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

[Freeasabreeze]

Is anyone on here caring for a parent with advanced dementia?

How do you do it to the end without losing your mind?

We have been caring for mum for 8 years now and frankly, it’s breaking us. Since last summer mum has been double incontinent and almost non verbal apart from singular words here and there. We are lucky that she is fairly easy going, doesn't wander and doesn't have meltdowns or gets violent etc but everything now is about her comfort and care and second guessing all her needs. She looks thoroughly fed up most days and tbh, I don't blame her, what kind of life is it?

We have carers in 3 times a day but dad still struggles and so we (sister and I) help as much as we can which, between us is every day.

Yesterday on another SM platform I commented on someone else’s video, she was talking about her mother being in a care home and I was asking her some questions and said it’s something we are painfully contemplating and she kindly replied.

However since then I’ve been bombarded within the comments from other people telling me it’s a dreadful thing to put a parent in care and as children we should go above and beyond caring for a parent until the very end. Even when I’ve replied that it’s broken me after 8 years they reply with comments such as:- ‘I suggest you carry on caring for your mother for as long as you can’, ‘wait till you put your mum in one of those hell holes, then you will change your mind’, ‘Even the nicest looking care homes have evil people working in them’ or ‘Your mum looked after you all those years ago, it’s only right you should return the favour’. And then there’s one women who just keeps on and on and said this:- ‘I cared for my mum until the end. She was a wonderful loving mother who sacrificed so much for me, I WANTED to care for her, so I happily sacrificed my life the way she sacrificed hers for me, you should do the same’.……these type of comments keep coming.

I now feel so guilt tripped and wish I’d never replied to the OP to ask her a question. I feel absolutely dreadful now. I love my mum dearly and upon original diagnosis in 2018 we always vowed to care for her at home but I was naive and genuinely had no idea just how difficult caring for someone with double incontinence and advanced Alzheimer’s was going to be. On many dementia support groups, especially the US ones I regularly see quotes such as 'It was an absolute pleasure/blessing caring for my mom/dad and I would do it all again if I had to' - I feel dreadful because I've never seen it as a blessing, instead I've found it being draining and totally heartbreaking watching my dear mum being very slowly eroded away from such a dreadful disease.

The way these comments come at me leaves me feeling that most children (and I'm fairly sure most are women) give up their lives to care year after year for their parents and basically put their own life’s on hold for goodness knows how long? I have no idea if these people replying are single and have enough money to be able to put their lives on hold but I’m married, have (older) children still living at home, have a part time job and my own health issues. Giving up my life to care for my mum 100% would mean giving up on my DC, my husband and my health too. Is this what we are supposed or expected to do? Does society genuinely have a low opinion on those who place their loved ones in care (which I am sure for most is an extremely difficult decision to make).

These people's comments have genuinely broken me.

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.

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.

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.

@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.

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.