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 started caring for my DM who had severe osteoarthritis after my DF died. They lived in our granny annex so I'm aware I had it easier than many others. Dementia is so insidious it can be hard to realise that a loved one has it.

As happens in so many cases a crisis (suspected stroke picked up by a carer who hadn't seen her for a week) leading to a hospital admission. Thanks to coaching from a friend who had cared for several elderly relatives my DH spoke to the hospital and said that we were no longer able to give personal care and would no longer be able to fill in the gaps between care visits.

A week or so later a lovely OT told me very gently that she thought DM had dementia and she didn't think she could be cared for at home. She transferred from the hospital to a rehab facility where she was given a social worker and together with the discharge sister we agreed that she should be receive 24 hour care. I turned down the first place she was offered - I had heard nothing but bad things about it - and eventually she was offered the place where she spent her last two and a half years.

They went above and beyond to make her happy even though she was unaware of what was going on. We felt that it was her home, not an institution. Shortly before DM died my uncle who had visited her weekly since she moved in died suddenly. The staff, residents and other visitors knew him well and cried with us and supported us.

There are some homes that are hell holes but there are others that are warm and loving. Be kind to yourself.

I inspect care homes and know exactly what you mean! The all singing and dancing ones dont always match up to expectations.

I inspect care homes and know exactly what you mean! The all singing and dancing ones dont always match up to expectations.

The home my DM went to had worn carpets, mismatched tablecloths and desperately needed redecorating - things that would probably put a lot of people off. But the warmth and welcome from the staff - both to DM and to us as a family outweighed any sparkling whistles and bells.

If you do go down the route of care home care , then please install cameras in your mother's room and do not tell the carers or care manager that the camera is there. And yes you can legally do this before the load of shit talkers come along staying you cant .

The most expensive one of the eleven I viewed was a Bupa home and it stank of urine.

Please join the cockroach cafe. A wonderful supportive board who get it.
I’ve graduated but it was a lifeline- lovely to see you @IthinkIsawahairbrushbackthere fellow cafe member. Hope you’re doing well.

We are currently looking around various homes as we are going to trial respite to start to give my dad a break and then if mum settles we will consider it full time.

As with your experience so far we have seen good ones (sadly they were almost £2k per week) and others I wouldn't place my dog in, I actually cried my eyes out after the last care home visit it was dreadful.

We will keep at it until we find the right one for mum.

Shit talker here, but no, you cannot legally do this.

We’ve had the same experience with a Bupa run home. It was dreadful.

Agree when I worked in safeguarding I dealt with a covert camera in a care home hidden by family, I advised it was unplugged and returned to family, you need to inform the home and if the person lacks capacity to agree it needs to be jn their best interests.

The funny thing is men are NEVER made to feel guilty for not giving up their career to look after their mother or mother in law. It’s always women who are expected to sacrifice everything. Please don’t feel guilty about looking for residential care for your Mum with advanced dementia. She needs supervision 24/7 which nobody can manage alone.

It's almost always women isn't it? I don't know of any men who have taken time out of their lives to care for elderly parents. When my MIL was dying neither my BIL nor DH took any time off work to help their father.

Both of my friend's in-laws have dementia, they have 4 sons yet it's the DIL's who look after them both. Google tells me that approx. 12% of men care for elderly parents.

I really do feel that I have done all I can now, mum's care has gone beyond what I or the rest of my family can offer, her care does need to be in the hands of the professionals but even though I acknowledge that the guilt will always be there.

To be fair my DB has been brilliant with my DM. We’ve split all caring 50/50 and covered each other when we’ve gone on holidays.

Most people have absolutely no idea about how incredibly hard and stressful it so often is, to look after someone one with dementia. Their pious, sanctimonious remarks about how awful it is to put a parent in a care home, are best absolutely ignored. Easier said than done though, I know - such people are usually fond of telling you where you’re going wrong, too.

We had FiL (with dementia) living with us for quite a while, but eventually I simply could not cope any more - among many other things he was flying into truly terrifying rages over the tiniest thing - over which I usually had no control.

His younger sister lived in a seaside town with plenty of care homes, so after abusing me for refusing to have him any more, calling me selfish, etc., she insisted on a care home just across the road from her own flat, so at least SHE could show that she cared about him.

Well! He took to going to her flat at around teatime just about every day - and then her wailing started. ‘He won’t let me watch Countdown! He’s driving me mad, pacing up and down!’ etc, etc.

I said, ‘Well, now you know what it was like for me - ALL day, every day.’
She did have the grace to admit that she’d been wrong to abuse me.

It's so very difficult and I can't imagine anyone that I know being able to do this 24/7 for years on end. My friend's dad had a stroke in November and is still in hospital but the stress of visiting him everyday has really taken it's toll on her health already, she says she has no idea how I've done this for so long. The truth is that I haven't, it's made me poorly but according to these comments on the Tik Tok post that I commented on, it doesn't matter, my mum brought me into the world and raised me with love and I now must return that favour as it's our duty as their child.

I love my mum very dearly and she was a great mum but I just can not do it anymore. She has not long been discharged from hospital where I had to advocate for her hour after hour as they just could not comprehend how advanced in dementia she was and left her without fluids so she became very dehydrated, ended up on IV fluids and returned home with urine and diarrhoea burns to her fragile skin. This was the second stay in 7 months where tthe same thing occurred (last time she had fell and fractured her neck), it's so stressful.

Now mum appears to be poorly again, GP surgery on half day shut down today so won't come out and we are left with 111 who always advises going to A&E for whatever the issue (the paramedic who came last time said it infuriates them when they advise this). We already have it in her Respect form that she is only to go to hospital for absolute emergencies only so I have no idea what to do today for her.

And these people seem to think caring for a dementia patient is a walk in the park with replies such as 'It was an absolute pleasure caring for my mum/dad/grandparent/aunt' or 'It's your duty as a child to put your life on hold for a while to look after those that looked after you'.

Well, they must be made of stronger stuff because it's breaking me, that's for sure.

I would respect the Respect form @Freeasabreeze
Keep her comfortable today. Ring the GP tomorrow.

Hopefully the cafe will help and maybe guide you as what to expect from respite. There's generally some confusion on top of the confusion but push through. It's for your respite and also to see if the patient responds positively long term with different care

Alzheimer's is awful. I'm so pleased you have good memories of your mum. The nursing challenge you have taken on board for so long is for someone sadly your mum wouldn't recognise. I hope respite gives you a chance to relax and grieve.

Thank you so much GuiltFreedom

As a social worker Ive placed dozens of people in care homes and seen the effects of caring on relatives. The right home can work wonders. You're doing the right thing looking now, too many carers keep going until there's a crisis and the cared for person can then end up in any home that has a vacancy at the time which might be a home you dont much like or is too far away from you

Lots of good advice on here, but I just wanted to add something that never occurred to me before we had to agree to my mum moving into a Care Home. Mum had Alzheimer's and between us all we managed to keep her at home with Dad until she needed 24 hour nursing. It was one of the saddest days on my life when we moved her there, BUT she was far more content in the Care Home than she'd been at home. More smiles, more laughs and physically she relaxed. The Carers at the home said it's not uncommon. Key to this was Mum didn't recognise my Dad most of the time. He was amazing and so, so kind and loving, but to have a man who she thought she didn't know trying to help her get dressed, etc, and then getting into bed with her - it was deeply unsettling and at times she was scared. As soon as she was surrounded by smiling Carers in Uniforms she relaxed and felt safe. I felt dreadful when I realised. I still do and Mum's been dead now for several years. I know everyone's version of dementia is different, but sometimes a Care Home is kinder than keeping them at home.

@Hiff100% agree. It’s nonsense that all care homes are “hellholes”. Find a good one and it’s by far the best solution for all concerned

You've done an amazing job for your mum, and would she want you exhausted and broken, no, she would be horrified.

We managed to persuade MIL to go to a care home before she was as bad as your DM. Honestly it was the best thing for her, she enjoyed having people to chat to and activities/ outings. She did go downhill pretty quickly unfortunately, but that would have happened anyway (her own DM was been the same), and it was a relief she was in the right place.

The remaining time we had with MIL was so much nicer once she went into the home, we could relax with her and (mostly) enjoy visiting her. It was heartbreaking but we have fond memories of her last "sparky" months and that wouldn't have been the case if she had stayed at home.

There is a lot of moral judgement when it comes to "putting parents into a home". It's seen as some kund of weakness or lack of love on the part of the children/spouse but sometimes it is genuinely the best for all concerned. In fact I think families not infrequently are just about coping rather than being genuinely ok with their situations and won't take decisions that would benefit them all because of the type of attitudes you've experienced. Not all homes are awful. My Dad actively chose to go into the same home that my Mum spent her last months in because he had seen how well cared for she was. (She had dementia, he had physical health needs.) Yes, it made our lives easier - we were no longer as physically and mentally exhausted, continually on edge and waiting for the next crisis or near miss - but actually being somewhere with 24/7 nursing care and company was better for them too. It was certainly better than just about scraping by with rushed visits from carers and district nurses and their children in a continual state of exhaustion.
Alzeihmer's is a complex, multi system disorder. It is not surprising families struggle to cope. OP, it sounds like you have done an excellent job for far longer than it was reasonable to be expected of you. I know it is hard not to feel guilty, but honestly, you don't need to. People who make those sanctimonious comments are not worthy of your attention. You know the reality and those of us who have been in similar situations can empathise. It sounds to me that both you and your Mum would benefit from her receiving nursing care in a residential facility.
I believe that there is a high likelihood I will develop Alzheimer's as my Mum, her sisters and her Mum had it. I have already told my children that should that happen I do not want them to view residential care as a last resort or a failure on their part. I don't want my children to be providing personal care or to work themselves into a state of exhaustion looking after me. I want them to be able to visit me and be my children, not my nurses or housekeepers. And if that requires me to be in a care home then so be it. I've seen my parents struggling in their own home and I've seen them well cared for in a nursing home and I have no doubt which of those I think is preferable.

People do talk crap! My mum has dementia and she actively wants to go into care, for the company and the feeling of security. It is good that she is still able to express that wish. However I never considered her going into care as us reneging on our duty. It is about what's best for her-- 24 hour care to keep her safe and company and security. Putting someone into care doesnt mean you dump them in there and walk away. It is just a suitable relocation for them due to changing needs. I'm surprised to read that people think otherwise!

Exactly @JahanaraBegum

You just have to ignore other people’s views (not easy I know!) The sheer physical and emotional exhaustion of caring for a parent as they go through the stages of dementia really cannot be understood by anyone else. Even those in a similar situation as every one’s experience/ relationships are different. We are earlier down the road but have looked at care homes and I really wish my mum would consider one - we have an amazing local one. I can see the real social/ safety/ health positives for her, but unfortunately she won’t consider this so we bump along