How do you cope with family carer breakdown?

[CornishPastyLover]

This is where I feel we are heading.

Mum has advanced Alzheimer's which was very much exacerbated this summer following a fall in her garden. She fractured her neck which required a 3 week stay in hospital. The hospital allowed mum to constantly soil the bed and now that has become her new normal. She has been back home for a few months and she is now double incontinent and soils herself throughout the day, she has very limited mobility and just sits all day in her recliner (I take her in her wheelchair around the village whenever I can but tbh it's not very enjoyable as mum moans the whole time).

I couldn't cope with changing mum's nappies so we now have 2x carers in 3 times a day. The morning carers come to wash and toilet mum. The other carers come in to change mum as she will have inevitably soiled herself. They also come to put her in bed at 7pm.

It is so so sad to see this quick decline. Mum was diagnosed in 2018 but up until the fall she was fairly mobile, I would take her to a day centre 3 times a week (which she loved) and she would happily walk herself in and out there, we would have little walks around our village, dad would take her for drives, she could take herself to and from the toilet with only minimal help. She now sits all day in the recliner, luckily she can still feed herself (sometimes with a little help) but that's about it. She has lost most of her conversation but thankfully is still her lovely smiley self but it's heartbreaking to see. This is now her (and our lives) and it sucks.

Dad absolutely pointblank refuses to consider a live in carer or to see mum placed in a care home. I don't know how much more I can keep doing this though. Last night the morning carer called to say she thinks she has Norovirus and is very unwell with constant vomiting and diarrhoea. Mum was her last visit yesterday before she rushed home and was ill. I am now on anxious tenterhooks fearing mum will come down with it, if she does I truly have no idea how we will cope - I have emetophobia so haven't slept all night stressing over it all.

My sister and I feel we are heading towards carer breakdown, this has been such a long and arduous journey and this summer has felt like one of the final nails in the coffin.

I don't think SS will help as we have had them in 3 times over the last few years and they say they can do nothing as my parents have money.

How the heck do you get through this?

I don’t think your dad is being fair.
Isn’t this what we save for all our lives? To pay for care when the time comes, not let our busy adult DC with jobs and families of their own run themselves ragged indefinitely.
The wants of those near the end of life do not trump those of others in the prime of theirs.
Hard as it is, as long as you are propping up the situation nothing will change. Your dad is happy to let you live like this!? I find that difficult to believe. It would really taint my opinion of him and make me fear for the future and further expectations of caring for him if he is left alone.
You need to step away with your sister and force a crisis. Give SS and the care agency 72 hours notice in writing and force things on. Your dad won’t cope without you.
I hope I never do this to my children.

Your Dad will have to do the solo cleaning /toileting of any norovirus OP. Hopefully that will focus his mind on what is needed. 💐

What part of her care are you doing now, that the carers aren't doing?

The main thing that stands out from your post is your grief at progressively losing your mum even though she is still alive. You give a painfully moving example of trying to do something for her that she used to enjoy - going round the village - and even this small thing has been taken from you and neither of you enjoy it anymore.

This won't be different in a care home. In fact she'll probably be getting much the same level of care as she is now, only in unfamiliar surroundings. A live-in carer won't work as she needs 2 people to do her care, so you will still need the 3x a day visits.

I'd suggest what you need is a break (a proper one, not one where you ask for updates everyday), and some counselling support for the pain you experiencing as your mum deteriorates.

We have two carers in the morning who will come and get mum out of bed, change her pull-up, clean her up and then shower and dress her (takes about an hour). Then two more carers at 2pm will come and change mums pull up again (usually takes half an hour) and then 2 carers at 7.30pm to clean mum up again and put her in bed (this takes about an hour).

Dad refuses to pay out for anything else such as a sit in service and so between my sister and I we will pop in almost every day, check on them both. I help with all the financial stuff and all mum's medical stuff (hospital appointments as mum also has heart disease and breast cancer). Between my sister and I we help keep the house clean, change bed sheets, wash bedding and my sister cleans the house once a week (she has her own cleaning business). I will often make mum and dad lunch to take some of the pressure off him as he doesn't really enjoy cooking but obviously has to prepare and cook meals now mum isn't able to. Basically, between my sister and I we try to take some of the pressure off of dad on a day to day basis.

My sister and I are ready for mum to go into a care home, we have tried out best to avoid it but since the fall things have changed for the worse. Dad is paying around £900 for no more than 3 hours a day care and I trying to put it to him that for not a lot more mum could get 24/7 care and will also be occupied every day. When my sister and I are not there mum is just sitting in her recliner watching tv whilst dad potters in the garden and pops in and out of the house. He admits that his life is very restricted and he can't even pop to the supermarket every week without having to ask me to sit with mum yet the moment I mention a care home he gets upset and angry (I do understand why, they have been together for over 50 years). I mentioned it again last Friday and he later told my sister that he was very upset all weekend and can't understand why I would mention such a thing.

The problem is that he is so far into denial even all these years later. He simply will not except that mum has reached this point. I wonder if maybe he feels guilty due to the fall in the summer which has exacerbated all mum's issues. I kept telling him not to take mum right down the bottom of the garden where the path was unstable yet he insisted that mum loves it down there and sure enough they walked down there to have some lunch and mum takes a tumble - I knew it was a matter of time yet it constantly fell on deaf ears, he has never admitted this but I do think deep down he his blaming himself.

I took last weekend off and didn't go in and started counselling last week but I really don't think we will get any long lasting peace until mum is settled in a good care facility. It is an ongoing battle but one I need to keep up with not only for myself but for mum as I believe it is now the best option for her.

Your dad will only accept this if you leave the pressure on him.

don’t make lunch, etc etc. discuss it with your sister and make sure you are both in agreement first.

while he has family doing it he has no reason to agree

I am on complete tenterhooks at the moment hoping and praying neither of them come down with it, if they both do it will be an absolute disaster. I literally can not sleep stressing over it.

It sounds like you are inadvertently enabling your dad's denial by doing so much. He can hide from the reality of your mum's care needs because he isn't doing it.

It's very hard but the only way for this to change is to stop doing so much. He will very quickly realise that he can't do it and that your lovely mum needs to be somewhere she is safe and looked after. You and your sister have done enough, it's time for you to be able to enjoy the time you spend with your mum, as daughters, not worried and burnt out carers. Your dad is being unfair but you will need to go through the pain barrier of making him face reality by withdrawing your labour.

Your dad being angry and upset is not more important than you being scared and upset, OP.

I know, I have had this said to me on another thread I made before and I really have taken a big step back as I was once doing everything for them but the stress of knowing that when we step back my dad let's everything slide. People will tell me if you aren't doing it he will have to but it really does not work like that with my dad. He does not see the mess the house can be in, he can not see towels and bedding needs changing/washing and will happily live like this. My sister was away for a week last week and I refused to do the cleaning, I can not tell you how awful his en-suite looked, it was disgusting, the kitchen was filthy, the bedroom stank of dried urine where mum had leaked onto the mattress protector (I did have to wash that), the list goes on. He is such a very difficult character and it's so hard dealing with someone like this. I often say that it's not actually my mum who is the issue despite being the one with the illnesses, it is my perfectly healthy yet very hard to deal with father.

I have called SS but they don't want to know. We have had around 3-4 visits from them over the last 3 year which I have organised but as soon as they discover my parents have money they say they can not help and pass over the details of local charities. I was hoping that having the carers in 3 times a day may ease some of the pressure, of course it has for the personal care but not for anything else.

If we step right back and leave them in this dreadful mess the carers will think we are terrible children to leave our parents like this when we both live just around the corner from them.

i feel you are repeating your question - or there was a very similar question last week

yiu can’t force him, there is nothing

you either keep going or stop

if you feel too guilty at that stop but tell your dad you are happy to help him visit care homes

and that’s it

fuck the guilt

do what your mother would want and back down and save yourself

You know how so many people “just want someone to listen”

bet your dad thinks you just want him to listen to your rants and don’t need a solution

Yes, I suppose it is and tbh I don't know why that is and why I am having counselling to try and understand myself a little more regarding this whole draining process.

I read the words you have written and totally understand why I need to do this but to say fuck the guilt is so much easier said than done when that isn't part of your natural make up. I am a people pleaser, I am neurodiverse and find it hard to say no. I over-think everything and I suppose I have always struggled with RSD, I hate the idea that I have upset someone, especially those close to me.

One of the reasons I have started the counselling is in the hope I can build up some kind of resilience and become less of a people pleaser and to put myself first for once.

Apart from preparing meals (except lunch when you do it) what else is your dad doing exactly?

So from your list:

Financial stuff - a care home would not do this
Medical appointments- time to have a serious conversation with her GP about how many are strictly necessary, this can likely be cut down a lot
Lunches - dad can make his own lunch, carer makes lunch for mum
Cleaning - ideally dad gets a cleaner or at the very least pays your sister. Appreciate that with your family dynamics you may be stuck.

Sitting with her - unfortunately this is very much a wish on your part not a need. As you have found Social Services don't count it as a care need. A care home won't have someone continually sitting with her. This is the bit that sounds the most about your grief, guilt and sadness.

Oh yes it’s hard - but what you need is to be at the stage when you can say on here

“I need to pull back from supporting my parents so much for my own health , how can I do this when I get so overwhelmed with guilt and love my mother so much “

turn off the phone completely - become uncontactable
put your position in writing to your dad rather than speaking - write a letter
get yourself a star chart or box of chocolates and give yourself a reward for every day you don’t visit or only visit for a half hour - whatever is your goal
?

I can only agree with other posters. And I'll go one step further - you and your sister need to be brave and start playing hardball with your Dad for the sake of your Mum's safety.

So go to the GP and SS and say you are both completely stepping back due to burn out / ill health and they need to get involved as the situation is now one of safeguarding not just care provision.

I'm sorry to say that when someone has advanced dementia and has lost their mobility, is doubly incontinent etc it's the rare family who can maintain care at home, without a vast swathe of carers.

A slightly different situation but we could only get SS and GP involved with FIL who was refusing all care for himself with moderate dementia, when the house, well we'd have been prosecuated by the RSPCA if there had been animals living there.

This is up to you to force the situation for your Mum - I'm sorry. I always say there often has to be a crisis before some elderly carers will acknowledge things can't continue as they are. You are now facing that crisis.

Well, obviously I am not there 24/7 so not 100% sure what he does day to day but yes I suppose it's meal prep and helping mum with her meals, she will usually feed herself but occasionally needs help which he does.

He now does his own washing as I stopped doing that but tbh that pretty much is everything - so meal prep, loading and unloading the dishwasher, the food shop which he insists on doing as it's an opportunity to get out. He potters around the garden and maintains that (it's a large garden) and that's it I suppose?

Thank you - this is a goal I need to work on. I will show this to my counsellor next week and see if she will work with me on this, thank you.

It is hard to see the simple things when you are overwhelmed with the negatives.

Yes, we are in crisis mode, I definitely recognise that. I will speak with my sister tonight and see if we can work together and talk to the GP to see if they can help.

It's great that you're going for counselling, OP, and as hard as it all is, it may that a positive to come out of the situation is that it's sort of forcing you to address the difficulties you have with saying no and prioritising your needs. It's often a crisis like this that makes us face our "stuff" and hopefully going forward you will feel more empowered to balance other people's wants with your own.

"feel the guilt and do it anyway" - it's not so much that you can just stop feeling guilty but more that you can learn to tolerate feeling guilty, even though it's uncomfortable. Guilt doesn't mean you're a wicked person, it just means you're going against some social rule you think people will judge you for. You can learn to tolerate the thought of being judged or thought badly of. It's very liberating.

Please contact both GP and SS. Your parents may have a good GP who is happy to continue involvement but they play no role in assessing for social care or moves into care homes. That's fully under the SS banner. I know you've said they have not been interested but as the situation is now one of safeguarding you can push for more input. I'm thinking in terms of them saying your dad is no longer in a position to continue caring for your mum on his own, with only 3-4 visits per day.

If your parents have above 23k in savings per person, they will have to pay until their savings fall below that. But SS can provide a list of local homes who are registered for care of dementia patients. Aged UK has a very useful financial section. Make sure he is claiming everything as that counts towards fees. Sadly you're looking at nearer 3 times what your dad is paying currently. Average fees are £2.5k

You will have to spell it out to your dad and I warn you this can upset the relationship - until he realises the crisis he is in.

This disease is bloody awful, there's no 2 ways about it

Am so sorry for what you are going through. I share a lot of your anxiety in that I am emetophobic too and also had a Mum with dementia who I was caring for. I always said I couldn’t do it anymore when she became incontinent. Unfortunately she went into a home before that due to wandering and other safety concerns. I lost my mum two weeks ago . The one positive in your situation is you have a sister so you have support in that. I understand your frustration at your dad not paying for services he could afford. It seems a common thing unfortunately. You are being such a lovely daughter and your love shines through from your words about your Mum but you do have to think about your own mental health too.

Can she go into respite for a bit @CornishPastyLover to give you all a break? You may find a bit of distance helps everyone put things in perspective. My elderly parent with vascular dementia is currently in respite care whilst I have a break.

My guilt at first was terrible, but now they have settled, I am enjoying a bit of down time and having a much needed rest. Parent meanwhile is having the best time and has told me they might stay there! They are self funding but lack capacity. I have both PoAs. The home itself is lovely and the staff are great. It is run by a not for profit and is just shy of £1400 a week.

I love my parent very much but I too was on my knees. You have to look after yourself and do what is best for your mother. See if you can a bit of respite arranged and go from there.

Thank you so much. I'm very sorry for your loss. It's a very tough journey isn't it?