To not want to care for my mum every morning?

[Partiallyclosed]

First of all I need to say that the title makes me sound an awful dd but hear me out, so sorry it’s long winded.

I am 50, married with a 17 year old ds and 15 year old dd.

My parents are in their early 80’s. Dad is in good health but sadly my lovely mum is not well. She is bent over with osteoporosis, has a pacemaker/heart disease and has had Alzheimer’s since 2017. As with this awful disease, she is getting worse as time goes on.
If you met my mum you probably wouldn’t think there is too much wrong with her (other than her physical issues as she is bent over with the osteoporosis and looks so old) but we see such a huge difference in her and her capabilities. Mentally she can be very much like a small child now.

Over the last few years my dsis and I (dsis also lives very nearby with her partner) have started to help mum and dad quite a bit. My sister works full time running her own cleaning business and will pop in a couple of times a week and also cleans once a week for them.
I go round at least 5 times a week to help them. I was washing mums hair but insisted they get a hairdresser in once a week as I’m not the best at blow drying! I change and wash their bedsheets once a week, I order all of mums medications and collect them from the pharmacy, I cut mums nails for her, organise her wardrobe and clothes (she has a tendency to mess thing up and put stuff away in the weirdest of places), I organise and keep all of her hospital and medical appointments, do all their life admin, take mum to her day centre once a week etc.
On a Tuesday and Thursday I wouldn’t pop in as I was working but sadly was made redundant a fortnight ago so have been popping in every day since.

The problem is that my dad is becoming overwhelmed with being mums carer, it doesn’t come naturally to him and he gets angry that his life is over too and will often say it’s all a burden to him. I feel so sorry for him but truly believe that if I said I’d would give up my life and care for mum full time then he would happily take a back seat with it all (this does annoy me as I wouldn’t and won’t dream of asking my dc to care for me at any time but dad is old school and believes daughters should help out).
For a long time he refused any outside help, he said carers were a waste of money (he is very tight with his money) and mum wouldn’t like people in her house caring for her (this is true she will make a fuss but most dementia sufferers would be the same as they just don’t acknowledge they are unwell).
Money is far from an issue here for they have hundreds of thousands in the bank.
A year ago, I did eventually insist they got a career in as the stress was making me very unwell (I was close to a breakdown) and I was doing everything like their washing etc which I’ve now made dad do as he is more than capable of doing washing and hanging it out. I have these daily anxiety and gut issues which have been very bad over recent years probably exacerbated by worrying about my parents all the time and just couldn’t do everything.
Anyhow, I arranged for a lovely lady carer to come in, initially once a week for companionship and to give dad a break and then we were to up the care as time went on. However, this never happened, dad insisted all was ok (but would moan to me all the time that it wasn’t), and eventually let the carer go.
So, currently, apart from the once a week at the day centre where mum goes for the afternoon, my dad has no other help apart from me going in every day and my sister a few times a week.

The issue now is that my dad moans every day that he is struggling with mum every morning and that she is getting worse. She often refuses to get in the shower, doesn’t wash herself properly and is now not dressing properly. Yesterday I went round to find her in the trousers she had been in all week (with stains down them) and wearing a winter cardigan buttoned up with nothing on underneath. I helped her get into different clothes but it was hard for she kept saying she didn’t want to wear anything else and that she does not care what she looks like. This is heartbreaking as my mum loved clothes and always used to dress so lovely. She also tells me every day she wants to die which crushes me.
I would love to be the person to go in every morning and help but the truth is that I feel so poorly every morning, I am riddled with anxiety, have had such an exacerbation of my IBS/gut issues recently that I need to be by a toilet every morning and just don’t have it in me to care for my mum every morning whilst feeling this way as it’s such an overwhelming emotional thing to care for a parent, a professional carer obviously doesn’t have this emotional attachment. Watching your lovely mum’s brain waste away is such a sad thing to witness. I also have my dd to get ready in the morning as she has inattentive adhd and if I did not shimmy her along she would be in bed still at midday. My dog also needs walking in the morning (he’s a rescue and has anxiety issues), I can’t just give up on them to go care for my mum.

I have told dad all of this and he accepts it but looks very disappointed and upset. When I first told him I’d been made redundant his face lit up like a Christmas tree, he said it was for the best as I could now take the ‘burden’ off him and become mum’s carer! It makes me feel such a bad daughter to say no but surely I need to put my mental and physical health first? I also need to find another job but can’t do this if I am crumbling away physically and mentally.
So today, I have contacted a care company to ask if they can come in and help every morning.

I feel like a failure but the cold hard truth is I don’t want to be my mum’s main carer and that makes me feel like shit.
AIBU?

OP whether you actually get a job or not in the near future I think you really need to invent one. In the coming days / week you will have several interviews so won't be available to your dad. When he says "What am I supposed to do?" you need to bat it back to him; "I'm not sure, try X / Y / Z. Have to go now..." Gradually reduce his reliance on you.

Once you get your new job (real or imaginary) it will be full time, 5 days a week, bit of a commute, some training / overtime also needed so really you can only commit to a couple of visits a week as you will be out of the house 10 hours a day from now on. Once he realises you truly are not at his beck and call he will have to either step up himself (which sounds unlikely) or accept carers.

If he is capable of bathroom renovations he is well capable of taking care of his own wife and his own home.

I got guilt tripped into looking after my parents. They were very manipulative, I already had problems of my own ( menopause, undiagnosed autism). I was slowly and surely heading towards a breakdown. My husband was unsupportive I honestly wish I had upped and left them all to it. Look after yourself first and foremost because honestly noone else will, take emotion out of it get outside care for your mum and be prepared to get it for your father too , good luck

You will have to learn to be impervious to your father's anger or guilt tripping or whatever he lays on you when he doesn't get his own way.

I know many are suggesting care homes and it is something we are going to have to consider but I am on quite a few dementia carer support groups and the amount of people who say their lo cry and beg them to come home when they visit them just breaks my heart. If my mum did that I don’t think I could recover emotionally. Just the thought of knowing mum is in a home and miserable would kill me. I really don’t want her in one until she is completely cognitively impaired tbh.
I want to try the first step to start with and that is to get carers in every day. I am hopeful this will take some pressure off us all and will give us some respite for a while before we have to consider a care home, I appreciate that time will come and the care respite in itself will give us time to check out care homes in our area and perhaps try a few breaks in a home first.

Again, I truly feel for all of you going through this, it really is so hard. I have always said I will stick by my kids through thick and thin as I brought them into this world but never in my mind did I believe that I would also have to care for my parents, naive I suppose but I never saw dementia coming our way, it’s blindsided us tbh and seeing my dad who I thought was a capable, fun loving kind of man change to someone who constantly gets my back up and seems to now see his wife of over 50 years as a burden is bloody hard going.

I think that you need to speak to you dad like you are training a dog. When he is demanding and unreasonable like that, ALWAYS say no. He needs to know that the world has changed and so have his options. Give him either/or options, like “I can be pick you up at 1:30 or you can wait until tomorrow.”, “You get the nurses to come in and help OR We start looking at nursing homes.” Just don’t enter into further argument. “Dad, I’ve told you your options. You get to choose between A&B. That’s it.” He sounds like his world is so out of his control, he needs to control you.

Notamumsad I truly understand. I am awaiting an adhd diagnosis for myself so find all of this so mentally overwhelming. My dh doesn’t understand, I do get that he has had enough of me always talking about my parents and coming home crying and frustrated but all I get from him is that he is going to go and have a strong word with my dad but he’s known my dad for over 30 years and knows darn well it will make matters so much worse for me. He’s lucky as his dad gives him zero hassle.

dad thinks dh should support me financially but as dh says, if I give up work and become mum’s carer then he, dh, is actually supporting my dad whilst he has hundreds of thousands sitting in the bank!

Your DH is spot on.

I should also add that i grew up in a family where i was one of your daughters in this scenario. grandparents care subsumed my childhood - and i had a very weak, broken relationship with MY parents as a result. if anything, the care my parents provided just delayed the inevitable professional help coming in, and nearly broke one of my parents. it was an horrific few years towards the end and i moved out as quickly as i could from that environment, where my parents generation were being run into the ground while neglecting (yes, i use that word carefully) their own children due to the increasingly selfish demands of grandparents amidst dimentia .. not being able to leave them alone in case they burnt down the house, constant visits to pharmacy/GP/hospital, whole weekends spent cleaning a property and tidying a garden no one had kept on top of for years.. exhausting.

you have a duty towards your own immediate family and your dad CANNOT be left to take more than you are willing to give - you don't deserve this unfair level of expectation to just throw away your whole life and family to care for them when they have the financial freedom to buy in support, and he's willing to martyr you for it.

We went through this. I very much recommend ypu organise live in care for your mum. It will take the pressure off your dad and enable you to visit as a daughter rather than a carer. I think it will give your mum dignity too.

As they get more frail they need someone that can get them up off the floor. That won't be your dad.

Try and spend some quality times with your dad too. I neglected mine when my mum was like this and he died very soon after. I regret it a lot.

You are right to set and keep boundaries. You need a proper conversation with your Dad and Sister about what is in mum's best interests.
This could well be a care home. There is money to pay for a really good one. My mum has dementia and has a sheltered flat. But the moment she becomes unsafe then if carers are not enough, it will be a very good care home.
I love my mum e ough to make that hard choice for her. Fortunately I agreed this with her before deme tia started so I know what her rational self wanted

runninglady55 it is so wrong isn’t it? I know it’s a generational thing and women from previous generations WERE expected to care for older relatives but my dad knows my dc come first and always will do. I love my parents very much but my dc more so (God, I feel awful writing that).

Noone wants to become a carer. I’m not sure why your dad thinks you long for the role any more than he does.

If they can afford it, having a live in carer may be much better for your mum than going into a home. We are just going down that route with FIL, looking after him has got too much for MIL

legalbeagleneeded I have suggested this many times. They have a large 4 bed bungalow with 2 bathrooms and could actually section off the back bit as a self contained annexe for a live in carer but of course I’m ‘interfering’ by suggesting such madness!

seeing my dad who I thought was a capable, fun loving kind of man change to someone who constantly gets my back up and seems to now see his wife of over 50 years as a burden is bloody hard going
What this tells you is that his Mr nice guy persona is a thin veneer, it is contingent on everything going in his favour and him able to get what he wants. As soon as the going gets rough he's Mr angry.

Jesus some of the replies on here, Just have no clue, how gruelling caring for a loved one, let alone one with dementia is.It is exhausting, lonely and utterly,utterly unrelenting and your dad is likely very depressed to boot.Her father just wants someone to vent to He loves his wife and wants yo do his best by her.That said he does need the carers to come in, and if possible to increase the daycare dor your mum so that he gets decent breaks.Has your mum got a social worker ?

Oh OP, my heart goes out to you. This is such a difficult situation and having your dad load guilt in your shoulders is awful.

As difficult as it feels, I would arrange a care home placement as quickly as possible. Your dad is being incredibly obstructive to in-home care and when left to his own devices he's deeply negligent. Leaving someone in the same pair of trousers all week is grim, and that's just the stuff you see.

I'd be concerned that he takes his frustrations out on her when they are alone.

Your obligation is to your mum and you have the power to do the best thing for her. She needs to be in a clean safe environment even if it is distressing to her to make the move.

YANBU. They need a care package and maybe more for your mum. Could they move to assisted living or similar for example? My mum is doing what you’re doing but with a small army of care staff and a housekeeper… don’t burn yourself out. My grandad sounds like your dad except things became so bad he eventually accepted help and they now have proper care. Even with that it’s hard. It’s also very expensive, but it’s necessary for my mums sanity and also their own safety tbh. Good luck Xo

OP, as others have said, caring for a person with complex needs is a job for a professional. It doesn't matter if you are willing or not, because you really can't run yourself into the ground trying to do it. There are lots of things where you speak to a professional and get them to do the job, and this is one of them. I mean, you wouldn't rewire your house if you weren't a qualified electrician, would you? And personal care for your mum is something that a suitably qualified carer should be doing. If you were just getting her a meal in the evening and she could bathe, toilet herself, get herself into bed, it would be manageable, but she can't. Please just say no.

Google Carers Fatigue and contact SS for a carers assessment and a care assessment for your DM. You cannot be what your DF wants and unfortunately you’ll need to be quite blunt and firm.

And another thing to note is that if your DM deteriorates a lot it will very much limit your choices of care settings later when she, almost inevitably, needs 24 hour care. My DF ended up in a home o hated because we literally had no choice.

You do have to be proactive. One person cannot do this.

You DM needs to have a proper care schedule in place, at least every morning, better still twice a day. A carer can wash and dress her, give medication and just give you all some breathing space. Your DF's very unreasonable thinking it's your place to do the caring, it's spoiling your relationship with both of them. I've cared for my DM but that was with a carer visiting 3 times a day and it was still difficult. Time to refuse to help until your DF helps himself, he has money to pay for good quality care and it would be the best investment for all of you

I don’t have much useful to add, other than I totally get it. I’m the same age as you but my kids are a bit younger and both my parents need care. Plus the hormones all over the show. I’ve never felt so overwhelmed and stressed out in my life and sometimes it seems like every thought is an effort.

Of course you need help.

I wouldn’t and won’t dream of asking my dc to care for me at any time

This is important, I think.

I have now seen umpteen people age and say this kind of thing when they are younger and then it slowly changes as they age until they are ending up putting pressue on their children to help. One way or another. Not everyone, but many do. Things like just not feeling comfortable accepting help from carers, it being 'easier' to accept lifts to regular hospital appointments than get an arrangement with a taxi etc.

And so it is important right now - for your children's future happiness - that this isn't something you just say but something they see you model with your own parents. Your actions here, in keeping strong and fair boundaries, are what will help shape what they expect of themsleves in your older age - and how much guilt they feel (or not) if they cannot meet the same standard.

I've been where you are. The best advice I can give you is that you have to be really firm with everyone - as in properly blunt, take-it-or-leave-it firm.

Tell your Dad that if he wants your help then carers are non-negotiable. He cannot complain about the caring burden and expect you to pick it all up. The carers come in and that's final.

When you are asked for help, set boundaries - otherwise it's like trying to catch a waterfall in a bucket, you'll just be constantly overwhelmed as there's no end to it. If you need help I'm available at 1pm so you will have to wait. You HAVE to make time for yourself otherwise you end up feeling burned out and resentful.

Tell your sister that you need to be honest with her and that her standing on the sidelines issuing instructions needs to stop. She's within her rights not to get involved in care, but the trade-off is that she doesn't get to tell everyone else what to do.

Good luck. It's a terrible disease and the impact on my Dad has been profound (Mum died last year). But we got through it and we're all closer as a result, and although I miss my Mum more than I can say, I'm glad she's not suffering any more.

I had similar with my DM who was a full time carer to my DF. She was upset, miserable, exhausted and they rarely left the house. She would moan to me about her life but refused to get any help in and said she had no choices or options anymore. It was tough but I had to say to her that she did have options they just weren't the one she wanted and DF was never going to get better no matter how hard she ignored the situation. In the end she got a carer in every morning but then she had to go into hospital so DF went into respite care and ended up staying in the home.

They are both much happier now as DM has some of her independence back and DF is surrounded by company, carers and has activities to keep him interested everyday.

Just wanted to let you know that you are not the only one out there in this situation and sometimes you need to take a stand to change things. Good luck.

Agree. My DM used to say this.

And then as she deteriorated she begged us not to put her into a care home. We managed to keep her at home but it was very hard, although on balance I think it was right for her as she became very frightened of strangers towards the end. So although she didn't know exactly who we were, she knew that she 'knew us' for some reason and there was trust there - I could always persuade her to do things that the carer couldn't (especially if it was a new carer).

I think you do have to accept that a part of your mum has already gone. What you’re now doing is trying to find that best solution for the lady in front of you who isn’t the same person as she was 20 years ago. There has been a lot of dementia on my husband’s side and it is just heartbreaking but the disease has taken the person you loved and their personality, actions, things they say and choices are most likely not what they’d pick if they could.

The current environment is not sustainable or safe. Trying carers seems sensible but at some point a home may actually be the best thing for your mum and for you. You seem to be carrying an awful lot of guilt and expectations but it would be terrible if your caring responsibility took you down.