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.

I don't believe that anyone who has genuinely done all the heavy work of looking after someone with dementia for years would criticise someone else for deciding that it's time to place their relative in a care home. However, I know a number of people who actually do very little of the actual caring for someone with dementia, but claim to do a lot, who seem to have very strong views on care homes.

My DM is in the early stages of dementia and I know that at some point she will need residential care. Unfortunately there are a lot of people around us who are making noise about 'I'd never shove my mum in a home', 'she cared for you when you were small, now you can return the favour', 'Keeping mum at home will be worth whatever sacrifice it takes'. This makes me incredibly angry because it sends a message to DM that care home = children don't care, care home = scary. They are also people who make a huge fuss of helping in the short term, or when there's a big crisis and will make a lot of noise about what mum deserves but won't get involved in the unpleasant drudgery of years of day to day caring.

Personally, I think the sacrifice a parent makes for their child cannot be compared to the sacrifice needed to care for a relative with dementia for years. When I had my DC this was my decision and the early years were hard work but also full of joy. I used a nursery so I could continue to work, enjoyed child friendly holidays/days out etc and built a social life of sorts with other parents/children. Every year things got easier and we now have wonderful young adult children that are a pleasure to spend time with. To care for DM as her condition progresses I would need to give up time with my own DC, DH and friends so would have no social life. It would be impossible to continue working properly- carers are helpful but won't be there 24/7. Realistically, it would be done out of duty not pleasure and things would become harder every year.

I have great respect for people who do this but I won't. I don't think any reasonable parent would expect their child to make this sort of sacrifice for them (it's a different matter of their child truly wants to do it obviously). I certainly don't want my children to give up what could be decades of their lives to care for me if I am in that situation and I have made my wishes very clear to them already.

You've done amazingly well to keep her at home for so long.
My experience of residential dementia care (two relatives, 9 years and still going) has been wholly positive. I have found care homes to be full of laughter, warmth and they support the whole family. Moving a relative to a care home can be so good for you relationship with you LO. You stop being a carer and become a daughter/wife again. Honestly, it can be lovely in so many ways.

@Hiff, re no longer recognising family, a friend’s neighbour, who hadn’t even had dementia for all that long, ceased to recognise her own husband (they’d been married for 30 odd years) and became terrified of this ‘strange man’ who kept coming into the house - she’d ring the police and tell them she was in danger from him! Actually those calls to the police (who passed the info to SS once they understood the issues) did help to procure her a badly needed CH placement quickly.

That poor lady had some ‘galloping’ form of dementia, she was dead after only about 3 years from the onset. But TBH (having seen far too much of it - my DM must have had it for 15 years) I have come to think that if you’re going to get it, that’s the best type to have.

I think you've done amazingly well to carry on this long. You know where your limits are and you're there now, so stick to them, as there's no glory in you/sister/dad being put at risk, mentally or physically through exhaustion etc.

I do wonder why some people seem to feel the need to shove their opinions down other people's throats, but frankly, it's none of their business, only yours, so just ignore them.

My mum had middle stage Alzheimers until mid Dec and had been looked after by my dad at home for many years. He was struggling more, but still determined to carry on. She had a spell in hospital with an infection and her physical health affected her Alzheimers massively, to the point that dad categorically said he could no longer cope. We managed to find a lovely care home within a few days, which was a huge blessing and she moved there. They were not evil or horrible and the staff seemed to be the most genuinely caring people...far more so than I could be. They're frankly humbling with what they do and how their compassion just shines through. Mum died last week, but we don't regret moving her to a care home for a second. Be kind on yourself OP and don't listen to idiots on the internet (apart from us, obviously!) xx

I’m so glad you are looking for residential care for your mother. You both deserve to have time just being mother and daughter, not carer and patient.

Im afraid it does sound as if she is extremely frail now and it is possible she will go downhill whatever the setting. It’s still the right choice.

I wouldn’t be too eager to say ‘if she settles’ - this can take a little while and I wouldn’t be too quick to move her again - every move is disruptive.

My mum’s final home was a Bupa place and in that case it was a good one and right for her - sadly homes can change. I would say a really top priority is a manager who is easy to get hold of and who you can talk to.

People on social media have their own motivations for commenting and I’m afraid it is very obvious that a lot of them are not exactly posting considered comments from experience, more to hurt other people for fun. Glad you’re ignoring it.

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.

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!

Good. They are almost certainly lying in any case.

She would have hated the idea. She does now, I am sure. She can barely string two words together now, I was will her all of yesterday afternoon and she kept crying on and off (she cries a lot), I asked her what was wrong but she couldn't say, just kept looking at me with teary, pleading eyes, I said 'Have you had enough mum?' and she nodded and cried some more, it was absolutely soul wrenching. But she always put my sister and I first and it does feel so wrong to place her in a care home but I know we have reached a point where we can do little more without it having a ever lasting effect on our own well-being.

My sister and I are at breaking point, we have no life ourselves because the stress has made us both so unwell. As soon as I got home yesterday I crawled into bed and stayed there until about an hour ago.

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

Absolutely, I have always been very close to my mum and I know she would not have wanted this for my sister and I (my dad on the other hand has a different view!).

I have already stated that it will go into my living will that my children are not to care for me should I become incapacitated for whatever reason.

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.

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.

This is why I think mum would do well in the right care home setting.

Dad is adamant she is not to go into care but apart from him, my sister and I and the carers popping in for half hour 3 times a day all she does is sit in her recliner in the living room staring at the tv for hours on end (she has very limited mobility).

She may not be able to talk, read, or write/draw but I know she takes everything in and loves it when you sit beside her and talk to her or like yesterday listen to good music and wiggle her toes. Even if she can't do much I am sure she would benefit from the comings and goings in a nice small care home. It seems such a boring existence for her now.

That's exactly where we are right now. We are worn out, broken, tired and barely able to look after ourselves these days. If mum does go into a home I truly hope it can be a positive experience for the last weeks/months/years (?) of her life.

That is all we could wish for her right now.

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.

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.

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.

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.

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.

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.

That's actually a really good point. We are having so many issues with mum being unable to get home visits as she is now housebound, a month ago the nurse at the GP surgery diagnosed mum with a UTI without even seeing her or testing her urine, the next day mum ended up in a&e and an unnecessary 10 day hospital stay where she ended up worse than ever because they allowed her to become dangerously dehydrated.

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 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 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.