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.

@Freeasabreeze you are not alone and I have encountered the guilt trippers too.

Please come over to the Cockroach Cafe where we understand that you are a person too, you have your own life and other responsibilities. Sometimes you have done years of sacrifice already and hard decisions have to be made because things have changed - and it’s not all about 1 person.

Cockroach cafe

My dad was diagnosed with alzheimers and vascular dementia in his mid 50s, he passed at 70.
For 11 years we kept him at home. I was his carer. 2 days after I lost my husband, my dad pushed me over while I was showering him and I realised I couldn't cope any more. He went into a nursing facility.
I had so much guilt over that, but it can destroy you looking after someone who needs so much care.
In the end he was completely bedbound and even visiting broke my heart every time.
I have told my own children that if I get it, they are to put me in a home and walk away. I couldn't bear to put them through what I went through.

Speaking as a social worker you have done amazing looking after your mum as long as you have done and you sound lovely. As a mum I wouldn't want to burden my children or family and can feel the difficultly in deciding what is best for your mum. But remember you are only human, have so much to give, deciding on a care home for your mum does not make you a bad person. Ignore what others say they aren't living with what you are. If you decide that mum needs to go on a care home you will have more of a quality relationship with her plus there are more staff to look after her.

How you have looked after your mother so long with her ever increasing needs is amazing op. It sounds like she now needs to be in a home. This is nobody’s business but yours. We put my mum in a home before she was as advanced as your mum, and I give no fucks. We all have lives, jobs etc and a home was the best place for her. She was well looked after. Don’t listen to people who try to guilt you, just don’t.

You sound amazing. My dad needs to be in a home (he has dementia and despite carers 3 times a day, plus me, my sister and a good friend of his, he is not safe to be on his own, but still won't go into a home - thankfully the social services have now agreed with us, so things should get moving).
Anyway, a few people have made comments both For him staying at home and Against them being at home, so it does seem to be a case of we couldn't do right whatever we do!!

Thank you, I will definitely come over :)

I feel the same way, I have told my children they are not to care for me if I get it too. Absolutely no way do I want my children going through this year in, year out.

I am sorry for your losses.

Exactly, if we place mum in care then we have abandoned her yet keep her at home and I've been told by others that she won't be looked after as well as in a professional care setting. As you say, you just can not win whichever path you chose to go down.

It absolutely is not a failing to have to look at a care setting for a parent (or anyone). Caring is such a difficult role & with the best will in the world, we can’t necessarily meet the person’s needs all of the time. Absolutely consider 24 hour care in a nursing home setting. It’s not failing, it’s looking after yourself and the person.

Thank you.

Unless people have actually done it for years they shouldn't comment. I've been caring for DH (not dementia) for three years and it's so hard. Looking at respite care soon so I can have a proper break. I am so sorry to hear how cruel random people can be. Huge hug from me .

Thank you. I am sorry you are in a similar position with your DH. I hope the respite works well for you both. That's what we are going to do first, try finding a nice home for regular respite sessions then if we feel mum is settled there we will consider the home full time x

@Freeasabreeze firstly you sound like you have done an amazing job. Secondly it is absolutely no body else’s business what you and your family decide to do in order to meet the needs your Mum now has. Absolutely nobody has the right to guilt trip you.

We are a generation with elderly parents living existing so much longer.

Choose guilt over resentment every time. As for people talking about nursing homes - which is probably the type of facility you need to look at - being ‘hell holes’ that is simply hyperbole. It is also incredibly insulting to the many staff who work tirelessly caring for the elderly. I am in awe of the staff at the facility my DF has been in for 3 years now. He NEEDS to be there. It is that simple.

Do join us over at https://www.mumsnet.com/talk/elderly_parents/5474948-cockroach-cafe-spring-in-autumn?page=22

It is a brilliant and safe space to vent and share our stories. 💐

Well it all sounds very fine and noble for these people pontificating about what you should do, but this is an incredibly hard path to walk and you need to find your own way through it. People may have historically cared for loved ones at home but not usually for the extended number of years that dementia takes to play itself out, while being expected to work full time until age 67 themselves.

I hope you find a good setting for your mum and I'm sorry you're dealing with this, it's very hard.

I can guarantee that most of the people telling you to sacrifice yourself haven't done it themselves, particularly for such a long time for someone with advanced dementia.

My grandmother, my father and my aunt all went into care homes and thrived on the additional levels of social contact and stimulation - and later my dad needed care equipment that simply wouldn't have been feasible at home.

Sometimes family care at home is absolutely the right thing - it was for my stepdad - but very often a well-chosen care home can be as good or better. For the person being cared for as well as the ones doing the caring.

Only you know what's best for your family situation.

Most people who do all the guilt tripping stuff have never been at the sharp end of dementia care. Ignore them and do what is best for all parties, including yourself.

For all those people who are critical there are probably double who have parents in care homes and never visit them!

It is exhausting and I'd never criticise anyone that, when needs get too much that their loved one goes into a care home. They have 24/7 care and all the equipment, cooks, domestics, nurses that your parents needs. The argument of 'well they cared for you'...yes they did but you were progressing, developing and growing. There was positive change. With dementia it's in reverse and that's incredibly difficult to see.

A lot of care homes are good nowadays, some are excellent. They're not the institutions of years gone by.

Oh @Freeasabreeze it's a tough one isn't it? I looked after my DF single handed for six years as his live-in carer. In December he had a series of falls in which we were both injured. He went into respite whilst we both recovered.

Despite having been in this home before for respite, this time it wasn't working well and my anxiety was awful. I contemplated him coming home with a 24 hour care package, but his needs are too great and the house is unsuitable.

I was very fortunate to receive a phone call from a nursing home I had visited in August last year. I'd put him on their waiting list just in case and he was now first in line.

I moved him last week. It is an amazing place. It has a CQC outstanding rating and all the relatives I have spoken to rave about it. He is now cosseted and properly cared for with nurses available 24 hours a day. My anxiety has gone and I am sleeping through the night for the first time since 2020.

I've been where you are. I was happy to care for my DF. It was a privilege, it still is, I just don't do it hands on anymore. I don't feel guilty about this decision at all. Dementia is an appalling disease, it affects the whole family. Don't let it destroy you.

Anyone that moans at you is very welcome to come do a shift at dealing with double incontinence and constant repetition.

We "put" Mil in a home when she started falling and Fil couldn't cope anymore. He asked us to find somewhere, so we did and it's been so much easier for everyone.

Picking their loved one up out of shit is not something anyone really envisages when they say they'll care for their beloved mum. It's not heart and roses.

In my experience the most critical people never roll their sleeves up and help with any of the heavy work involved in caring. They rarely visit care homes either
I had no doubts about using a care home for my mum and MIL. The care staff could do all the caring much better than I could and had the correct equipment to do the heavy lifting.
That left time for me to have quality time with relatives that were clean, well fed and comfortable.
My relatives would have approved of my decision I know.

8 years is way too long to be doing this, OP. Of course a care home is the best option - both for the patient and their family. In fact, especially for the patient, so I wouldn't think twice. Get on the phone to Social Services tomorrow, and start the ball rolling.
And, ultimately, it doesn't matter what other people think, because they know f*ck all about it. You do what is best for you, as we all do.

Thank you all, you replies have made me feel better, I will stay off that other site and not look at anymore replies.

My mum had dementia and we muddled along then she had a stroke and literally overnight she couldn’t walk, stand, weight bear at all and was doubly incontinent. She was in hospital for 3 months and then as she needed more care than I alone could give her ( I’m an only child) she had to go into a home.
If you have to make this difficult decision , you visit loads. I think I visited 12. You see if anyone you know can give a personal recommendation. One or two was a hell no from more or less walking in the door. In one I was talking to the matron and a carer came out into reception through a door that led to a bathroom leaving a lady sitting on the toilet in full view.
Another hell no. One had a cinema and gave wine with dinner. My mum was passed watching tv by then and was tea total. It turned out that this particular home was all “ fur coat and no knickers “ looked glossy but the caring standard was very poor.
the one I ended up choosing was not the smartest, or the most up to date. It was spotlessly clean. It had staff who had been there for years ( very rare) and the care was great. All nurses had been trained by the local St Christopher’s hospice on end of life care. Mum was there 2 years and died there peacefully. Good care homes do exist.

My DM is in nursing home, my sibling and I kept her at home as long as we could. My sibling was more keen than me to keep her at home. Looking back at those years I neglected my DC, my DH and my own health and wellbeing. My DM’s quality of life is so much higher than the one my sibling and I could give her.
You have to do what is right for you and your own family unit. Who cares what someone on social media or IRL says, they haven’t walked in your shoes?
Now I visit her twice a week, sadly she doesn’t know who I am anymore but it’s still nice to be a visitor, listen to music with her and tidy her clothes etc.

@Freeasabreeze Look for a nursing rather than a care home if she has complex needs. My DF is on the dementia unit within his nursing home. The staff all have specialist training and although he's been there less than a week, they already understand his physical and verbal cues when he's communicating with them.

I found the CQC website a good resource, then I spoke to people I knew. I also used lottie.org to give me a shortlist of suitable homes and cross checked it with the CQC.

I'm looking forward to being a daughter again rather than a carer now.