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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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

267 replies

ImaHogg · 27/04/2021 09:29

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?

OP posts:
Lillygolightly · 27/04/2021 14:36

Oh and as for the day centre have you asked them about transport? Our day centre had a bus that picked up all the attendees in the morning and dropped them off in the afternoon. That meant that all I had to do was make sure MIL was ready in the morning. There is a cost but it’s not expensive. The transport company send the same transport driver and assistant so they were familiar, and they were brilliant and getting MIL jollied up about leaving the house.

Same with the carer, use a private company if you can as this means that you get the same person each time, they will also change the person if a particular person doesn’t suit your mum. Also you can introduce them as a friend, someone to chat to to start with and then slowly factor the care needs in as a relationship builds up. This is what we did with my MIL and though she disliked it at the start she did come to accept it. Sadly towards the end MIL wouldn’t let anybody near her accept me, but it really helped having the carer for the two mornings a week and took pressure off. We also had our carer come on day centre mornings and help get MIL ready to go out. This meant that two mornings a week I was able to just concentrate on my kids and getting them to school.

Sbfksh374 · 27/04/2021 14:45

I already worry about this and my parents are not there yet. I am an only child so everything will be on me.
My dad is early 70s now and has quite a lot of money. He has said in jokey comments quite a few times recently that if I don't look after them, or maybe even let them live with me, then I won't get my inheritance. He says it in a jokey way but he means it.
My mum has always done absolutely everything in the home. If my dad was alone or had to care for my mum, absolutely nothing would get done in the house. And he is very mean with money. He would never, ever allow me to organise cleaners or carers unless I paid for it!
I am absolutely dreading all this to be honest. I don't know how I'm going to cope with it. Good luck to you and I have no advice I'm afraid.

SwimBaby · 27/04/2021 15:19

Your first priority is to look after yourself and your DC. Last year I was in a similar situation caring for my DM who has advanced Alzheimer’s. It got to the stage when I was close to a break down (due to the caring and two other big family things that happened around the same time). The carers support organisation arranged counselling for me and my doctor told me to prioritise myself and my DC. Through the counselling I've learnt not to cut the strings but to loosen them a lot.

randomer · 27/04/2021 15:21

@Chaner, not keen on a carer? Is she keen for you to give over your life to her then?

Sorry, I have wasted many years involving myself in this dilema.

SwimBaby · 27/04/2021 15:37

I couldn’t see if you mentioned if your DM claims attendance allowance, if she does you clan claim carers allowance if you earn under approx £120 per week.
Like others have said getting POA is vital at this stage, it took two years with my DM to ‘talk her into it’ but thankfully we got it. If your DF refuses you must tell him you’re stopping care. It’s that important.
Second if you have a social services assessment mention any fall either parent has had recently and they will prioritise you.
You may have a dementia crisis unit in your area, if so you could contact them explaining the situation. They were absolutely brilliant with helping my DM and indeed my whole family.
If you do get a care package, don’t expect plain sailing, we had nearly a year with carers but then my DM attacked a carer and now we’re back to doing everything but at least we had a bit of respite.

cptartapp · 27/04/2021 15:39

My DM ended up on antidepressants and BP medication running round after my GM. My GM died aged 89 and then my lovely DM was killed six month six later in a car accident.
We 'scrimp and save all our lives ' to buy in care when needed as we age and ensure our safety and well being. Or we absolutely should. No parent worth their salt would allow their GC with jobs and DC of their own to do their bidding indefinitely surely? I would have thought very differently of mine letting me do that. Not what I would want my DC to do with their lives.

My DM would have given up every penny of her inheritance she didn't live to enjoy, not to have had the last stressful years she did.

Think long term and get outside help in asap. Make choices that benefit you and your family and mental health, as today is the best she will ever be. And you do have a choice.

ElMacchiato · 27/04/2021 15:45

Definitely get cleaners / gardeners in. Can your mum have a Mobile hairdresser round once a week to do her hair (wash it and blow dry)?
Does your mum get attendance allowance? That can be used to pay for the above.
Also your parents can get money off their council tax as your mum has dementia.

GooseberryJam · 27/04/2021 15:48

@Sbfksh374

I already worry about this and my parents are not there yet. I am an only child so everything will be on me. My dad is early 70s now and has quite a lot of money. He has said in jokey comments quite a few times recently that if I don't look after them, or maybe even let them live with me, then I won't get my inheritance. He says it in a jokey way but he means it. My mum has always done absolutely everything in the home. If my dad was alone or had to care for my mum, absolutely nothing would get done in the house. And he is very mean with money. He would never, ever allow me to organise cleaners or carers unless I paid for it! I am absolutely dreading all this to be honest. I don't know how I'm going to cope with it. Good luck to you and I have no advice I'm afraid.
@Sbfksh374 next time he makes that joke, say 'that's fine, you can use that money to pay for everything you'd ask me to do and my conscience will be clear!' You do not have to take over care or have parents move in with you. There has to be a line that allows you to maintain your own life and mental health. Can you talk to your mum separately though? Does she manage to stand up to your dad at all so she could get him to pay for help with the housework?
EmeraldShamrock · 27/04/2021 15:53

It's tough when they're so dependent some financial help would definitely make a difference, your Dad is a very entitled man he sounds like he has it together if I was you I'd be direct.

Remember some time for you too. Flowers

EmeraldShamrock · 27/04/2021 15:56

@cptartapp I'm so sorry. Flowers
That's one of the main reasons it is important to look after your needs over others at times.

Kangaroobill · 27/04/2021 16:07

Sorry you’re in this situation, I’m currently supporting a friend who is going through the same thing. Personally I think you should maybe support with hair washing or finding a homehairdresser who might make it feel like a treat for your Mum. The cleaning and washing your Dad should be doing if he is capable, of not he gets a cleaner. End of. They can’t pressure you into doing this, your children are your priority. Are you able to support by taking your Mum out or having her at your house so he can get on with it?

It annoys me so much that services are using Covid as an excuse @saraclara, I’m a HV and have been doing home visits throughout Covid. March-July it was just new birth visits in the home but since then every single contact has been face to face in the home and clinics are running. It varies too much between areas and we’re getting even worse a name for it. There is no excuse for anyone who is not shielding or cev in a professional role where home visits have been needed to have not done them since PPE was widely available. It’s causing so many problems and backlog.

ImaHogg · 27/04/2021 16:10

Thank you everyone for your advice and input, I have taken it all onboard. I will chase up SS again tomorrow but honestly don’t think I’ll get far with them.
I can’t believe so many of us are in similar positions, I suppose that is one of an aged society. A Flowers to you all, it’s so bloody tough.
Btw, I do have full POW, mum has AA and I have just last week I applied for CA, I may as well try to get paid for the time and effort I put in even if dad won’t physically pay me himself!

OP posts:
LimeCoconut · 27/04/2021 16:20

Unfortunately they’re able to refuse professional care BECAUSE you’re doing it all. The more you do the more you enable them putting everything onto you. They don’t actually have the ability to make you run yourself ragged to care for them. If they were childless or child free they’d have no choice, or things would deteriorate to such a point social services would step in (eventually).

I understand you’re also putting a lot of the frustration onto your sister because you’re frazzled but she has the correct approach here: she does what she can and is comfortable doing and then stands her ground and doesn’t offer more. That’s how it should be.

It’s hard because you love them but I would consider taking a large step back for the foreseeable, and let them know if they realise they can’t cope on their own they can tell you and you’ll help them organise professional care. But you’ll never get to that stage without stepping back.

You can’t sink your own life to keep someone else afloat. Trust me. It’s not worth it. You’re a person too.

Megan2018 · 27/04/2021 16:26

I wouldn’t no. I’m not local though and I have a busy job. My parents have the finances to provide good private care so I’d expect them to outsource as needed.
I can imagine it is very difficult to step back though once you have started and I’m sorry you are going through this.

I think it helps in my family that my parents moved away from theirs and didn’t provide any care themselves, so it’s not an expectation IYSWIM.

kiwiPlumapple · 27/04/2021 16:28

No I wouldn’t do it. I couldn’t do it.

I’m closer distance to both df and dm (they are separated) I have 2 siblings I’ve told them both it’s nothing to do with me

LimeCoconut · 27/04/2021 16:31

@saraclara

I have arranged for a care assessment via local SS but have been told that due to Covid there is a long delay and they won’t come out for at least 3-6 months! Alzheimer’s U.K. haven’t been much help either, again due to Covid, all support is online but parents aren’t computer savvy or interested.

This sorry of thing is driving me mad. Why are health visitors, social workers, GPs and other social and health care professionals still hiding away? Why can't they come and stand in a garden to assess someone, or at least talk to your dad? Virtually everyone what in public facing roles is back doing their thing. Yet those who should be dealing with the most vulnerable and at risk, are not coming out for another 3-6 months? FFS.

It’ll be backlog. These teams are so busy they’re on their knees. They’re trying to catch up after having been unable to go out to assess people for several months last year. They often have to go into someone’s house to properly assess them, a garden chat doesn’t quite cut it. They’re not ‘hiding away’, they’re trying to make it through a backlog having refrained from seeing people during the height of the pandemic.

Our local memory care service did continue seeing people and are now being investigated after a higher percentage of their patients died compared to the previous year, the suggestion being that their visits spread covid which ended up killing a lot of elderly people they work with.

LimeCoconut · 27/04/2021 16:35

She told me last week that she wants to die so I can get on with my life, she feels like she is such a burden and is of no use to anyone.

You can build on this. You can say to her you agree that neither of you want caring for her to become a burden, so let’s get some support in place so you can go back to enjoying each other’s company as mother and daughter rather than carer and patient. Build her self esteem up and remind her that she’s your mum and you will always need her guidance, love and advice in your life and how nice it’ll be to have the time to do things together rather than you be so busy doing practical care.

ihavethehighground · 27/04/2021 16:35

My PIL refused to have help in the form of carers and cleaner. MIL wanted me to do it and I wouldn't because I already had my hands full with a my son with ADHD and my own elderly father. MIL was constantly complaining but would not agree to pay for some help.

You have to think of your own immediate family or you could end up very worn down

ICouldHaveCheckedFirst · 27/04/2021 16:43

The old MN adage applies here: you can't pour from an empty jug.

Look after yourself first, then your DCs & DH.

Lovethewater · 27/04/2021 16:48

Have been in a similar situation - my mum was diagnosed with vascular dementia and my dad was getting increasingly frail, however they were reluctant to have 'strangers' into help. My sister and I both worked full time, had families and were meeting ourselves coming back. I would definitely agree with the advice to get some support in as soon as you can. We started with the cleaning and found someone local who hit it off with my parents and my mum in particular looked forward to her coming. She was happy to do extra tasks, making lunch etc as their needs increased and in hindsight we should have done it sooner. It was money well spent and an absolute godsend when my dad died suddenly. If she had not already been involved I think my mum may well have gone into emergency residential care at that point. We did need to increase the level of care provided for mum to include daily personal care but the fact she already had a positive relationship with the first person made it so much easier to introduce additional carers. My sister and I still offered a lot of support with medical appointments, hospital admissions, shopping and bills etc but were also able to spend time just visiting rather than having to rush around doing the cleaning washing etc. There were a few bumps along the way when her health took a dive but she was able to stay at home until she passed away. Sadly you may need to take a bit of a step back if your dad won't accept any outside help

thefallthroughtheair · 27/04/2021 16:48

It is such an impossible situation to be in. I hear what you say about any form of 'care' but try to find a way to make it happen. It is very common for elderly people to refuse help (from outside the family) but putting things in place before a crisis occurs which means help has to be put in place is vital. I tried everything with my DM but only managed to get 'agreement' when she was already in such a bad way that she ended up needing full time care. It was horrific. Try everything to persuade them. Look at carer agencies and try to get even just a couple of hours a week in place. Then when there is deterioration, you already have help you can turn to. It took me over 6 years of asking/begging/pointing out the advantages/getting angry/getting sad before I succeeded with my DM so I do understand that it probably feels impossible, but it will get to the stage where it has to happen and it is best to do it before that stage arrives. Very best of luck.

randomer · 27/04/2021 16:51

@Sbfksh374, that joke is totally unfunny. He sounds very unpleasant and self obsessed.

Please do not spend years and years of your life worrying about this and being teased about it.
It won't end well.

randomer · 27/04/2021 16:53

Sorry re care, I think there is a window of opportunity for this to be considered.
Once that window has gone, the emotional manipulation, guilt tripping and game playing kicks in. Its selfish.

Mary46 · 27/04/2021 16:55

We couldnt do it long term. Our dad needed 24 hr care. Falls in night etc. Had our own families too. I know people say oh its your parent. Depends on lots factors. Op feel for you very tough. Nobody could do rotas long term as had young kids.

2bazookas · 27/04/2021 16:55

It's no good waiting for your mother to recognise/admit the need for outside help; because her condition is already way past rational decisionmaking. She is the person least able to manage this situation or find ways to cope. You need to contact their GP and Social Services and ask for a care plan assessment asap.

I know you feel at breaking point, but bear in mind your Dad must feel the same ( he may be going very short of sleep; and he may be hiding from you the worst of what dementia is doing to her).
Everyone knew my friends husband had dementia but they were a proud and independent couple keeping up a front, and even their own daughter, who lived nearby and saw them often, was unaware of what her parents were hiding. That thanks to dementia; he was prowling around all night every night at risk of doing potentially dangerous things so his wife had to stay awake lock the doors and hide the keys; that he was incontinent; and that when he found the doors locked , or his wife tried to soothe or distract him or clean him up, in frustration he would unpredictably lash out and hurt her.