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.

Take no notice of the horrendous judgey woman. She is just sticking the boot in while you are down and in all likelihood is not even in your situation. Make sure too that she is blocked on all avenues she could possibly use to get back at you. You have enough on your plate without having to deal with her bullshit.

I'm sorry you are going through this. I have the worry of care for an elderly relative too and there is nothing easy or straightforward about it at all.

You are looking for the best and safest way forward for your mother in a home where she can be cared for properly with you and your Dad visiting regularly. You aren't abandoning her.

Your Dad might be digging his heels in due to a sense of denial about what is happening and a feeling of guilt towards your mum?

I suppose you will have to get firm with him, although it certainly won't be an easy conversation, and say that this is for the safety of both of them and that he is not abandoning her. He can visit daily if he wishes and this will buy you all some time to see your mum with much less stress because hopefully her main needs such as medication, feeding and personal care are taken care of. I think some (probably not all) homes allow a spouse to buy themselves a week's worth of dinners so that husbands and wives can still eat together as far as possible. You'd have to find out about stuff like that when the time comes. If available, it might help persuade your Dad and ease him into the new routine?

I'll wish you all the best.

My mum has been in your shoes @Backtothe80splease. The strain of caring for her mum with dementia nearly broke her.

She has said that if, god forbid, the same happened to her, then I should put her in a care home and not feel guilty. She would not want me to put myself through what she did.

I honestly can’t believe some random online is abusing you about this! Some people seriously need to have their internet access revoked.

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.

Reminds me of my FIL when he was dying. So much money in the back and he still expected MIL to drive herself into an early grave caring for him instead of paying for carers (she won in the end… although the money had to come out of “her” bank account instead of “his” 🙄).

People who come out with the judgey comments have hardly ever actually had to care for an elderly person. Take advice from people who have lived through it.

I visited a friend in hospital recently, there was an old lady in the side ward with advanced Alzheimer's, she was very noisy and unsettled, especially at night. The reason she was there was because her daughter - her sole career - was elsewhere in the hospital having suffered a heart attack. She was your age! Do not feel guilty about stepping back. You have other family who need you too.

You need to do some proper research into the homes near you. Look on the CQC website, read the inspection reports and visit some of them that look suitable.

Care homes are not places where people are 'dumped'.People are living much longer these days and have much more complex needs that cannot necessarily be looked after in a domestic setting.
My DM spent her last years in a care home, although my DF was very resistant. It looked like an ordinary and rather depressing care home, a modern purpose built care home, but the staff were fantastic and the care she received there was excellent. She was very content and well looked after.
Also, go to the Elderly Parents forum on here, it's a brilliant source of support and advice.

MIL has recently gone into a care home after FIL died. She is extremely well off and IMO now is the time to spend it paying to make her safe and comfortable. I'm sure she'd rather live with SIL or us but it's not happening. It's not feasible or fair.
The wants of somebody nearing the end of their life don't trump others in the prime of theirs. Everyone I've ever know take on a caring role has ended up on antidepressants. I hope I wouldn't do that to my busy adult DC with jobs, lives and families of their own,

Step away from FB

Im a carer for my mum, shes still got some life about her and can dress herself and toilet herself, I have told her, that I wont be giving up my life to care for her when the time times that she needs personal care, Im not the person to do that job and she can either pay for a full time live in or go into care. She lives with us which is why I can manage right now but at 60, Im no spring chicken myself and Im feeling the strain when shes not well, as she isnt now

Its all very well saying family should look after family but back in the day, families lived in much small communities and never moved far away. I have two sisters - one on Oz, the other in London who has never darkened our door since we moved here.I have to do it all, the hospitals, the gps, getting her personal shopping, cooking for her, cleaning her rooms, making her bed - as well as my own areas of the house and of course find time for grandchildren and work - CA doesn't go anywhere, she refuses to apply for any help

Right now I can just about do it, but its wrecked mine and DHs marriage . Lucky that we are both pragmatic and just get on with things, but its not the life we saw ourselves having -we live as old people when we are still very much young of heart

You do what you know in your heart is best for you

Ah @Backtothe80splease that sounds so overwhelming.

I know your DF is reluctant to have evening and weekend help, but he was dead against getting any help at all. Until he got it and it made life better. Can you get the carers in on a trial basis and see how he feels 4 weeks in? Would a carer be able to take your mum to the day centre instead of you?

I wish you well in finding the right care home. I know the very real horror stories, but I also know of actual caring homes where people were safe, stimulated and looked after with dignity and respect. Take your time, do your research, bring your dad to the viewing. See if any offer respite services.

Your mother's needs have increased, so her care needs have increased. Get the weekend/evening carers in and give yourself a few weeks to breathe @Backtothe80splease.

Strength to you and you and your family.💞

Thank you all, so much. I was in tears last night because of that dreadful woman, feel much better reading all of your replies.

Never in a million years did I envisage spending 18 years caring for my children only to then move straight over to caring for my parents, how utterly depressing. I do believe my dad is quite selfish regarding this but he never had to care for his parents as they both died quickly, maybe if he'd experienced anything like this he would feel as passionate about it as I do. I never want my DC caring for me or DH, ever.

I've made peace with myself that a care home may possibly be the best thing for mum. We will visit as many as we can in the new year and see what happens, fingers crossed we will find a good one.

And I will definitely stay away from FB!

I wonder if it was an older person harassing you on FB. My experience was that older people expected looking after by family because the alternative was “workhouse” like institutions. And in those days, you got old, then ill and died promptly! Now we get old, ill, but stagger on for decades…they might have looked after people at home, but it wasn’t generally for years and years, and there would also have been lots of family living locally.

Give your dad a choice, live in carers or residential home. But I’d push for a home, it’s sometimes as much work managing carers as doing it yourself. There are wonderful homes out there, it’s just finding the right one. Good luck OP, “don't be setting yourself on fire to keep someone else warm!”

Thank you.

I am hoping dad may see how much easy life can be with extra care in throughout the day. I'm going to have to be a bit firmer from now on before the truly takes over my life and I need to find a new job next year so I won't be around all the time anyhow.

Thank you, I will need to give him the choice as I just won't be around so much once I get a new job next year, I can't survive on carers allowance anymore.

The FB woman looked around mid 40's according to her profile picture. She insisted she had years of personal and professional experience but how knows.

Your dad will accept care at home when you take a step back, which you will have to do..it is a very selfish thing to refuse care in favour of wrecking your children's lives and you need to be clear on your boundaries and stick to them despite the emotional blackmail.

See this is the thing, we are the first generation who are being squeezed from both sides. My grandparents were all dead in their mid 60's, parents being in their 40's at the time, us kids independent , parents went on to enjoy their lives

As you say, we have gone from child care to elder care, we havent lived our lives as adults with no dependents

We ( dh and I ) cant even have a holiday, we cant have that cruise, we cant go to Oz to visit with my sister and our son, the most we get is a two night break twice a year

Even when she was fitter and Id say to her, go take a cruise, go on holiday, she would be saying I just wanted rid of her, pushing my buttons, bringing up guilt, that I had to do more, had to be better...

Now she cant travel, shes housebound now, we are awaiting a hospital admission which will be a short notice phone call, so we ( DH and I ) cant go together to visit the kids and grandkids, someone has to be here 24/7

No one who hasn't been in this position understands how much the care giver gives up

The woman that said that to you is a massive C word and putting our grandad into care was the best thing we ever did fir him. Instead of being his 24 stressed carers, chefs, shoppers, cleaners etc we were able to be his company again. It was lovely. We couldn't cope dad and I no matter how many carers we had and grandad was lonely. He refused a wet room and insisted on a wash down at the sink. He went from grubby and depressed to we cared for, happy and with a ton of chums. The home was like family to us.
I'm very sorrowful that we didn't do it for Nan. Instead of enjoying her in her later years, she became a source of great stress and anxiety for us all and literally sent me grey. It was awful and I wish I had a time machine to fo things differently but it was our first time round on the caring carousel so we just marinated in stress instead.
Don't let anyone slag you off for trying your best. Big huge hugs!!

@Backtothe80splease don't you worry darling, I can't actually pick up my mother if she has a tumble as we're completely different sizes so it was the best thing for her to go into a home where she has 24 hour care. It was the best option for her.

The cost is a nightmare but a necessary evil, it was really difficult having phone calls at 3am saying she'd had yet another fall and I'd have to scramble out of bed.

Some homes are really nice.

That awful woman had no right to say those things to you, and I suspect if you met her you'd immediately peg her as the sort of self-important ignorant gobshite you wouldn't take advice from in a million years.

My dad has dementia and has been living with me for six months since his partner died. It's manageable at the moment, though we've had our moments, but I am under no illusions about the future. If he becomes fully incontinent, can't recognise any of us and starts wandering in the middle of the night, we'll be looking at residential care options, for his safety and everyone's wellbeing. I have relatives who are very starry-eyed and syrupy about how lovely it is that we have taken him in rather than dumping him in one of those nasty care homes. If and when the time comes, they will be told in no uncertain terms to STFU.

Several years after developing dementia, both of my grandmothers moved into residential care. And once they had settled in, they both seemed happier. They were looked after by cheerful carers, had a predictable routine and companions to chat to, plus afternoon activities such as crafts and sing-a-long musical performances. With the best will in the world, we couldn’t realistically have provided all this at home.

We might have also struggled to keep our relatives safe, as our own (small) home wasn’t suitable for someone with such specific, high-level needs and there were limits to how much we could have adapted it.

Take no notice of that awful woman. I hope she isn’t really a carer herself as she is clearly lacking empathy and compassion.

My mother, 99 and not demented, chose her care home and is very happy. She got to a stage where she was finding everyday things just too much, and having stopped driving was getting lonely. The staff are lovely, and she reckons very caring. She is adamant that being cared for by your children is the quickest way to wreck a relationship.

One of her sisters, a mere 92, nothing like as healthy as my mother, fought against care or a home, until a stroke meant she had to go into one, and she loves it. So really they are absolutely not the most horrible places, though I guess you do need to choose with care.

Their little sister (85) said to me today that when she can no longer live independently she too will be going into a home, despite her daughter wanting aunt to move in with her. Having visited both her sisters on a regular basis for the past 2 years she knows what nice places care homes can be.

So @Backtothe80splease please don’t beat yourself up about it. Facebook women sounds unhinged to me. Obviously care homes do cost a fortune, but so does live in care - from what I can suss out it tends to be comparable cost wise.

@Backtothe80splease I had to put mum in respite care twice. The home was lovely and the staff amazing.

the second time, I had one of her neighbours lecture me because he cared for his mum for years. At one point he said it nearly broke him but he was glad he did it. I think he has to tell himself that. He knew I'd had a nervous breakdown and still said it. I don't see him often thank god. You can imagine my opinion of him.

my mum doesn't have dementia btw.

i posted here about how I felt judged by others- not just him - but in the end I just had think, stuff them. They don't actually care about me.

I hope you find a lovely place.

You will know by her if she is getting cared for in the home. My gm (with dementia) moved to a home after my gf could no longer mind her. He visited everyday, had lunch with her even when she didn't know him. And eventually moved into the home with her when he got frail - same room!

If you are visiting regularly, and keep your eyes open, you will pick up on a lot and can advocate for extra care if needed. It's really not a one person job, it takes a team.

What a vile-sounding woman. Do people think looking after a relative with dementia is like caring for a large baby or something? It isn't, at all. Dementia is a disease, not an inevitable life stage. Your dad is an old man himself and you have family responsibilities. You are right to take action now, which will be preventative, because your mum is in fall territory OP. Not that slips and trips can't happen in care homes, but they are generally a lot safer. No-one wants to end their days in a nursing home. Think of it pragmatically, it is the lesser of two evils. And yes, I'd like to go back to the 80s as well - I've even started dreaming about it!

Please don’t worry for feel guilty. Dementia is awful for everyone and often unbearable for the carer/s, particularly as as it progresses.

I am an older adults social worker and therefore know all of the care homes in my city. As with everything, they vary. You are quite right to take your time seeking the right place, and so much better to do it in a planned way, rather than an emergency.

i wouldn’t be swayed by swanky surroundings / posh areas etc, and don’t base your decision on price. One of my favourites in my city is a low cost LA home. I would be looking at: general atmosphere and feel, staff interactions with residents, staff turnover and staff morale which you can usually gauge by chatting and observing. I would ask about relationships with local health provision, food (quality, are residents offered choices etc), activities/ outings (if you feel your mum would benefit from this). Also find out how experienced they are with dementia - at 6 years in, I would be looking for a specialised care home in dementia. Another of my favourite local ones is one where the staff wear their own clothes in the day, and pyjamas overnight , so that the residents feel at home.

i would also suggest starting with respite first so you, and she, can see what it is like.

I know so many people who have really thrived in care homes and made good relationships with staff and other residents.

You are doing the very best for your mum, and you have to look after yourself too. Oh, and I have also been involved in 2 recent cases where the husbands were caring for their wives with dementia and in both cases, the husbands died suddenly. It was much less confusing and traumatic for the person who had been attending regular respite, and the home were able to offer her a full time place immediately.

I think it's much better if carers or care homes can be used because then you are like family and not carers which is better all round.

My dad is in rehab hospital and has finally been allocated a social worker and got a care home place lined up in the new year which is such a relief. He has dementia and mobility and heart problems and was really struggling in sheltered housing even with carers coming in, his health is improving now along with his mood from the activities and having more people around.

I hope this helps reassure you OP. I don't feel guilty just happy and relieved.

I haven’t read the full thread but I don’t know how people afford to do it! I couldn’t give up my job, I would lose my home if I did that. I just wouldn’t be able to do it. My dc need a home. My dp’s would HAVE to go into a home. I could visit them in the evenings and take them out at weekends that way.

My mum is 86. Had a fall and was told by the hospital she was unsafe to go back home so had to go into a residential home. She loves it there she said it's like being on holiday. Breakfast in bed, lunch and dinner done for you. All washing done lots of activities to do. She has put on weight and is doing really well. Now when I go to visit I spend quality time with her not going round to to her house helping her with dressing, meals and housework.

So hard. Depends on how much money/equity in their home they have. There are a couple of care homes near us that are like luxury cruises, resembling nothing like a care home but with the highest level of care. They are extortionate though.