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.

Actually the point about respite is interesting, because that is a way of testing care homes for a week without making a commitment. My DM went into a care home several times to give us respite before she went in full time. Something to ask them about when you visit next year.

Its all very well for people to talk about care in the home, but there is a massive shortage of care workers, even if you can afford to pay.

Does your dad really want her in a home more than increasing the carers support at home? So tricky for you.

Please block the nasty person. They don't know what it's like until they've done it. Women shouldn't have to martyr themselves and ruin their own well being. I'm sure there are nice care homes

Thank you for your reply. I will make a note of those suggestions.
I do think starting with respite may help, it'll give us a feel of a place, we'll see how mum gets on there and how dad feels about having time to himself.

It's so hard we are really struggling but dad seems to think my DH should support me financially whilst I help them out. He is very old school and seems so out of touch with COL.

Tbh, I think a lot of it is out of sight, out of mind. He struggles seeing mum's dementia progression and is in quite a lot of denial about it all even 6 years on. I'm sure the reason he wants her in a home is because he knows he won't cope mentally as well as physically when she gets much worse.

My Nan went into a home when she started throwing her weight around and my grandad couldn't cope with being hit by her.

That’s why we are called the sandwich generation. Children still at home and parents that need help/care. My DM died last month. Although I wasn’t her carer I did a lot. Endless hospital and drs appointments, errands, shopping, household jobs. Before she went into hospital she was able to look after her own personal care. But I very much felt like the mother/daughter relationship had been chipped away at over the last few years and I was her carer. It was stressful and at one point early last year I had a few weeks where I was very unwell through the stress of it all. I guess my point is that you have to consider yourself in all of this, it can’t just be about what they want.

I would not feel guilt about putting a parent in a home but guilt for sacrificing relationships such as those with my husband and children. For me they are priorities along with work providing for my family. Mil and fil both have dementia. Mil was put into respite as a break from fil diagnosed with dementia. Whilst in respite mil became aggressive and we had an emergency diagnosis and she was placed under DOLS and moved into a dementia care home as she was aggressive with the staff. We said she could not return to fil in that state. She had previously had scans and we were waiting for a diagnosis. Her behaviour has deteriorated and she is constantly falling almost every day now. Plus aggressive and delusional. We could not care for her at home. I know she is safe and well cared for.

@Backtothe80splease have you heard this saying

"Don't take criticism from people you wouldn't go to for advice"? do not lose another moments sleep.

This is a fantastic resource, I do hope they have something near you and your parents.

Watching a loved one struggle with the ravages of dementia is soul destroying, I wish you peace. 🌻

Ignore the FB woman, she'll have her own agenda. If she's anything like some people I know who post on FB the back story will be entirely different to the one she's setting out. In their case it wasn't care homes but the equivalent scenario would be that she was sacked by a care home and is now anti all of them!

Yes some homes are dire, but there are lovely ones out there. One of my relatives chose to move into one, and it was such a positive experience. And for many it's far far better than being at home still with haphazard visits from carers, home maintenance not happening, freezer meals and hours alone every day.

Instead of FB can you ask around locally in the sort of places where people will visit the local homes regularly. Maybe a coffee morning at a church or similar as they'll have members of the congregation who've moved into homes and who they visit. I had a useful chat with a GP friend who pointed out the two homes she wanted her parents to go into.

I just want to say that a relative who was mentally sound but very frail went into a care home and it was a very positive experience. Good food although a Coeliac and well looked after.
We were not able to do much research into care homes before she went, but it all turned out well, although expensive.
Please don't feel guilty and live your life.

Sometimes you finish up with a compromise solution. You can't be a full-time carer as you have family commitments; your dad could choose to have full-time care at home but won't so a care home seems like the best option.

My Mum is in care because she refused any help at home even though she wasn't coping. It's been the best thing for her and me, her frazzled carer. I can be a daughter again, not a rather resentful grumpy nurse, shopper, handy person, cook and cleaner . The home is good , not perfect but I am now free and not stressed so can enhance her experience and continue to do what I can to make her later life happy and comfortable. Look after yourself! 💐

My own Mum had driven herself to a nervous breakdown caring for multiple elderly relatives and she always told me not to do this: "put me in a home!". Luckily it never came to that, but I was grateful anyway.

Well the comments from both facebook nut and sons girlfriend about ALL homes being awful are simply not true , not even worth a reply.
None of us want to put a loved one in a home but sometimes there is absolutely no other choice.
My mother has an alzheimers diagnosis but at the moment fingers crossed she is absolutely fine,anyone not knowing would be unaware ,but i am under no illusion as to what the future may hold.
We 3 siblings will do our best for her and keep her at home as long as we can but i absolutely believe that no one should 'sacrifice' their life for that one person and an illness that can go on for a good few years.
It is impossible to live a healthy functioning life whilst at the same time caring for an elderly person with dementia ,something will have to give in time and its going to be you the carer and if that does happen and you can't do it any more because you have been slowly wearing out over the year after year of relentless grind on top of your own needs in your life then what do you do ?
Could you possibly take a step back for a while so that your dad has to face the situation on his own which may give him some clarity of how much help is really needed ?
I really sympathise with everyone facing this its bloody hard and you feel guilty with whatever choices you make .

Hi @Backtothe80splease . I haven't RTFT but have seen your posts. I just wanted to say that my DGran was in a care home for about 6 years when she had dementia. My DM looked at several near where she lives and picked the one that she was happiest with. It was a good fit for DGran and she was happy there. There were some agency staff, but they all seemed very kind and the residents were well looked after. I think it helped my DM that she was nearby and could visit her everyday, so she was happy that DGran was safe and well cared for.

Definitely do your research, but I just wanted to say there are some good care homes out there!

Good luck with it all X

I am definitely going to have to find some way to find balance here as it's really affecting my memory tap and physical health and having a huge knock on effect with my own families life which my dad seems obviously to.

I am sorry for your loss x

I am definitely going to have to find some way to find balance here as it's really affecting my memory tap and physical health and having a huge knock on effect with my own families life which my dad seems obviously to.

I am sorry for your loss x

Not all care homes are the same. I work in one and all staff members deeply care for all of our residents, we develop a lovely bond with them as they do with us.

Good care homes are nothing like the stigma they used to be.

Don't let anyone make you feel bad about your mum going in a home, it's nearly always the best option all round. Your mum will get the best care required by people who know what they're doing.

Look around a few homes and get a good feel for the place, check out CQC ratings also.

I’m sorry op, this is so hard to deal with. It seems clear it’s time your mum went into a Home. This is not a bad thing or any kind of failure on your part, and you need to stop thinking it is. Research carefully and pick the right place and both your mum and your dad will benefit. My mum benefited hugely from exactly this once we had realised and accepted it was the only thing to do for the best (she started wandering the streets at night and that was the final straw). The Care Home was wonderful with her and for her, far better than struggling on at home.
You have a life and a family too remember.
PS and step away from toxic people on FB!

My mum went into care earlier this year. She loves it. It is absolutely brilliant and such a relief for everyone. You may need to look at several to find the right fit, but there are excellent care homes out there.

Following some advice on here last year I have stepped back from what I was doing, which was most stuff but it obviously hasn't been enough, I need to step back further but the guilt eats me away.
My DH gets annoyed when I say this because in his eyes my father is fully aware of who I'll this is making me but chooses to bury his head in the sand over it.
I really do feel stuck between everyone right now.

Don't rule out the retirement villages style of care, there are a few around us, you can pay for different levels of care but also live as a couple and independently, so your dad could stay with her in a new bungalow etc and then she would have care.

That way his needs would be meet as well with meals, and cleaning etc.

Sadly there aren't many in our area but the one that I've suggested to dad he won't even entertain, says he doesn't want to move.

I'd found these lovely flats opposite the day centre that mum goes to. There is a communal living area, hot lunches every day, trips out and a 24/7 manager on hand. I suggested renting out their house and renting one of these flats but he says I'm interfering and he can't imagine anything worse.

I do think he's reached this stage where it's 'out of sight, out of mind' regarding my mum, he really wants mum in a home moving forward, he doesn't want to have to deal with any of it.

@Backtothe80splease you really are important in this. You are the only one that can take a step back, you must do it for your mental and physical health. I was pretty much ‘on call’ for my DM. After my spell of being unwell with the stress of it all I tried to put in some boundaries, some days they worked better than others. Some words of advice I took from here at the time were ‘ let the crisis happen’ as in, as long as it’s not life or death or going to cause injury to someone let it happen. Let the prescription not get collected, let the phone calls not be made, let the housework get behind and the errands not get done. You are important in all of this, you have value. You cannot run yourself into the ground, you must start saying no or doing things on your own terms. No guilt. You’ve done a lot and from someone who understands what you are going through you I hear you. Look after yourself x