a reduced rate.

Contact local homes to see if they offer daily respite care. Some will let people come for days, either for fun or respite or as a taster.

Your local Carers Centre and AgeUK are good sources of help. AgeUK have a befriending service. They can also recommend people, such as a home help.

Contact your GP to see if you can get a physiotherapy referral. Or, see if you can get someone privately.

Meals-on-wheels is a great service if you have it. It's another person checking in every day, with a meal and a chat too.

A mobile hairdresser and chiropodist could also help to break up the day.

But how is your dad denying her what she ‘needs’? If she’s fed, offered drinks, kept clean and appropriately dressed, toilets and taking her meds, kept safe and warm and clean? I suspect that for an elderly, demented, severely disabled woman, who’s pretty much immobile and doubly incontinent, as long as all the above boxes are ticked then she will be deemed to be well cared for. No one is abusing her or neglecting her. Not being taken to a day centre, not having music played to her, not trying to get her to take a few steps with a walker, not moving her chair to face the garden - none of these are abuses. And your dad has no legal obligation to do them himself or to provide them otherwise.

i think the bottom line, OP, is that you can only control what you can control. So you continue to visit and do all these things with your mum. Sort out the mess of the carers, if you can, because it might made your life easier and your mums care easier to manage. And leave your dad to continue to do what he’s done all his life.

The only way out is if the wording of the LPA allows you to make decisions without your fathers agreement, or that you and your sister together can overrule him.

Yes, of course she has all of her basic needs being taken care of, my sister and I make sure if that, I'm not saying my dad has neglected her physically but she deserves more than simple, basic care. You may not think so because you don't know her like I do and you aren't seeing what she's capable of. My dad just sees his wife has left and has been replaced be a woman with basically, the mind of a young child but I still see my mum.

I'm currently sitting in her garden with her. When I arrived she was laying in her recliner looking completely zonked out and sleepy. The carers came and changed her and put her in her wheelchair for me, I've taken her in the garden, we are currently sitting under shade listening to the radio and she is eating a lollypop. She is smiling and tapping her to hands to the music. This is also how she is at the day centre. She may well have advanced dementia and is less mobile than she used to be but she also deserve to have continued, enjoyable lived experiences whilst she is living. Sitting in a chair 12 hair a day with little entertainment is not living.

I currently sit with mum three days a week and I gave up work two years ago to spend more time with her. Sadly I have had to return to working two days a week. Before that I was a PA for disabled people, I was the person who came to give respite for others. Just because those people are disabled both physically and mentally they too deserve care and experiences beyond being clean and well fed, my mum is no different.

I can't believe you are suggesting just because someone is in the advancing stages of a disease we should just leave them with very limited mental stimulation.

I’m not suggesting that at all. You clearly love and care for your mum very much, and she’s lucky to have you. What I am responding to is the suggestion by a pp that because your dad is not doing what you do, that social services will conclude that he is neglecting or abusing her in some way. There’s a big gap between what she needs to live safely at home and what you - as a dedicated and loving daughter - believe that she deserves. When SS do an assessment of care needs they are looking at the basics - fed, drinks, clean, toileted, safe from falls / harm / wandering, taking medication etc. Anything beyond that is ‘extra’ as far as they are concerned. Care plans don’t generally include lying in the garden listening to music with the client - they are all about the basics.

When you were a PA for a disabled person, who paid you? is this something that could be replicated for your mum?

Have you been able to check the wording of the LPA? Is there any way that you and your sister can over rule your dad and spend your mums money in a way that benefits her, even if he doesn’t agree?

Could she get respite care for a few weeks, and just not come home? That is very simplistic I know, but that's exactly what happened with my own late mother and it worked brilliantly. My poor Dad was terminally ill at the time with months left. We wanted to spend quality time with him. Mum had had a major stroke and was all over the place physically and mentally. Yes, carers came in a few times a day, but it was just so disruptive to my poor Dad that it just wasn't feasible.

But you guessed it, mum kicked up such a fuss, would not go anywhere, wouldn't discuss full time care, nothing. Her reasoning was "I am the one who is sick, there's nothing wrong with HIM" OMG that's how her brain was fried, and they loved each other to bits, honestly.

So, we arranged for a fortnight's respite. The GP got her in somehow, and we told her she was going on holidays. The Nursing Home had a full time place, but we fibbed and told her it was for a week. She never came home in the end, and honestly, she thrived there. We had time with Dad and he died six months later.

Horrible time, so I know exactly how awful these situations are. Bless you and your sister. Your Dad needs a dose of reality, but that won't happen, just like with my mother, at least she had post stroke mental issues, but your Dad is fully compos mentis. I am reluctant to say anything bad about him, but I am thinking it!

That really is what my sister and I are kind of leaning towards. We tried to persuade dad to accept mum going into respite for a couple of weeks after she came home from hospital, initially he agreed, we started looking at places then he backed off and started saying how bad all care homes are and he didn't want mum in any of them,.even though we only looked at 3 together.

But unless it's a day that my sister or I sits with mum our dad's life is very restricted, he can't just go out and leave her alone and he constantly moans he may as well have dementia because it's tied him down too. I totally understand that and can see how dreadful must be when your spouse is no longer living with you but I try to see the positives of not only mum having people around her all the time and hopefully good care but it would give my dad somewhere to go and visit several times a week, he loves to chat and would have the staff to talk to and hopefully even befriend some other spouses who understand what he is going through. Both my parents lives are very isolated, none of their friends come and visit anymore (except fory mum's lovely life long friend). They have no one other than my sister and I.

I think that means that you and your sister are "replacement attorneys". So yes, when your dad dies or loses capacity, or when he decides to hand over the responsibility, you and your sister will then be joint attorneys.

DH and I have a similar arrangement. We are each other's attorney and our DCs are the joint replacements.

HRTFT but the carers you employ will be very aware of Moving and Handling assessments. I'd be questioning why they haven't mentioned this. If I'm being cynical I'd say because they know only 1 carer is required.

Hope you get things sorted 💐

I do sympathise with your dilemma and agree that probably both your DM and DF would have better quality of life were you able to get her in a home that he was able to regularly visit. But that's going to be a mountain to climb right now. I was thinking about why your DF might be so resistant to the suggestions you and your sister have been making. I know you think he's selfish and unfairly concerned about costs involved, but might there be some other "real" reason that he's justifying by using the reasons he's now giving? It may or may not be that he is seeing a move to a care home as a finality. But it may be that he and your DM have been living together for so long, that even with her in this state, she's still there with him. Were she to move out into a care home, he would be alone. Even the carers wouldn't be coming by. I know this doesn't fully explain his reluctance to let her go to day care events or his refusal to move furniture, but perhaps you do need to factor into your re-evaluation of your DM's needs, a consideration of what needs your DF has both now and should things change. I've no suggestions or solutions, but was just thinking about it from his perspective.

FIL was hugely resistant to MIL going into a home, even when it was clear that she couldn’t be cared for safely at home. Like the OPs mum she had severe osteoporosis, left doubly incontinent and immobile after a prolonged hospital stay, advanced Parkinson’s and dementia. FIL was a terrible carer, despite clearly feeling it was his responsibility. Didn’t made sure she took her meds, let her get completely dehydrated to the point of delirium, wasn’t able to help her shower or toilet properly, etc. But his guilt kept him at it - and he was constantly relying on / pressurising SIL to do the donkey work. It was a grim time.

it’s makes these situations very hard when the law / convention deems that the spouse should be the primary carer / decision-maker, irrespective of whether they are actually capable of doing this well. It was always FIL that the nurses / GP contacted or spoke to - he was mostly incapable of understanding or remembering what they told him. He was the one saying Yes, bring her home after being in hospital without a clue of what this would entail - having a hoist installed, a hospital bed, carers coming four times a day, and like the OPs dad, he would be unable to leave her alone between carers visits. In his case he just couldn’t visualise it - and when he did, his assumption was that SIL would do a lot of it. But, again like the OPs situation, FIL was the primary Attorney with DH and SIL as replacements. DH spent many hours explaining and re explaining the situation to his father, to get him eventually to be the one who said that No, he couldn’t care for MIL safely at home - and she went into a great nursing home where he was able to visit her.

My dad definitely feels a strong sense of responsibility to keep mum at home and I know he just can’t imagine mum anywhere other than at the house they have shared for the last 55 years, my heart aches for him over that but the reality is without a huge amount of intervention from the carers, my sister and myself my dad just would not be capable of looking after mum’s full wellbeing at all. I am first point of call for everything, always have been, I do all their admin, liaise with all medical staff, order and arrange all of mum’s medications, attend all legal and financial appointments with dad, change sheets, wash and change towels, my sister does the remainder of the housework. Sadly, none of these things would get done if dad didn’t have the help from us, I once left the towels in his shower room (changed mum’s in her bathroom) just to see if he would notice and they were still there a month later, he also never even so much as wipes his toilet seat over, everything is a mess. If none of these things were done by us they would never get done.

He just doesn’t see the things that mum needs in order for her to be fully looked after. He prefers to spend most of his day in their large garden during the summer, never once thinks to bring mum in the garden with him (carers can easily get mum out there in her wheelchair) to give her a change of scenery, he thinks that popping his head in the lounge several times a day to make sure she’s ok is adequate but it really isn’t. She never asked to get dementia so why should she be left isolated.

I know that he would and will miss mum terribly if she needed to go in a home but I just can’t let mum’s future care fall by the wayside and place dad’s feelings first, I’ve been doing that since 2018. I appreciated his needs and have bent over backwards to accommodate his feelings these last 8 years since mum’s diagnosis.

I have contacted SS and they say they will get back asap, so we will see what’s happens next.

One of the things that sticks out is that your Dad is deciding who does what. He doesnt want to spend money because he is worried he will run out if he needs to go into a care home.

Like many many older people they become dare I say it very very selfish. You need to take some control of this. This could go on for years. Have a good review of exactly who is coming in,times and cost and put on a spreadsheet. Often writing something down like this gives some clarity.

Take back some control would be my advice.

I found when I moved parent to care home that their old house was bordering on a death trap and like many many old people the house electrics, boiler, decorating etc were hanging by a thread. They just cannot face doing anything so it just gets left.

Oh gosh OP, I’m sorry you’re going through this. Dementia is absolutely awful. I’m an OT and can recognise many of the issues and frustrations that you have expressed.
Social services are likely to decline any involvement right now as your parents are self funding and your mum’s basic needs are being met. She is clean, fed, has appropriate adaptations to support safe mobility and manual handling, she lives in suitable accommodation, she is not showing any distressing behaviours (such as wandering etc). There is no evidence from what you’ve said of any abuse that would warrant a safeguarding. I absolutely agree that mental and social stimulation is vital for well-bring, but social services are not going to see her current situation as a risk that require action. There are likely millions of older people with dementia out there who spend all day everyday sat in a a chair staring at the TV or at the wall.
Regarding your dad, I have met many partners like this over the years. Money is often a big concern and preoccupation. The sense of injustice that they must pay when they’ve paid NI all their working lives is huge. But equally, your dad will feel very strongly that your mum’s rightful place is in their home, where she’s always been. Why wouldn’t it be? He’s not seeing it the same way you do and never will because he’s her husband. This is only likely to change if there is some kind of crisis and his hand is forced.

What I think you should do:
Sort out the care situation. You are being taken for an absolute ride that is costing you a fortune and I’m appalled on your behalf. From what you’ve said, right now your mum can be safely cared for by one carer. Their driving / commuting issue is absolutely not your concern.
Contact some local reputable care agencies and get them to come out and do an assessment. Then stop the current arrangement and start a new package through the agency that you are happiest with. Your mum needs a care plan. Your current carers are taking you for a ride.
Once you’ve changed the carers, you should have additional money as they will be doing less hours. With this, you could either allocate some to additional carer hours specifically for stimulation, so taking mum out into the garden, out into the community in her wheelchair, or even just putting in music for her and giving her a hand massage (a hand massage with lovely scented lotion is wonderful at whatever stage someone’s dementia is). Or, you could arrange for her to go to the day centre on additional days. That means that when she is home, it won’t feel as awful leaving her unstimulated.
I know your dad is likely to push against these changes, but all you can do is persevere in trying to explain as firmly as possible why it’s needed.
Regarding local services, please do reach out as there may be more out there than you think. Certainly ours have slowly increased post covid and our memory service has groups etc.

There are lots of people on this thread who are pushing for social services to do something but I really don’t think they will. Coming from a place of lots of experience of being the one completing safeguarding forms, this would get closed down straight away.

Good luck

Great post, brings it all together.

No advice but solidarity, as MIL and FIL are in a near-identical situation and the stress of it all is making DH ill.

Hi OP.
I was just reading through the last few posts and what really struck me is how absolutely tuned in you are to your mum's well being. Where you mention she could spend time in the garden but your dad doesn't think to take her, just puts his head into the lounge to check she's OK is such a visceral picture of her life.

It sounds like your dad doesn't understand her well being beyond it being that of her basic needs being met ie she is safe, fed and watered. He doesn't seem to understand she is entitled still to have all her other needs met...relationships, belonging, mental simulation, achieving things and importantly she has choice for example.

I really feel for you. As others have said unfortunately it sounds like your father will only see things when he's forced to after a crisis.

I know this sounds awful but what if you withdrew completely so he has to manage it all, which you know he won't. Would that force his hand?

I truly wish your mum and you all the best. Oh, finally have you looked at some support for yourself. There are good carers groups out there or forums etc.

How about a baby step.

If doesn’t need two person care, then change the time slot for one of the carers some days so that theres an extra hour of someone there. Do it for a fortnight as a trial.

As for the meeting, it doesn’t need to be with all the carers. It’s you, your dad and sister. Working out what want from the carers. Frame it as getting his moneys worth.

I’d be stepping right back. The time has come. There is no better use of your parents ‘susbstantial savings’ at this point than 24/7 care for your mum. Without your input this is what would happen pretty soon.
DH and SIL refused to contribute to MIL care despite FIL expectations. She went into care within a month and they’re now both back enjoying worry free holidays, sleeping well and have reclaimed their freedom in the prime of their lives with their partners and children. As it should be.
FIL is not happy. That’s just unfortunate.
Your needs out trump your father’s wants. Withdraw your input with your sister, let a crisis develop and reclaim your life.
I hope I don’t do this to my children. Dreadful.

Thank you so much for your reply, it’s really frustrating when I get so many people telling me to get SS involved, I know people are trying to help and maybe they have had more success than us with SS but I personally haven’t found it to be an easy thing, as you have acknowledged. They have been round several times but are not at all interested once they discover my parents have substantial savings, they say there is really very little they can offer. They emailed to say they will call this week after I have messaged them so we will see what they say, I have my doubts they can help at all.

I have contacted a lot of local services and there are many activities such as dementia cafes and singing groups but the issue we have is often due to many being held in the morning, often 10am and mum is not good in the mornings at all and sadly she is also double incontinent and can go with little warning, this makes going out anywhere very challenging as it’s difficult getting mum clean in the first place (she resists when her pull ups are removed) let alone in a tiny public toilet (these groups are often in local village halls etc). Before mum became double incontinent we would take her to many places (cafes, garden centres, groups in our village) but this has really created a major challenge for us.

I really feel for your DH. I have my own health issues which have greatly exacerbated due to the constant stress, it really does make you very unwell and it is near ending. This has been going on for 8 years now.

I just can’t withdraw completely especially as I live literally around the corner from them. I am already unwell from a few health issues of my own and the guilt would make me very unwell.