Would you spend most of your time caring for an elderly parent?

[ImaHogg]

I have a real dilemma in my life right now, I am probably digging myself a giant hole and potentially causing myself future issues.
I’m 48, married with a 13 and 15 year old and work very part time hours.
I am and have always been very close to my parents. They live around the corner from me. Dad is 80 this year and mum is 78.
Dad is in good health and up till last year was riding a motorcycle. My mum has Alzheimer’s, she was diagnosed 3 years ago and as is the nature with this wicked disease, she is getting steadily worse. She is also in constant pain with osteoporosis.
My dad does not cope well at all, he gets so angry with the diagnosis and takes it out on mum as though she is forgetting on purpose! He says his life is over and he feels trapped and can not even go down the shed on his own. He does the cooking and washing up but really doesn’t do any other housework. He thinks if he keeps badgering my mum to do it she will suddenly ‘remember’, which obviously won’t happen, so subsequently things build up, laundry doesn’t get done, bed sheets go unchanged etc. Even mums hair doesn’t get washed regularly (something my sister and I are going to have to do from now on in).
I spend most of my spare time helping out. Every week I take mum out to give dad breaks, I arrange all her hospital and gp appointments and take her to most of these, I order mums meds and collect them too, I have arranged for her to go to a day centre once a week and I take her there and collect her (although she hates it so will probably cancel it soon!). I have organised financial things for them ie mum now gets attendance allowance and dad council tax reductions etc.
I go round 6 days a week.
My sister only goes once a week, she has no children but works full time, she will do some cleaning but that’s it as she says she is too busy (she’s home most days at 4pm!). She too lives nearby.
Obviously with this disease things will start to get much, much worse and I can already see changes, mum is very depressed and just sits in the living room a lot of the time, she often looks vacant and her short term memory is shot to pieces, she cries a lot. She does perk up when I take her out for a drive etc but goes downhill once she is at home.
I appreciate living with a dementia patient is bloody tough going but don’t think my dad helps as he puts her down and tries to make her do things which the Alzheimer’s just won’t let her do.
I can’t arrange for a professional carer yet as my mum is still aware of things and says she does not want a carer or a stranger in her home, it makes her feel useless.
I am so stressed with it all and find the burden of caring/worrying about my parents welfare 24/7 overwhelming. It feels like caring for children.
To add extra woes, my dh says I am doing too much and we are starting to have heated discussions about it. He thinks my dad is being very selfish expecting me to always be there to do so much and that he should be doing a lot of it himself (ie the laundry, changing bed sheets and washing mums hair etc) but I know he won’t do it so I feel stuck between a rock and hard place, although I admit I wouldn’t want to put this burden on my own dc.
It also pisses off dh that dad doesn’t offer me any money for the help I do even though he knows I struggle a little financially. Mum and dad are very financially comfortable so that does sting a little tbh.
I am concerned how much I could take long term as I already suffer from anxiety and depression. I can see as the disease takes hold I am going to have to help more and more. This will have an huge impact on my life and my dh/children’s too.
AIBU to give up so much of my time and energy looking after my parent? Would you do the same?

Its often not feasible (nor a kindness) for family to look after an Altzeimers sufferer for the 10+ years they will need care for. It’s very unlikely one of two family members could do the 24/7 care required long term, particularly with aggression, sundowning, and physical needs (most times two people are needed to clean up continence accidents, dress, bathe, etc). Life expectancy with dementia can be relatively long, even in the latter stages, when the individual has lost all memory of who people are and has had significant personality changes.

At some point residential care becomes unavoidable given that other health conditions can be managed so well now.

I told my parents that the Attendance allowance (they both received) people had been in touch and wanted receipts for the care they had been receiving with the money or they would lose it.

They then started spending it on cleaners etc.

@Saz12

I’m early 40’s, have primary-school ages DC, work part time, and my (widowed) DF has dementia. He is now in a Care Home. It’s brutal (not the Home, the whole situation).

Whatever you do it isn’t ever enough. WHATEVER you do.

So you need to be tough with boundaries, and ignore the ignorant twats who are “shocked you’d put him in an institution”, having never experienced the sheer appalling horror of Alzheimers. Nod, smile, ignore, and try not to cry later.

Get your mum out of the house (use a reliable taxi company and be briskly assertive that your Mum is going. Get your Dad on side: a day off for him, think up some stuff he’s likely to want to do when your Mum is out - cricket on tv, garden, read, whatever). Aim for at least 2 days a week as soon as Covid restrictions allow. Try to find a Care Home who do daily respite, they’ll be good at keeping your Mum occupied and reassured. On one of those days, get a cleaner into their house to clean and do laundry (assuming your mum won’t accept it otherwise). Tell your Dad this has to happen as you can’t afford to take more time off work to do it for them. Potentially find a “befriender” to visit your Dad on one of those days? Male company always worked for my DF.

Contact adult social services and TELL them they need to asses your parents needs as they aren’t safe. They might be shitty to you and demand to know why you’re not doing it anymore. Point out you have a family and carers allowance isn’t enough to pay your bills. DO NOT FEEL GUILTY. It’s not your parents fault and not is it yours. Be the squeaky wheel - phone for updates, get your parents GP on side, get other family members to call as well.

Your sister visits once a week, that’s fine. You could visit once a week too. If she has “suggestions” then nod, tell her what a great idea they are, and ask her when SHE is going to do it. My sister lives overseas and was fabulous at coming up with things I could do for Dad. Nod, smile, ignore and try not to cry afterwards.

Brilliant post by someone who actually knows what it's like.

Pity her parents aren't good people.
Stockpiling non means tested taxpayer funded benefits meant to buy in care, whilst allowing their DD to run herself ragged, neglect her own family and live indefinitely on the edge of a breakdown.
Not good, unselfish parenting IMO.

Cowbells is right - whatever you do it is not enough - because what the DPs want is their ability, agency and independence back - as if they were young and able again. That's what they want. And it must be hard for them to accept that that isn't going to happen and things will get harder. However you know it is happening so getting in help is the only answer.
And 'helpful' family members who are not doing the work with ideas on how to make their lives happier! Infuriating. As Everything depends on you being able to give yet more of your time to make it happen.

There is absolutely no way on this earth that I will be caring for my parents in their old age. My mother is very likely to get dementia and I have lots of experience with dementia and older adult care and I know that the day to day care is not in my skill set - I will very happily organise and pay for skilled individuals to do the physical caring, I will provide emotional support and find a lovely care home for her to live in, but I will not do the caring.

I was requested by a relative to give up my FT job & home & move in with them. They sold it as, I would have to pay no bills

I would have lost my freedom & lived under their rules

I said no

As a compromise I visit, assist with some tasks & days out & a holiday. They have employed a cleaner & on occasion carers.

Just because someone insists, it doesn't mean that you have to

However it depends what sort of health issues are involved

@Angeldust2810

Another example again of something so simple was over a duvet. Mum told me hers was soiled. I went out that day and bought a new one. All I’ve heard since it’s the wrong tog and she wanted us to go buy one together to “make a day of it!” To the people who are saying just get cleaners in or whatever, has anyone actually ever done this against someone’s wishes? If so, how? Did you pay for it?

Yes, I arranged carers to help get mum up (dad wouldn’t have dreamed of helping her) and make sure they both had breakfast and their tablets. Dad was so rude to them because they didn’t arrive every day at exactly 8am that four different care agencies pulled out. One care agency heard him being verbally aggressive to mum and reported him to safeguarding but he just denied everything so nothing was done. In the end mum had yet another hospital admission (9 in 5 months or so?) and the hospital discharge team insisted on placement or they would instigate formal proceedings (no idea what that meant) Hideous situation.

Lots of "good people " have had their lives blighted by emotional manipulation from old parents.

The language used around this topic is ridiculous. "Wont have carers in" and the classic,"You're not putting me in a home "

The reality for my 97 year old mother is that "the home" is ideal.Too little,far too late sadly

I’ve started to put some things in plan. I’ve asked a local hairdresser to come in once a week, sent another email to SS, and am hoping to get mum in the day centre an additional day.
Yesterday my boss called, my furlough is ending from next week so I am back to work, at least this will give me Tuesday and Thursday off.
Little steps but I’m trying.
I wish my dad would get on board though, he is still the biggest hurdle. He was very nasty to me yesterday. I was late coming round to sit with mum so he could go to the dentist. I apologised and said I was late because my boss had rung me to discuss my return to work, he snapped back ‘Well that’s not my problem, you should have been here earlier and you should have told your boss to FUCK OFF’! - I’m never going to change him am I?

The saying is

Put your own oxygen mask on, before helping others

You need to protect yourself, your immediate family, your health, your job first

@ImaHogg

I’ve started to put some things in plan. I’ve asked a local hairdresser to come in once a week, sent another email to SS, and am hoping to get mum in the day centre an additional day. Yesterday my boss called, my furlough is ending from next week so I am back to work, at least this will give me Tuesday and Thursday off. Little steps but I’m trying. I wish my dad would get on board though, he is still the biggest hurdle. He was very nasty to me yesterday. I was late coming round to sit with mum so he could go to the dentist. I apologised and said I was late because my boss had rung me to discuss my return to work, he snapped back ‘Well that’s not my problem, you should have been here earlier and you should have told your boss to FUCK OFF’! - I’m never going to change him am I?

I’d have turned on my heel, told him he has no right to talk to me like that and left immediately. Why on earth are you allowing that? It’s the dentist, not life and death. If he missed his appointment that’s his own fault. Stop tolerating it.

It sounds like a real struggle I’m sorry for you and your poor mum. I think you are going to have to get some sort of professional care in place as you are taking on way too much. It might be kinder in the long run to find a care home specialising in dementia. It doesn’t sound as if it’s a very healthy environment for your mum at home with your dad’s attitude.

@Sobloodyexhausted

It sounds like a real struggle I’m sorry for you and your poor mum. I think you are going to have to get some sort of professional care in place as you are taking on way too much. It might be kinder in the long run to find a care home specialising in dementia. It doesn’t sound as if it’s a very healthy environment for your mum at home with your dad’s attitude.

This idea is the best. If he speaks to you like that goodness knows what he's saying to your mum when you're not there. I think you should have a serious word with him and tell him if he ever speaks to you like that again you won't be supporting him again.

Honestly OP - arrange what you can re carers and cleaners, and if your dad rejects this, give him the contact details for when he changes his mind.
Then - your boss has increased your hours now furlough is over, and you aren't available. Ideally your boss has asked you to cover variable hours so you can't commit to being there when your dad wants.
He's getting you to do things because thats the easiest and cheapest option for him. Once you aren't there, he'll pay for services.

Ask your df who is going to pay your bills when you tell your boss to fuck off, because it isn’t going to be your df who doesn’t even cover costs that you incur looking after them! He’s hoarding money to give to a care home, and now is the time to suggest dm moves to one I think, it will take a while to find one you are happy with. Hopefully Covid situation will be better so visiting will be easier. If df doesn’t want to do that then you have an answer of sorts, he doesn’t want to pay someone he has you and doesn’t care that you are breaking yourself to do it. My mil moved to a lovely home, we visited loads (df could go every day) and time visiting was spent with her, rather than doing jobs. Mil was very happy, as were we

@dotdashdashdash

There is absolutely no way on this earth that I will be caring for my parents in their old age. My mother is very likely to get dementia and I have lots of experience with dementia and older adult care and I know that the day to day care is not in my skill set - I will very happily organise and pay for skilled individuals to do the physical caring, I will provide emotional support and find a lovely care home for her to live in, but I will not do the caring.

I hope my mother won't get it (she's 82 and very sharp currently).

However, the fear is that my husband will get it. Might not be until his 80s, but he's older than I am. Of course it could be the other way round, but by the time I am in my 80s he will be very late 80s/into 90s so may not be around by then.

OP's dad doesn't "have an attitude". It should not be his burden either. However, he needs to buy in help, not impose on the OP (and her sister who isn't being unreasonable at all to refuse).

You need to decide what amount and type of care and support you can provide to your parents without it impacting on your own life, wellbeing and the care and wellbeing of your own children and relationship and friendships.
In short you do NOT have to sacrifice your own life to support them.
They will have to accept carers. You are going to have to be strong and determined.

I hadn't seen the latest update about the dentist, yes he overreacted but I guess it was his first dentist appointment since the pandemic started? and I guess he feels trapped if he can't go out if someone needs to sit with his wife. My mum's cousin has the same with his wife, he goes out for a walk once a day for an hour and that's it, otherwise he has to be at home or she is distressed.

you do NOT have to sacrifice your own life to support them

and more to the point, your childrens' lives. You can martyr yourself if you want, but kids should come before parents.

I've just placed my elderly mil in a residential home and it's been the making of her. She no longer feels a burden and is receiving the round the clock care that she needs.

I'm in a slightly different situation but have some suggestions that might help. It's not unusual for one partner to want to run away from care needs whatever age it happens. I think it must be a really complex emotional response and a fear of losing what you've had for decades so the insistence that they carry on as normal is a pretty standard response.

My parents never had care, very proud, would never have entertained it and now have someone in every weekday. If there is no one at the weekend they are lonely and the days are very long for them. Aside from the practical support it gives the day a structure and the staff have very much become close to them. They have more independence now not less.

I would suggest that you try to remove yourself from the power dynamic by getting someone else to have the discussion with your dad. Now is probably not the time to address how/why their expectations of you are unreasonable, I would just keep telling him you're there to support him with the services, they're the specialists but offer to help arrange payments and so on. Absolutely agree with PP about getting listed on the bank accounts and seeking PoA, especially if you Mum has moments where she can give consent to this as once she can't you're too late.

It may be best to come from the GP or another service and presented to your dad that the services are support for his needs as s carer, that your mum has been allocated funds to get specific help for her needs that he can't be expected to give. Talk to Carers UK and Age UK, they have tones of experience with this.

How invested are they as grandparents, would they put the grandchildren's needs above their own? If you were to tell them that dgc need you at home in the next few weeks but you've heard of support locally would they be more amenable?

Age UK provide 'cleaners' (£17.50 ph in our region), we had about a 4 week wait. They can clean, do laundry, shop, iron and so on but most importantly they build a relationship with the family and can provide companionship. They have seen everything and will have a better handle on how to approach your parents than you would expect. Apparently, two hours twice per week is average. Hopefully the Attendance Allowance is for both night & day - around £376 pm? - and it is intended for exactly this kind of thing.

We also use Home Instead, a national company providing care in homes. They are really expensive £22-28 ph but only have a 4 hr per week minimum so that can be still be covered by your Mum's AA. They have a sliding scale of care from housework to companionship to personal care and advocacy (making appointments, calling services and so on).

I think as other PP have said that your mum maybe happier in a residential service for dementia patients. I hear it can be worse for patients at home as there are so many things that remind them of their failing memory and ability. There are some really wonderful homes out there.

I really had a moment where I realised I had to stop 'saving' them and start supporting them instead. I'd try not to react to your dad with anything but neutrality and to be sympathetic to him, he'll likely find it easier to accept your support/guidance then. I truly wish you all the luck.

I don’t know why I put up with the crap tbh, I think it’s because as with some others experiences I’ve been helping out slowly and surely for so long that it’s just become expected of me and it’s become the ‘normal’ for me to automatically think it’s for me to do/my place/job to do within the family.
I keep putting up with it because I suppose deep down I am anxious that if I tell some home truths or say how I feel it will put a crack within my family so deep that it will be irreparable.
I need to make plans, slowly, to step back as I know my dad and I can guarantee I will not be able to change him now, he has become too bitter and angry in his old age, he will agree to very little but sadly that’s not my poor mums fault, it’s a nightmare.

@ImaHogg, I really feel for you. What about my idea of some therapy to try and discover the roots of this helping out......which sadly is now running riot.

I can't imagine the scenario you describe a 13 year old, a 15 year old , a job and this millstone round your neck.

Personally, and I wouldn't wish it on anybody, the result of my parents' behaviour was a split in the family. It wasn't great to begin with and is now well and truly busted.

Oh OP my heart bleeds for you. It sounds like you're making steps, which is amazing. Honestly, doing anything at all in the face of this is such a massive step and you should be so proud of yourself. I've had 11 years of it and it took me at least 6 to get anywhere near to organising what you've already done. Make sure you look after yourself too.