People who give up there lives to care for elderly and unwell parents, just how do they do it?

[Backtothe80splease]

Sorry, long thread but I'm feeling so very guilty.

I am 51 suffering from anxiety, depression, chronic health issues and am in perimenopause so I'm probably being too sensitive but I've been torn to strips on a local FB and have not slept last night because of this.

My parents are in their early 80's. I have always been close to them and they live just around the corner. Until 2018 they had a golden life. They have lots of money, until recently had good health, they were always out and about and loved life.

However, mum was diagnosed with Alzheimer's in 2018 and 6 years on, as expected it is getting worse. She is also bent over with osteoporosis, has a pacemaker and this year was diagnosed with breast cancer (controlled with medication). My poor mum has really taken a battering with her health.

My dad is not a natural born carer and as I only worked part time I have slowly found myself doing more and more for them to the point that I am round 4-5 times per week and at one point I was doing everything. I started a thread a year or two back and upon advice I did step back a bit, we got a lovely carer for mum so she has help showering and getting dressed in the mornings. Dad was very opposed to this originally but now says the carer is a lifeline for him but he still refuses more help in the evenings or at weekends! I also take mum to a day centre two afternoons per week to give dad a break but it's not enough. He is complaining more and more that he is struggling with mum especially as she is starting to have a few (albeit sporadic atm), toilet accidents.

To be honesty, we are all frazzled. Both my sister and I have chronic health issues which have become worse during this time of great stress and dad is very low and although he has always been cantankerous, the stress is making him worse and we often snap at each other. I also have teens at home and a DH. DH and I argue a lot recently as he thinks I do far too much for dad especially as my father is very well off and tight, he often refuses to spend out for things to make their lives easier. He has squirrelled all their money away in investments for a rainy day but he can't see that their raining day has arrived.

Anyhow, dad and I had a conversation the other day after mum had wet herself in the car. He said he can't cope. I have suggested live in care as they have the space and money but he says he does not want people in his home. Fair enough. I don't want to see mum in a home but I am not 83 years old and living with her 24/7. So I have suggested in the new year we look at some local care homes and maybe start with respite and go from there.

I have asked on our cities' FB group for suggestions on good local care homes and I have had lots of great replies. However, I have had a few women tell me that all the homes are awful and they wouldn't put a rat in them. One has gone so far as to bombard my post with comments to me (and others) saying we have no morals by allowing our loved ones to go into care and that she will give up her life and dedicate it to looking after her father when the time comes. She claims to hav decades of caring experience in homes and says they are all dreadful places. She has told me I'm a pathetic creature, that I have no clue and we are all trying to justify our decisions to put Lo's in care.

Tbh, her replies have devastated me. I don't want my mum going into care, it's the last thing I want for my lovely kind, caring mum but how can I override my dad's decisions even with POA, he lives with her. I can not dedicate my time to care for my mum all the time, I'm at rock bottom as it is. I am at my lowest seeing my parents struggle so much, dementia is evil. This woman is making out that I have no compassion for my mum, that I'd just shove her in the first home I come across. That couldn't be further from the truth, I would research and research until I found the right one.

Now my ds girlfriend has said she has worked in a few of the homes and they are indeed all awful.

What on earth do we do? I hate this, it's destroying us all.

I'm sorry you are facing this @Backtothe80splease (i wouldn't mind going back as well)

I started the elderly parents section on mn about 13 years ago as i was going mad with it all.

If you don't get the answers here, have a look there. All the best.

Please ignore the nasty comments. They probably have no idea of the true reality.

Do what’s best for your parents and family.

That sounds so hard OP.

There are two examples in my family where someone has made huge sacrifices to care for someone else.

In both cases, the situation got worse over time & the carer gradually gave up more & more of their time / energy to care for the other person then didn’t know how to extract themself from the situation.

In one case, by the time the person being cared for had passed away, the carer’s own health was destroyed so the carer never got to enjoy their own retirement.

This is why I am insisting everyone in my family prepares for their future.

The care homes she has worked in are clearly poor because dreadful women like her have worked in them. There will be some great ones too.

I have up my job to care for my mother. I had to give up my home too and move in with them. I'm really glad I was able to do so. It would be a lot harder now that I have a husband and children though.

Generally speaking, it's a bit cruel to dump loving parents in an old people's home and never visit or support them.

But to put those parents in a home because it's safest for them and because you still need to work and so on, and to visit regularly? Not in the least bit unkind.

I suspect that people who condemn others for putting loved ones in a care home have never cared for someone at home, or at least not someone with dementia and double incontinence.

It's very, very different from doing it for a job, when you get to do your shift then leave and relax at home. It's like having the hardest aspects of a newborn and a toddler, but at the same time and potentially for years on end.

No care home is perfect. If you're able to visit often and at varied times of day, it will enable you to better ensure the care is good. Please don't listen to that nasty troll though. Noone I know who has actually cared for a loved one at home has that attitude.

The reality is some homes are awful some are great and you've said you will research it so you will be able to pick one that suits your mum. So stop listening to people who are not loving your life when they tell you what to do.

Opinions are like arses, everyone has one and sometimes they are not that pleasant.

We have teen and early adult children one of whom is autistic, and we both work full time. We also have elderly relatives that we love (but who didn't provide lots of childcare for us in case anyone is about to make that point) and we do what we can for them. We see them about three times a week, take them out, DH manages their finances etc. but that is our limit and we are clear on that. So they have carers which they don't like but the alternative was us going round twice a day so we just couldn't do it.

DH's brother witters on about how much he loves these relatives but he does nothing for them except occasionally taking them out for tea. So when he has a view on what would be best for them we just ignore it - if you don't help out then you don't have a voice.

I guess my point is that you need to work out what you can do, and include what your family need so if you DH thinks you spend too much time there does he have a point?

As a family we recently had to put a relative in a nursing home. Bedbound person very frail and in and out of hospital. Even with full time care package plus family, we couldn’t secure the medical care and painkillers etc needed to keep relative at home.
Local GPs absent and uncaring. In comparison nursing home had relative in state of the art bed, attending GP twice a week, sorted all prescriptions ( which we were struggling with after five hour waits on phone to local GP, then they were wrong, then pharmacy would muck up the MAR chart so carers couldn’t even give paracetamol etc etc).
Relative was better looked after in nursing home than had been in hospital - with staff both carers and on- site nursing and tissue nurses highly experienced in care of the frail. Relative was kept comfortable and passed away much more painlessly and having been cared for with compassion - far better than the alternative at home or in hospital.

So sorry you’re facing all this, OP.

Both my DM and my FiL had dementia, and there came a point with both when 24/7* care and supervision were needed - they simply weren’t safe to be left alone at all any more.
(*by which I mean someone on hand ALL day, ALL night, 365 days a year)

Contrary to what is often popular opinion, there are some very good care homes out there. We did look at several before choosing for both of them, but were entirely satisfied with the care they received - and incidentally, neither was the most expensive.

Please, please, ignore those people who oh-so sanctimoniously tell you that they’d never put a parent in a care home. Such people typically have absolutely no idea of how physically and emotionally exhausting it so often is, to care for someone with dementia at home.

I know I was absolutely on my knees after having FiL living with us for a year. By the time it came to my DM a few years later, I didn’t even consider it. We supported her as best we could at home, until 24/7 care became an urgent necessity. She was nearly 89 when she moved, and went on to 97, which IMO is just one indicator of the very good care she received.

People don’t understand the huge amount of resource and support needed when someone is at this stage of frailty - you can secure the help needed but not usually at home or even in a hospital.

Go and see a few care homes over the holidays OP and make up your own mind.

Personally I work in the care sector and i will be choosing my DM a care home when the time is right (and she agrees!). They are definitely not all awful. I hear relatives every day saying how wonderful the care is and how wonderful the staff are. The families are supported too. I’d you can pay - and aren’t stuck with wherever social services decides is best - then you can pick the right place for your parent.

I saw a friend care for her father with dementia and I was horrified at her experience and his experience, compared to the care I see every day in care homes. She put her life on hold and lived in a constant state of anxiety, He was not safe at home - the incidents she had at home are horrifying, and if they happened in a care home it would have been shut down. She also did not have the skills to avoid or de-escalate his anger. She could not enjoy the remaining time she had with him.

When he went to a care home, finally, he had his first shower for months, was eating better, was more engaged with people because there were people engaging with him, there were some activities he was able to participate in - when he’d done nothing in his home for months beforehand, And my friend could be his daughter not his carer.

I suspect those vicious comments come from a very bitter person who has devoted years of their life to caring.

I personally wouldn’t care for a loved one because I am not a care professional. They would deserve better than any amateur attempt I could make.

Block this person and concentrate on finding somewhere where your mum can live out her life having her complex needs met.

When these people are saying the homes are “awful” what specifically are they referring to? Staff are cruel, the food is dreadful, medication provision is unsafe, residents are spoken to horribly? Or just that people living there don’t have the full freedom of choice and autonomy on say food choices and what is in communal too. TV that they may get if they were at home?

I recently had to get a parent into a residential home. I looked at a number and picked what I thought was the best and had decent regulatory inspections. Did I want to, no. But they were no longer safe at home with carers coming in and for a variety of reasons neither my sibling nor I were willing or able to give up our jobs and family and move in with them. That was completely off the table. I would view it like nursery - look to put a small child in one so parents can work and plenty of people will try and tell you how they are all awful, they could never do it blah blah. But they aren’t the ones who have little alternative with no family available to help, insufficient funds for a nanny, need to work and/or don’t want to give up on a hard fought for career. And yet many children go daily and are perfectly happy and well adjusted members of society.

For your mother OP it sounds like that potentially she could be at home for longer with less frazzlement for you if your father would accept carers coming in more often and I would push that line hard. That won’t alleviate all issues eg toilet accidents but may hold it for a while longer.

Thank you everyone, your replies have levelled me, I was feeling wretched last night. I have deleted the FB post as I can not face seeing another reply from that awful woman.

I, myself and a PA for disabled people but caring for a close lo with dementia is caring on a whole other level, I really do struggle. As others have pointed out, care homes have all the correct equipment and contacts, we have very little at my parents home and it'll get worse, not better.

I feel we have exhausted all outside help. The dementia department at the hospital discharged mum and handed her care over to the GP surgery, they don't want to know and have appear to have little experience of dementia. I've contacted all the dementia charities, they simply suggest dementia cafes or send out endless leaflets. SS don't want to know because my parents have money. A care home, whether that's permanently or respite to start seems to be our only option.

Looks like the new year will include lots of care home visits to find the right one.

My cousin and I used to stay overnight with out grandparents in case any issues arose as my nan started showing signs of dementia. Between the 2 of us we did it for 5 years allowing them some extra time in their homes. Both of us were young though at that point and single. My aunts and mum would provide an evening meal and pop in at various points in the day. It took a lot of coordination, time and communication between siblings that didn't always get on.

You have other responsibilities too and your dad does have the money to be able to support having a care assistant come in the evenings too. If he doesn't want that then I don't really see what options you have left. As for that women's comments, she sounds deeply unpleasant especially to dump on someone who is clearly going through a difficult time. I feel for you op. You are trying to do the best by your mum and I hope you find a solution that works for all of you. Dementia is a cruel illness. Wishing you all the very best.

They ae not all bad. One my SIL and I looked around for my mum was very nice and more importantly had a low staff turnover and a visiting doctor said he would love to put his name down for it!

In the end she did not go to a home but I must stress she did not have Alzheimers but was instead bedridden as her legs collapsed from under her and she also had bowel cancer. I cared for her and we did eventually get carers in when she could no long shower/go toilet. She had blanket baths instead. They were very good to her. However I cooked for her as their time allowance with every patient was very short. I was happy to do so, after all she was my mum.

My older friend has dementia and stayed in a care home for a while. I visited a few times and of course her daughter did too. It was a very nice place.

They were implying the homes are full of uncaring agency staff and one says her GM was covered in bruises. So I got the impression they were basically saying they were unsafe places and most were putting on an act for the families members and the truth behind the scenes was a different picture.

I really do wish dad would accept more care at home. They are in a perfect position to do so, their house has an area which could become a separate annexe with very little work to create this and they have the funds for home care but I think it's a case of out if sight out of mind for him. He's always been like that.

Many people with dementia do amazingly well in care homes, and their families benefit too.

Before visiting decide what’s important to your mum and your family, what you need from a home - for my mum it was good food, a glass of wine with dinner and a good social life, but your mum is likely to be different - somewhere easy for your DF to visit regularly, outings, peace and quiet, familiar things. With these in mind then visit the homes. CQC reports and local opinion can be very misleading or out of date.

OP ask for this to be transferred to the Elderly Parents board (it's in Other) lots of people with experience there and feel free to have a moan on the Cockroach Cafe thread. Then block the stupid cow and move on.
For what it's worth my MIL blossomed when she went into a care home after several years at home being cared for by FIL.

Yes it's really hard isn't it. I was surprised some types of breast cancer can be controlled by medication.

We had no choice but to choose a residential home, my mother couldn't cope in her own place even with carers visiting. The home seems fine, she's alert enough to tell me if anything was wrong. Costs a fortune of course. I think if it drops down to £14k approx then the council take over the full costs.

As they have money, they need to spend it on a full time carer at home or go into a care home, many of which are not awful.

I managed to care for my mum at home for TWO DAYS this weekend and it has been one of rhe most traumatic times of my life. She is now thankfully on end of life care, safe in a hospital. I have been so relieved to see how gentle and caring and respectful all the staff have been with her.
This woman can come and care for your parents herself if she thinks it's so bloody easy. 💐

So sorry you are facing this.

The decisions we have to make are all awful. You just have to make the right one for all.

We lost my Mum in 2022 and since then Dad has been diagnosed with Alzheimers and Vascular Dementia. He can fall over fresh air, has difficulty communicating and has sudden flashes of complete confusion. He also has a few other health issues going on. My brother is disabled and is extremely limited in the help he can give. Dad lived over 2 hours away from me.

I used to care for him by "video link" but he fell twice, rarely knew what time of the day it was and started getting confused with his medication. We had already done what we could with a fall alarm, dementia clocks and pouched medications but things deteriorate. Carers couldn't really help as we never knew when he'd need help.

He has come to live with us. But I only work about 10 hours a week and from.home. its flexible when I work as well. But, after 8 months, it is becoming like a more than full time job. There will be a time when I can't cope and a care home decision will need to be made.

I've only visited one and it was dreadful. I was so upset that I left and haven't engaged with any others as I hate making difficult decisions. But I know I will have to. Honestly, I'm probably in one of the best positions to help but it is difficult at times.

I feel for you. Its horrible

I'm so sorry that you're dealing with this, OP.

Someone I know is incredibly patient and forbearing and even she eventually decided that she couldn't cope any longer with her mother's dementia and had to put her in a home - where she was very well cared for.

And some homes are plainly fantastic - one of my elderly relations is in one, frail but completely compos mentis, and when I phone her (too far to visit, sadly) she chats on about quizzes and Sunday lunch and an outing she went on...

I'm the same age as you and have spent over a decade supporting elderly relatives including one with dementia.

It's so grinding. No one wants to help they all say how difficult it must be but no more than just words.

Even when one went wandering I couldn't get help. Her husband didn't want her going into a home either but was quite happy for me to do it. I run a business I work all hours because carers allowance is no where near enough to live on and pay for the extras like travel and yes I know all about attendance allowance that doesn't cover it either.

It should be a privilege to care for family but that only works when others help you. Too often it is left to one person and the state is quite happy that you are doing it and only help if you threaten to abandon the people you are caring for. To my shame I ended saying that but I just couldn't go on on the way I had. I did get some help but it didn't help much because the carers call you for things as well.

Take no notice of those who are having a go, they don't know your circumstances and they probably don't care for anyone themselves either

Please don't feel guilty, you are going above and beyond already x

You're right to step away from the Facebook, it is a cesspit. With regard to your situation, it sounds like you're father is happy for everyone else to compromise, other than him.

I would give him the clear choice that is his to make, that he either accepts live in care, or his wife will be going in a home in the coming weeks, and while this is not what you want it's the only way forward he is allowing.

You can only do what you can do and it's wretched, it's fine to say I Would Never, until you're actually faced with it you do not know how you will feel or what you would do, ignore anyone making judgements, this is your path to walk.