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.

Yes, that's my concern now. There are 6 carers altogether, 2 separate ones who work together in the mornings Monday to Friday and the other 4 are all self employed but know each other and work together at times with other local clients. There are two 'main' carers who we usually refer to if we have questions/issues etc but no real management as such.

Could you manipulate your Dad to come away with you/your DSis for a few days? Take him to a garden show or to Tresco/Portmeirian village etc. that requires a stay for a couple of nights?
If your DM could go into a great care home for respite it might allay his fears. I see many partners finding a nice social life at my DMs care home but, without exception, when I chat to them they were adamant that their spouse was not ready for a care home.
In an ideal world we would find mum a lovely local care home

This person is very lucky to have you , it's a pity all carers aren't like you.
Minimum wage is a disgrace for what you and other carers do.
I am very grateful for my mothers carers and i would like to pass on my thanks and gratitude to you and the many other undervalued carers.

How many of you hold lpa for finances and also welfare,if it's 3 of you then how do you make decisions on her behalf , what does it say on the lpa forms

Good. So why does your dad talk about spending ‘his’ money on care for your mum? If it’s in her name and coming from her account?

what income does she have in her name?

with the LPA, you say it’s joint. Does that mean that three people always have to agree? Or can two outnumber one?

On the carers, honestly it sounds ridiculously complicated and I’m not surprised you find it hard to manage. But it also sounds like the basics are covered - she’s fed, watered, toiketed, kept clean, dressed and undressed, given the correct medication at the correct time. I’m afraid that’s generally what carers are there to do. ‘Enriching’ activities or exercise for people who are severely disabled and demented are generally beyond the remit of visiting carers.

If you want more, then it has to be provided by family, or someone paid specifically by family to do this - like the day centres or a carer engaged specifically for this. In care homes, single songs etc are happening anyway.

Does your dad care if your mum is bored? Does he think she is?

For you, you have to decide what you can sustain and stop there. You cannot provide entertainment to your mum all the time. Yes that’s sad, no she doesn’t deserve to be bored in a chair, but entertaining a demented elderly woman with very limited mobility is, bizarrely enough, a job for a professional. Someone who’s paid to do it because it’s hard and boring and takes forever for very little reward. I wouldn’t do it. The truth is that it appears that you are more emotionally invested in your mum than anyone else around you, and you can’t do it all. So either you pay someone using YOUR MUMS money, or she is left bored - but basically cared for.

We (dad, sister and I) all have poa (health & welfare and financial) but dad is listed as the main attorney.

Re:- POA, we are all listed, dad, my sister and I but dad is main attorney.

This is why I get so frustrated with dad when he moans how much money 'he' is spending on care, day centres etc because everything is paid for out from mum's accounts, her AA and pension. I point this out to him all the time but he sees mum's money as their money and as it's now dwindling he gets annoyed. He also worries if mum's savings are exhausted he will need to dip into his savings, I've told him that's not the case but he still stresses over this all the time. Twenty five years ago when my mum's parents died she was left a lot of money (mum is an only child) which they invested and I think my dad has become so used to seeing big figures in his statements that it now irks him because they are spending out so much money on carers etc. He believes because he's worked all his life they should be entitled to help, he says this all of the time. It's draining.

This is exactly why we have been pushing my dad for mum to now go into a care facility, she does far better at the day centre than at home, where there are many things going on:- there are the staff, other dementia patients, visual and auditory stimulation etc. She really does perk up during these times but dad can't see it, he simply says she is demented now and does care about this or that when I know that couldn't be further from.the truth. Take today for instance, I sit with mum every Thursday afternoon so dad can go out. When I get there you can almost bet your bottom dollar mum will be snoozing with the TV on some crappy day time channel, I will change it over to YouTube where I will find some music from.her youth (60's etc) and within minutes she is more alert and animated which goes to show mum is not sleeping, she is bored but dad just can't or won't acknowledge this.

There isn’t a lot you can do if your Dad is going to decline all ideas/offers. It is really common for people not to want to pay as they are concerned with maintaining hard worked for savings and being left vulnerable. It is also really common declining care home even in almost crisis situations. Do either of you have POA etc in case your Dad loses capacity

You cannot force it if the Dad is making decisions on his wife's behalf (unwise or otherwise). Decision making is left to him unless it becomes a safeguarding issue or extreme neglect etc

I mean all this kindly, but it might come across as blunt.

You need a plan, and someone needs to start acting like a responsible adult with this situation.

Carers are being contracted by someone. That arrangement should include clear expectations around what their remit is, and what the pay terms are.

For example;
Visits times. Essential activities in each visit. Additional activities to be covered through the week. Payment arrangements if the visits are shorter than planned. What are two person tasks and what are individual. Any house keeping or social stuff. That can go as far as ‘leave in living room with a film on’. I’d guess everyone has different expectations at the moment. Rates of pay, timing of pay can all be covered.

You, your sister, your dad and the carers need to be aligned on this. You may well have him saying they can go once the bare essentials are done.

Care plan. You keep saying social services aren’t interested. They won’t fund anything. You should be able to get advice on whats needed. That gives you, your dad and your sister a common reference point. Eg. Is it two person care. Probably not at this point.

You can have a mix of agency and private care if your self funding. Some agencies won’t be keen, but most will have clients where it’s a mix of family care and agency.

It sounds link youve got a fairly idyllic view of care homes and costs. Keep visiting local ones and talking to any friends with relatives in them. It’s important your comparison point is realistic on cost and provision. Day centre once a week probably has more engaging activities than a most care home do.

Another aspect to keep in mind is that shes your dad’s wife, it’s his home and daily life that’s being most impacted. Paying out for more help costs. It also is a very in your face way of saying that there are problems. A care home move is a very definite statement that it’s the beginning of the end. There’s probably more to it than the money.

Your mum sounds like shes being kept safe and well. So no one’s doing anything badly wrong, but this is now long term not short term and needs treating as such. You’ve got an ‘in’. ‘Mums situation has changed since she came out of hospital, so we’re going to have a review of the caring arrangements’. You, your sister and your dad sit down and come up with a plan and then implement that with carers. Winging it isnt doing anyone’s sanity much good.

(and you can probably reduce the overall caring hours, and swap that budget for a home visit a week of chair based exercise / massage / hair dresser).

There are 3 poa do maybe he can't make decisions without his 2 daughters being in agreement

That’s the most frustrating part, we know we can’t enforce anything and ultimately the decisions about mum’s life and welfare lies with our dad but it’s heartbreaking seeing your beloved mum just sitting at the same place day in day out, looking so bored out of her brain with very little outside stimulation - no one would wish to live like that. My mum spend most of her adult life looking out for my sister and I and I wish to do the same for her now but our hands are tied. Dad won’t even agree for us to move the living room furniture around so she can look out of the window and have a different view for once. He constantly puts barriers in the way.

He is her husband, not her owner or captor. Her best interests should be prioritised above his desire to control the purse strings.The house and savings belong to both of them. She is entitled to her share, and that's what the cost of her care should come from.

At this stage of her life, the priority should be the quality of her care and her quality of life. If better care, activities or enrichment would improve her wellbeing, that should come before protecting assets.

The wording sounds harsh….but it’s the correct solution for all concerned. I’m so sorry for this situation.

This!
I don’t comprehend why people save throughout their life but won’t spend the savings when they are needed for a better quality of life.

Why do you think he ultimately makes decisions, if you have 3 poa for her health then it's a joint decision between you all, whatmdoes it say on your poa form. Joint or severally?

Unfortunately social services are sods ..ok poor wording
They're so stretched financially that if a family are paying privately for care they're going to be happy they're not funding.
However, your mum has clear care and support needs as defined within legislation. Maybe say to Dad that SS assessment could mean you pay a lot less for more reliable care. If your mum has a financial assessment and remains having carers at home her assessed charge would be £100per week max! Plenty of money left over for activities then.

Also she's then 'in the system' so if her needs increase getting into a care home would be easier.

Good luck

Yes, I keep saying to my dad that we need a meeting with all of the carers, that mum’s care needs have changed since the carers were first employed but he won’t agree to it and doesn’t want us going behind his back either which is understandable but I can’t emphasis enough just how difficult he is. My work involves working with the elderly and I haven’t come across any as pig-headed as my father, he has always been very difficult.

SS have told me they have done all they can for now (I am first point of call for all of mum’s needs and liaise with most health advisors, medical staff and hospitals). Tbh, I’m not sure what more they can do for us. They have assessed mum and dad, spoken to some of the carers and the OT has come to their home and assessed for equipment needs etc. My parent’s home now has grab rails, anti-slip mats and outside ramps for the wheelchair etc. Once this was all dealt with everything was signed off. Dad was very rude to the OT which was deeply embarrassing.

Sadly, I don’t have an idyllic view on care homes, not quite sure how you have come to that conclusion. At the beginning of the years, following mums third hospital admission, dad had agreed to some respite care (has since changed his mind and dug his heels in). There were a couple of places which looked lovely and had been recommended on our local FB group but they sadly had very long waiting lists. The other three that I visited had a dreadful vibe and I and bawled my eyes out afterwards, awful places. I have never wanted to place mum in a care home but the reason we feel she may do better in one now is from other people’s lived experiences. I belong to many dementia support groups and whilst I acknowledge there are some horror stories there are also many people who tell me their loved ones thrived once they were placed in the appropriate home for their needs, that is all I wish for mum.

Sadly she is past the point of benefitting from massages, having her nails done etc. She has a hairdresser, I blow dry her hair in-between visits and used to do her nails etc, she hates that now and is visibly uncomfortable with it all so no point putting her through most of that. What she needs now at this point in her disease is visual and auditory stimulation and I can’t not see she is getting much of that at home with the current situation and as my dad refuses to pay out anymore for services then sadly it’s an uncomfortable stalemate situation.

I absolutely agree and this is my exact point and why I have clashed with my father on so many occasions over the years since mum became unwell. All that’s important is mum’s wellbeing, she is the one with dementia, she is the one who can not do anything for herself anymore, she is also bent over with osteoporosis and has breast cancer, she is not well and needs comfort and the best we can get for her in her final years. My dad seems to prioritise his own needs first yet he is the one who is fully mobile so can come and go as he wishes, he has no health issues and money to spend on what he wishes for himself. He is selfish and mean, I don’t want to drag out stuff I have written about in the past about him but to give you a flavour of what my sister and I deal with day to day a classic example is this:- my parents have single beds, dad said his was uncomfortable so treated himself to a new mattress but didn’t bother getting mum a new one because apparently ‘She’s never complained it’s uncomfortable’!!

He does this all the time, my sister said to him this week that it would be nice to change the furniture around in the living room so mum can look out of the window and see people going by again his answer was ‘Why? Mum never complains or asks to look out’, of course she bloody doesn’t, she can’t speak. He also said he didn’t want to do that because he likes where is recliner is situated.

This the battle we have all the time. He fails to have much empathy or see anything other than his own viewpoint.

Tbh, I’m not too au fait with it all but the poa’s mention all our names but it has dad listed as the main POA and my sister and I to become joint if and when dad either dies or becomes incapacitated for any reason. So ultimately that must mean dad has the overall say on everything?

Thank you but would they come to us again if they have already done the care assessment 18 months ago and an OT assessment 8 months ago? They gave me the impression they have done all the can for us and have signed us off.

It sounds like you are replacement attorneys, if you think he is not acting in h3r best interests you contact the opg. It would be a good idea to read the relevant pages on the poa forms as its your responsibility to act for her. If you think her needs have changed then you can ask for another care assessment. I'm not sure how much stimulation she'd get in a carehome, she may just sit in front of the tv in the communal room, a good carehome will have exercises, activities, an activity co ordinator. Does she have a dementia nurse?

When one spouse deliberately refuses to spend money on necessary care for the other, it constitutes financial abuse and neglect. This controlling behavior leaves the vulnerable partner without essential support or medical attention to preserve assets, which is a recognized safeguarding issue under the Care Act 2014.

I would have a chat to the local adult helpdesk of social services. Explain the situation to them and mention the words "elderly abuse" and say that your Mum needs a safeguarding intervention. Because sadly that's what your Dad is doing - he's making decisions for your Mum in HIS best interests and not hers. If you don't stand up for her, no one else is going to. If she is assigned a social worker, they should then be helping draw up a care plan etc for the carers to follow.

I really feel for you, your sister and your mum.

Have you tried Age UK or one of the other charities? I suspect this is getting more common so maybe there is way to force his hand. I would get advice form someone like AGE UK before you go back to social services or approach your father again as @squirrelchops2 alluded to, social services does not always provide the best service.

Or perhaps elder abuse is a possible route as @Victorius19 suggested.

I will get the poa forms from my safe later and have a good look through the wording.

The issue is that I don't think mum's physical care needs have changed since the SS assessment, in fact they have probably eased since she had her fall and was hospitalised so I don't think there is much more they could do? I will contact them again and ask for advice.

I feel it's now more about, as I keep saying, visual and mental stimulation. I appreciate most care homes consist of residents sitting in a communal lounge but surely isn't that better than sat on your own for hours at home with carers popping in for no more than 30 mins at a time, three times a day, your spouse sitting with you now and then and your two children visiting as much as they can? At least in a care home they have noise, movement, people visiting etc. Most have activities coordinators who arranged for various forms of entertainment several times a week or month (at least the ones I have visited do this). I know that none of us want to end up in a care facility but I do know I'd prefer that than to sit in my living room for the best part of 12 hours a day, most days with little stimulation.

Mum doesn't have a dementia nurse, she was never assigned one. She used to be part of the hospitals dementia department and they put on lots of classes etc but that obviously stopped during COVID and never started up again then our local hospital decided to discharge all existing patients and hand them over to the care of the GP services. I have just changed mums GP because her existing one was of no help and just kept telling me to put mum in a care home.