Advancing dementia, caring for a loved one, care homes and the opinions of others.

Ugh those people wind me up. You shouldn’t have to feel bad about the fact that your mum needs even more care now than all of you together can provide. You also need to be her daughter not her carer.

Wr aren’t quite where you are yet but when we are, I hope we are strong enough to do what mum needs even if we wish things were different.

@Freeasabreeze late to thread as I've been away.

Quite honestly choose what is right for you and tell dissenters to fuck off or put their rubber gloves on. I'm pretty sweary so this would be an actual conversation but you might be less uncouth.

I'm still angry with a colleague who told me that what I was saying was "dreadful" when I was offloading about the toll caring for my mother was taking on me and the rest of the family at a social event over 13 years ago. Fortunately we no longer work in the same hospital so I don't have to muster up faux politeness too often. At this point to my knowledge my colleague had never cared for anyone and I had been caring for my Mum for over 15 years - sometimes having to interrupt my medical training to move in when my Dad (her main carer) needed health care himself. The toll was immense.

I now care for a different elderly relative (EPICF- elderly person I care for) and have commented on many threads. They moved into residential care in June 2025 having strenuously resisted. The tipping point was the ceiling falling down in their hoarded neglected house.

I"m really happy with the care home they are in. The staff are stable, they genuinely care, "but it's their home now" is often expressed when making decisions about what to allow. There is lots of social activity, the food is OK, people can visit at all hours and the staff actively facilitate old friendships. Yes, there are niggles - phone charging cables vanish regularly, knitwear gets a bit fried in the laundry system (I removed the cashmere!) and sometimes communication gets a bit lost between nursing shifts BUT I sleep so much better and I am rebuilding my relationship with EPICF. We've had some lovely lunches out/ trips to the art gallery. Not dealing with the relentless grind of trying to organise chaos with them actively making it harder has made this much easier.

Loads of my friends have commented that I'm in a much better place mentally than I was before this and I suspect my colleagues have also noticed. I'm still caring - sorting out financial chaos and prepping the house to go on the market but it all seems manageable now.

In addition, EPCF recently told me that they were grateful the ceiling fell down as it forced them into home and they now feel safe and cared for and enjoy the company.

This was such a relief to hear.

So actually care can be beneficial.

My DF was in residential care.

I work full time and when he was diagnosed with dementia the kids were 2 & 4.

He moved into a local residential home.
The carpets were ancient, there was a tarp over the conservatory roof and buckets to collect the drips when it rained.

However the staff were kind.

The staff are all local. They have family members there too. And if it isn't their parent or grand parent, it's Mrs thing from next door, or auntie Mary that they are caring for.

They have back staff but no agency staff. None of the residents got COVID.

Dad was safe, fed, looked after and loved. I couldn't have done all that. And we got to keep the father daughter relationship not carer -older adult.

Do what is right for you and your family. Don't allow anyone who isn't living your life to guilt you.

So do what you and other family members think is best gor your mum. Would she want her family to be exhausted, physically and mentally, with little to no time for themselves/their families/their jobs?

Imo the best thing you can do is not to do the care yourself, you are not a trained, qualified carer, but to arrange for the best professional care that you can find for her.

That might well be in a care home which you have chosen carefully to be one whose ethos matches what you think mum will enjoy/feel comfortable with.

The wants of those at the end of life don’t trump those of others in the prime of theirs. Quite the reverse.
MIL is in care with frailty and the beginnings of dementia. There is zero guilt. She is now clean, taking her medication regularly and living off more than cup a soups and dry ham sandwiches. Caring for an elderly parent, dementia or not, is not a life I’d want for my adult children. Others’ opinions are completely irrelevant.

I watched a friend of mine deal with his mother and her altizmers. Over time her memory and ability to look after herself got worse. I advised him that it was time to put her into a care home. I knew that he was both physically and mentally exhausted and she needed more care. Within a few weeks of her being there he told me that she was very happy there, the staff were very good to her and he could spend time with her as her son. He took her out for a few hours the odd time and she was well cared for up to her death.

The reality is that you have being minding your mother for years and it far harder than some people realise. Then unlike minding a baby or toddler your elderly parents health is declining and the care needs are getting higher and harder.
Your probably not getting a full night of unbroken sleep and dealing with the NHS, careers ect and the never ending admin work is both physical and mentally draining.

I would start to look at care homes and arrange some respite care to see what they are like. As other posters said here when you see a few places you get an idea of the good/bad and what the staff and managers are like. Some places might not have great decor but the staff are nice and you can tell the people there are well looked after.

You also need to consider your own physical and mental health and do what's best for you. If you end up in poor health your not going to be able to look after yourself let alone your mother.

I am so sorry you are going through this, and you sound like a wonderful daughter, I'm sure your mum always knew you would be.

I went through this with my own mum, and I still feel guilt for not being able to care for her till the end, we always think we could have done more.

But facts are sometimes a loved parent needs more help than we are able to give, and care homes provide round the clock care....sometimes family are not medically or physically able to do this.

My advice would be take care choosing the right home fro your mum. One that allows visitors of potential residents free run to talk to the other residents, because they are the ones who will tell it like it is.

We also got advice from district nurses, Dr's, local people, and made sure the home we picked, which was small and friendly,welcomed visits, and had no problems with us taking our mum out when are where she wished to go.

Good luck, I know this time is difficult, but please ignore people who criticise, they have never walked in your shoes. x

I’ve had two grandparents placed in care homes due to dementia/Alzheimer’s and I’ll be honest, it was the best decision for everyone and there’s no regrets at all. You have, as a family, done an incredible job caring at home but ultimately I believe it’s an illness that is best cared for in a formal care setting. If you find a lovely, well run care home, it can deeply enhance the quality of both the end of their life and the time you spend with that person.

I do think that increase in pressure to care at home is as a result of the right wing agenda - austerity in any care provision and support, and transferring the burden back to women. I would not be surprised if many of the people who told you you should be glad to do it are bots.

someone needs to improve nursing home PR. There are so many positives, and lovely to hear the positives on this thread, but all the negative pr means that the elderly are really reluctant to go in and families really hesitant which often means years of discomfort/ families struggling and not enjoying spending quality time with their loved ones.

Yes to nursing homes having easier access to the GP and other services that improve quality of life. We made many desperate 8am calls and e-referrals in the year before our Dad moved.

Also, persistent leg ulcers for years at home which really affected his quality of life. Then when incontinence became a real issue I remember begging the community nurse to change urine soaked dressings and their reluctance to come in between appointments (I know they are over stretched but it can’t be okay to have an ulcer wrapped in wet bandages for days).

The nurses in nursing home are all tissue viability nurses and pride themselves on their wound care - leg ulcers are now rare. Foot care nurse also visits regularly.

@EvelynBeatrice makes a good point that nurses and manager get to know them and care is more personal as well as wider social opportunities.

That’s a really good point about the GP, my DM is reviewed by the GP every Wednesday and he visits the home every two weeks.

We also found that moving our MIL to an excellent nursing home was ultimately the only way to ensure GP care in person. It was hard enough to get repeat prescriptions from the local GPs. They refused point blank to do home visits even although she was bed bound and the carers were doing their nut!

The home had a GP visit weekly. The nurse also ensured she wasn’t in pain. I arrived unexpectedly once to overhear the nurse and corridor manager discuss her worrying MIL’s shoulder was bothering her and saying they’d get gp on it. Very reassuring.

My Mil is now in a carehome and it's been better really. Her level of care at home was starting to be more than Fil could cope with and he's a lot happier now.

Things like she has access to a physio and a GP on a regular basis, too.

The best thing we did was move my MiL to a nursing home, she actually improved as the specialist staff were able to care for her, and offer things to alleviate the boredom of just being at home, with, although loving, family members who were nearly broken, trying to cope.

My FIL was adamant that MIL wasn't going to go into a home despite being severely disabled after a stroke. But when his own illness made it impossible for her to stay at home she did and she blossomed. She couldn't talk, read or write but she had her favourite spot where she could watch all the comings and goings instead of being stuck at home with just FIL and the TV. She loved the sing song sessions and always joined in even though she could just make odd wailing noises.

Well I’m telling you that any loving mum wouldn’t want this for her child.

Good. They are almost certainly lying in any case.

What do you think your mum would have wanted for you?

I didn’t have my daughter for her to sacrifice years looking after me. I’ve told her to stick me in a home in such circumstances - and I’ve told her that is my firm instruction and view while I have my full marbles!

The thing about your loved one being in a care home it means that you are no longer a carer but a daughter or a son.