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?

When you say you have LPA, do you mean you have both sorts - financial and health and welfare? You haven't mentioned your mother's views on having carers or on going into residential care. You could only (legally) arrange this with her complete agreement if you don't have power of attorney for health and welfare, without some sort of care order, which if SS have already visited, doesn't seem very likely. People don't seem to understand that "putting someone in care" is not something you can do easily. I sympathise with you fully. I looked after my mother for ten years (living in the same house) and it is hugely horribly demoralising and upsetting in a way that I don't think anyone can understand unless they've done it themselves. But my situation was very different from yours and your pressures are extreme. As a PP suggested, contact Age UK. I think their resources are not spread evenly through the country but you might get some support. They could do nothing for my mother (south west England) but helped my mother in law and my husband's family (south east). I also had support from Alzheimer's Society. That was really helpful with relevant information but also I got support visits from them as her carer. But above all, please please look after yourself.

Thank you everyone. I’ve just come back from looking after mum, I ended up taking her out for a mooch around the local small supermarket and it was lovely to spend time with her. She was quite good today, quite upbeat. Most days she says she wants to die but not today so that’s a good day in my eyes.

pinkginfizz9 whilst I agree with a lot of what you are saying about dementia being relentless etc and dad being depressed which he most certainly is hence the reason why I help as much as I can and really do feel for him in that sense, he still a complete arse at times. He has said some very mean things to my mum and to me also which is hurtful and totally unacceptable and he is the type of person to not see the hurt he can cause. I too am depressed and going through it but remain kind and courteous auto my parents always but that’s not always the case with dad. And unfortunately mum cannot get a social worker because they have far to much money, you have to have less than £23,500 before the government will help you.
Thank you ConvallariaMuguet I am sorry you are in this situation also, sadly I can’t offer much advise other than offer you warm thoughts and solidarity.
StGuffersOfTheVillage both dh have said this time and time again. Mil passed away 3 years ago after a battle with cancer, not once did they ask dh or his brother to help, FIL did everything himself and even now just gets on with things and never asks for anything. Both my parents are only children but we’re lucky that their parents went quick and didn’t need help, I think my dad forgets that often.
WaterIris I am sorry you have been through this, it really is a wicked disease and one I wouldn’t wish on anyone (or their family).
Bunnycat101 you are right. I’ve read that you morn twice with dementia, for the lost person whilst they are still alive and then again when they pass.

My mum lives with me and my daughter, she has Alzheimers.

Every day she goes to daycare, they pick her up at 10am and drop her back at 4. Without this I would find it so hard.
I think if your mum is to stay at home then maybe a carer every morning to get her ready and then daycare every day which would give your dad a break.
Before my fathervpassed away he was bedbound and I found it utterly exhausting rushing in after work each day. It is much easier for me with mum bring here.
It's very difficult but please don't feel guilty. I know for sure I do not want my daughter having to care for me when I am elderly. Your Dad also had the financial resources to do this. Xxx

herbetta after witnessing my poor mum suffering so much I must get myself on hrt, I want to prevent all of this, if I can 🤞
Thank you CheshireCat1 it’s just be so hard when you have a parent living alone, my friend is in the same position with her 90 year old mum, she’s exhausted too.
dickheed I am sure that the majority of people who say they would do it have no experience or concept of what dementia does to people, like my friend, her mum has COPD a horrible condition but is compliant and has full health cognitive health. Dealing with an Alzheimer’s patient is on a whole other level.
Thanks for that GoldfincTart
Floatlikeafeather we have both health and welfare POA and financial POA. Mum is at a stage where she changes her mind frequently over things (ie within minutes) due to her memory loss. One moment she will ask why on earth would she want carers in as she is capable of everything, she will say she showers, cooks, cleans, does the shopping etc then the next minute says she wants to die or go in a care home then a moment later would say she never wants to leave her home and a care home would be the kast place she wants to go!

I honestly think you are amazing PhoenixIsFlying, having someone with dementia live full time with you must be so very tough at times. I agree that day centres are great places, I am currently trying to get mum in the day centre more than once a week as they are wonderful there. Getting a career in every morning is the current goal, I am sure this strategy would help for a little while longer before we consider a care home x

Has your OH ever sat down and explained to your father the impact this is having on you? Sometimes 'old school men' like your dad, respond better to being told stuff by another man. Just a thought. Not meant to be sexist.

We had carers in 3 times a day towards the end for my father who had dementia.

My niece is a carer in a really nice residential home for the elderly and she said the distress of the dementia patients got worse mainly when they came into the home.

This is why we got carers in so frequently at home instead. Mixed it up with respite and day centres sometimes.

So you are doing the right thing OP, this needs to happen.

And just to add, care homes are very very expensive it was a lot cheaper to get the carers in 3 times a day.

I feel very sorry for you and very sorry for your mother. What would your grandparents think if they knew she wasn't getting access to the money they left her when she requires it for her basic needs?
Your Dad sounds very controlling and I fear that he might be rude to any potential carers in order to get rid of them.
You need to be very direct with him and go over his head. If you just withdraw he might not see that your Mum is properly looked after.
It's a pity your sister hasn't got your back more strongly. It sounds as if she's willing to do cleaning but hates personal care, which is fair enough.
Is your Dad kind to your Mum in any way?
I think you need to get morning carers in asap. Ultimately your Mum might be better off in a Nursing home. Regular visits there will be much less stressful for you. If your Dad doesn't immediately agree to carers and to you managing that so he can't just stop them I think you're going to need to have a big showdown with him for your Mum's sake.
He would not be made homeless if your Mum went into a nursing home, but there might be a charge on the property after he dies.
You are doing enough to claim Carer's allowance even with Carers going in in the mornings but your Mum would need to claim Attendance allowance first. Someone above said to claim it for both parents but I don't think your Dad sounds eligible from what you say.

OP you need to contact your LA adult safeguarding team. There is no financial limit. Your DF is not providing appropriate care and is actively refusing help from professional carers that they have funds for.

I understand that your DF is monopolising your attention and you are caught up in family dynamics but you need to prioritise your mother and her care needs.

Your DF is not meeting your DMs care needs physically or emotionally. It is also concerning that if push came to shove (ie you weren't on hand) he would put his own needs (say of shopping) above her safety (leave her in the car) when he/they can afford the alternative.

FIL was like this. He was blinded by anger and resentment and believed he was the victim.

The care assessment told him he had to have carers and it wasn't his choice to have none or daughters provide care. Because his care was inadequate. MIL is now in a care home and no longer dependant on him.

You need to ask yourself if your mother is safe and her needs are met if she is dependant on her DH. If the answer is no and you feel obliged to keep her safe/meet her needs, you need to contact the adult safeguarding team for her sake and yours and that of your family.

Mum is at a stage where she changes her mind frequently over things (ie within minutes) due to her memory loss. One moment she will ask why on earth would she want carers in as she is capable of everything, she will say she showers, cooks, cleans, does the shopping etc then the next minute says she wants to die or go in a care home then a moment later would say she never wants to leave her home and a care home would be the last place she wants to go!

@Partiallyclosed when we went through this stage with my Mum, it lasted about a year. She had moments of clarity ("why are you talking to me like I'm a dotty old dear?") but they gradually became fewer and farther apart.

The issue with your Dad is that when you live with someone, you never get that 'step back' moment where you notice the deterioration. It's the boiling a frog situation. Whereas when someone visits who hasn't seen her recently, the change in mental capacity - and the person's needs - is really clear.

Just to add, not being clean or appropriately dressed - remaining in nightclothes, unwashed body, dirty clothes, naked under a jumper - were all red flags that a person wasn't being adequately cared for. Just ask yourself, if you visited your DM in a care home, would this be OK?

100% what Pocketsand says.

pinkginfizz9 whilst I agree with a lot of what you are saying about dementia being relentless etc and dad being depressed which he most certainly is hence the reason why I help as much as I can and really do feel for him in that sense, he still a complete arse at times. He has said some very mean things to my mum and to me also which is hurtful and totally unacceptable and he is the type of person to not see the hurt he can cause. I too am depressed and going through it but remain kind and courteous auto my parents always but that’s not always the case with dad. And unfortunately mum cannot get a social worker because they have far to much money, you have to have less than £23,500 before the government will help you.

No that is not what a social worker is.They are professionals who come our and assess what care your mum needs and work with you to get it put in place regardless of income. Ypu need to approach adult services in your council and explain the situation. They have a duty to safeguard vulnerable people like your mum and me sure she has suitab care ( which your mum will have to pay for)

Just to clarify (for I fear I’ve painted my dad in such a poor light that he seems like an evil bastard lol) but my mum isn’t being neglected or abused by him. He is a cantankerous old sod and is relying too heavily on me and my dsis but he does love my mum. He cooks for her, she has three meals per day, he does make sure she has showered, he also takes her out shopping etc. He does what I suppose is in his capabilities (some people are better at caring than others) but he is obviously depressed and overwhelmed.
Yes, he is relying too much on me and expecting to much of me, which in turn is making me feel depressed, overwhelmed and unable to cope also. It feels like quite an impossible situation most days. The whole dynamics of our lives have changed, the only life I’ve know with a caring, kind mum and a happy, jokey fun loving dad has changed beyond recognition by a horrible incidious unrelenting disease which I truly had no idea of it’s evilness until it crept into our happy lives. My dad isn’t a bad person. I feel bad even making this post as it really looks like he is but he has expected too much from his daughters and it is now up to me to do something about it.
The carer has contacted me today, she’s going to come by next week when mum is at the day centre and have a chat about our and mums needs. We will work out a plan and hopefully this will be the start of something a bit more doable and workable for us all.

And just to reiterate, I have spoken to social services several times, they came the end of last year to assess mum and dad and we also had an occupational therapist come too. Apart from offering to install grip rails, help in the bathroom etc there is literally nothing they can offer because of my parents finances.

pinkginfizz9 sadly, that wasn’t our experience with our local ss last year. Once they knew my parents had money they didn’t want to know. The social worker was lovely but said there was literally nothing they could offer.

Honestly ss has to see to vulnerable people regardless of their financial situation- you can insist on this.
My mum was in rehab when my dad passed and I requested she stay a couple of weeks longer and we would pay - the care manager said no chance unless social care assessed she couldn’t be cared for at home - rehab equally couldn’t discharge her until social care had done an assessment. My parents weren’t just over 23,500 but way, way over.
They had previously been involved every time my mum was being discharged from hospital or a care home as well - the financial stuff was done separately altogether. Not saying they don’t try to bin it off if they can eg/ can you do it - but they have a duty of care to ensure all is well. It is potentially easier for them to ignore as she has her husband still ‘there’ though as well.
There are services such as drs, dentists, police that have to refer noted concerns too, and ss have to check- maybe tell GP what is happening?
If you can only look to organise things yourself then I would recommend a decent care home though it’s not as easy as booking yourself in for sure and her needs would have to be assessed by someone to ensure she was in the right sort of care provision.
Your mum or dad can refuse support - until it becomes dangerous at least. If that is the case then I’d step back from any care and perhaps just visit/take her out once or twice a week. You should think what you estimate you could comfortably do to support and then halve it - tip from elderly parents forum which is pretty accurate.
All the best - it’s so hard.

hulahooper2 · Today 09:37
Yes get help if you can , but I would do as much as much possible to help “

Good for you. OP is not in a position to do so (and I’m guessing that perhaps you haven’t yet reached this stage with your own parents?)

This is sad. I listened to an eye opening podcast recently about why there are so many more women than men in care homes. Basically it's because men won't care for their wives and ship them off to others instead. Disgusting really.

They need to get carers in. Do NOT do any more. Sorry to say but your Dad sounds like a selfish fucker. I am sorry about your mum. It’s a horrible disease.

Wanted to give you a handhold, OP.

I'm hesitant to post much about my personal experience, but essentially my partner and I ended up moving in with my in-laws because FIL couldn't be left on his own due to dementia. To cut a long story short, his dementia progressed from "you can leave him on his own but check in fairly frequently" to "double incontinence". I had two young kids and my eldest is autistic. The best thing we ever did was hire a carer to come in during the day.

Dementia is vile. It's a long goodbye. It leaves a shell behind but you can't even dismiss that shell because there are occasional glimmers of that person inside, and the hell of it is you never know when you'll get those glimmers.

YANBU to not take up caring full-time. You mentioned in one of your posts about hearing a dementia patient wanting to go home, while in a nursing home. My FIL often said he wanted to go home...while sitting in his own home. This is a thing with some dementia patients! He'd get up, go get his jacket on, and I'd have to stop him going out the door "to go home." There comes a point where you need to call on a community to help. Don't break yourself going beyond that point, don't push yourself to find that point either.

contact your local carers' centre, also age uk for advice.
all the best.
and local alzheimers group, esp if they have singing for the brain session.
music can be calming and helpful.

MsJinks I will try contacting social services again and see what they suggest.
Fruitjellies That is so very sad but not surprising.
Scattery thank you so much. Everything you have written resonates so much. It is like being on some awful emotional rollercoaster. One day mum doesn’t seem too bad, dad will then say all is ok and he doesn’t need outside help etc then the next day mum has been crying saying she wants to go home (like you say, she says this whilst in her own home) and when questioned she says she wants to go back to her childhood home. Other times she wants to go home because she thinks she is on holiday. Every day she says she wants to die (heartbreaking hearing your mum say that). Dad struggles even with these things, he will go to pieces if she starts becoming incontinent or something like sundowning etc. You are so correct in saying it’s a long goodbye, that really seems like the hardest part, it’s like constantly being in some kind of long, drawn out anticipatory grief, it’s really hard going.
alexdgr8 I will do that this week, thank you.

Yes it’s an age old problem. People are living longer now and there’s just not the resources to go around. In your parents case their lucky their able to pay for care, so you’ll have the freedom to pick snd choose who you get to help.
My mum is 92 and very frail, like you I didn’t want to visit everyday. I asked social services to assess her, they came and said she needed carers 4 times a day, they did ask me what I was willing to do, at that time aged 63 I was still working part time and caring for Grandchildren so the answer was not a lot.
I do her medications, shopping, change the bed and all her bills and banking, and as an only one its enough.
I feel terrible guilt, and I feel I’m pulled in all directions, hardly any time to myself and even when I have I’m on call 24/ 7 too. Decide how much you can realistically do, without making yourself miserable and unwell. Good luck it’s difficult.

Yourself & your 2 children are your first priority

If you don't work, how will you afford to live?

If you were made redundant, you can claim contributions based job seekers allowance which is approx £78 per week & your redundancy money is not taken into account for a certain time period. Secondly, it means that your National Insurance "stamps" are paid towards your state pension & other benefits. I don't know if you can claim carers allowance on top of that or just one or the other. Please claim via www.gov.uk the money is not back dated, so it will only be paid from the day that you claim.