Meet the Other Phone. Flexible and made to last.

Meet the Other Phone.
Flexible and made to last.

Buy now

Please or to access all these features

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:
Saltyslug · 28/04/2021 01:07

What about delivering your mum to your sisters a couple of times a week. Once say on a Wednesday for tea with your sister and again on the Saturday. Your mum might like a change of scene and your dad could have cleaners in for a couple of hours both days so that it doesn’t upset mum.

SmokedDuck · 28/04/2021 01:08

It sounds to me like the situation is untenable. Your dad is a problem but he may not be able to step up. Though I wonder if a therapist or even talking to their GP might help him see more clearly?

But in any case, you, your sister, and dad need to make plans for the care your mum needs and will need more later.

As for whether I'd do it - yeah, i think that family has to care for each other and that includes eldercare. Your dh is being unreasonable, aged parents are part of lie just like kids. Your sister really needs to step up though, and maybe if our husband helped a bit with house stuff that might take of some of the pressure too. Realistically you may also need to hire a cleaner or other care workers.

Suzi888 · 28/04/2021 03:17

It’s very distressing, horrible disease and affects everyoneSad.
Could you give adult social services a call? I found them very helpful and very persuasive - they sent a social worker to my aunt who despite her initial refusal, eventually accepted a small package of invaluable care.
If you work part time can you claim carer allowance?
Does your mum have medication? certain types can help with the depression your mum has. I’d go back to G.P/memory clinic/psychiatrist. Has she seen all these specialists? perhaps not to due to covid, but I’d be pushing for referrals now as will take time to set up.

LimeCoconut · 28/04/2021 07:06

@Anna727b

I realise that people with no experience of dementia think of it as just a memory issue but the worse it gets, the more it is like looking after a person with extremely severe autism who has outbursts, incontinence issues and needs to be watched 24/7.
I think people have this idealised vision of sitting with dear old mum over afternoon tea and having to remind her now and then what year it is is over a chuckle.
ImaHogg · 28/04/2021 07:57

@Miasicarisatia

I think the stress of the pandemic could cause an escalation in the amount of dementia sufferers
This is definitely the case. Mum and dad have really struggled during the winter lockdown, all support just stopped virtually overnight and was only available remotely which is so difficult for the elderly many are not computer savvy or enjoy using them. The staff at the day centre which mum goes said they have seen a marked difference in their service users since they last saw them, before the lockdown, sadly with dementia that decline is irreversible.
OP posts:
ImaHogg · 28/04/2021 08:19

@kerstina

Yes I do . Mom had memory issues before my dad died 7 years ago and she has gradually got worse . I am an only child , she doesn't want strangers coming in . I do what I can but have to have time away as it can be really draining mentally as physically exhausting . Every day there is more for me to do , less she can do . I keep saying I can't do it anymore but then I see how frail she is , feel guilty and try to help. We are being assessed by social services as the disease has progressed from cognitive impairment to dementia . I get carers allowance but for what I actually do it's laughable !
I have applied for CA but like you say it’s a joke. They expect you to care for at least 35 hours a week (which I easily do) for £67 per week, I probably spend that in fuel and telephone calls alone!!
OP posts:
ImaHogg · 28/04/2021 08:24

@Candleabra

I've been through this. It won't be easy to hear, but it will only get worse. It'll be gradual, but suddenly you'll turn around and realise you're in hell. You can't hold back dementia. It is relentless. Look after yourself and your own family. Get help so you can send some time with your mum while you still get something out of it. Call social services to assess the situation - then walk away. Not forever, but from the day to day caring. There will be no outside help offered if an adult daughter is doing it all.
I’m fully aware that is our reality but seeing it in black and white makes me realise why I am so constantly anxious and depressed, my family are traveling towards the gates of hell and there is no u-turn. How can I possibly step back from that when I know that’s where my mum and dad, who have been there for me my whole life, are heading?
OP posts:
RainingBatsAndFrogs · 28/04/2021 08:48

I am so sorry you are dealing with this OP, and I know exactly what you are dealing with!

In the end you have to be cruel to be kind. You cannot and must not deal with this without help.

Your Mum should be entitled to Carers Allowance at the very least.

My sister nearly had a breakdown trying to manage my parents, and had to be very direct and explicit with Adult Services: she could not and would not take on care any more.

You need to support your GCSE aged child, and any pressure adding to anxiety and depression will not help.

Your parents are clinging to what they know.

We had to have some blunt and clear conversations with our parents but now they are used to carers coming in and it works well.

It’s like getting into cold water to swim, you have to grit your teeth, the first moments are uncomfortable, but then it is fine.

Please look after yourself OP.

RainingBatsAndFrogs · 28/04/2021 08:49

P.S look at the AgeUK website to check what they should be entitled to - it is very informative.

Attendance Allowance is money to spend on any support. You being identified as a paid Carer could be a real trap.

Candleabra · 28/04/2021 08:57

How can I possibly step back from that when I know that’s where my mum and dad, who have been there for me my whole life, are heading?

I'm so sorry. It's an awful situation and very frightening. This was my life for 5 years. And yes, serious anxiety etc.

Dementia is progressive. Every time you solve a problem, another appears. I understand the anger, at the situation, at your mum, and fear of the future.
You, as a family, have to travel down this road, the only thing you have control of is your actions.

The mistake we made was trying to do everything. Mum wouldn't admit she had dementia, lost capacity quickly, and went from ok-ish to difficult and incontinent in a very short time.

You can help your parents to get support, but the agencies need to look at the big picture. You stepping in constantly to fix each issue as it arises just entangles you further into the web.
Social services look at needs, not wants. Focus on your mum's needs, not your families wants. No-one wants this - it's the illness that causes all your mum's problems - but you need the help.
Let the professionals come up with solutions. It isn't black and white - live at home with no help vs 24 hour care home. Where you can help most right now is being really pushy and clear with the agencies about the facts of the situation. Lay it out in a report, look at every aspect of your mum's day to day life. You'll be amazed how much everyone is doing already, covering up the problem.
Get the help, so you can spend some time with your mum without feeling angry, tearful and constantly on edge. I do have the utmost sympathy for you. And no-one who hasn't walked in these shoes gets it.

poppycat10 · 28/04/2021 08:58

I think the stress of the pandemic could cause an escalation in the amount of dementia sufferers

I totally agree - telling the elderly to stay at home and acting like covid was floating around outside their houses was a nonsense. Fortunately my mum saw it as nonsense and has been out every day, but she says she has friends who have declined. One friend in particular was in the early stages of dementia but it has got much worse over the past year.

The elderly were made to be terrified, and dementia or serious mental health problems will be the result. Isolation is a definite risk factor for dementia.

Not that this helps the OP.

cptartapp · 28/04/2021 13:34

You don't have to be heading for the gates of hell, but you'll continue to do so because it seems your parents are willing to let you be constantly anxious and depressed because they won't have carers. Again, what are they spending their AA on? Don't they pay you back for the fuel?
They've been there for you your whole life because that's what you sign up for as a parent. It doesn't mean as an adult with a family of your own you're beholden to them in any way at all. Certainly not to the detriment of your own children.
You absolutely must start to step away, hard as it is. What your parents need now outweighs what they want. And their well being doesn't trump yours.

Quincie · 28/04/2021 13:55

DFIL is 80 and somehow they have never had a discussion about what happens when we can't manage/ someone gets dementia or similar/ should we downsize / can we afford a nice care home if we need them.

It is really ridiculous - nowadays with good health care people can live for decades with debilitating health or dementia and no one makes a single decision about what will happen when something inevitably occurs!

Rant over.

ImaHogg · 28/04/2021 14:43

@cptartapp

You don't have to be heading for the gates of hell, but you'll continue to do so because it seems your parents are willing to let you be constantly anxious and depressed because they won't have carers. Again, what are they spending their AA on? Don't they pay you back for the fuel? They've been there for you your whole life because that's what you sign up for as a parent. It doesn't mean as an adult with a family of your own you're beholden to them in any way at all. Certainly not to the detriment of your own children. You absolutely must start to step away, hard as it is. What your parents need now outweighs what they want. And their well being doesn't trump yours.
They do nothing with the AA. They didn’t even know it existed before so when I got it for mum they were grateful and said they would give me some of it for all the help I do for them. That never happened and then dad told me he’d thought about it and wasn’t going to give it to me as it wanted to save it for when they get a carer in...a) that has never happened and b) they have £250k sitting in their bloody bank account ffs! And I get offered fuel money occasionally, just occasionally unless I ask for it and I hate having to ask for money.
OP posts:
SwimBaby · 28/04/2021 14:55

What would happen if you said you could only go
Once a week? Do you think they’d let you arrange a housekeeper/cleaner?

ImaHogg · 28/04/2021 16:43

@SwimBaby

What would happen if you said you could only go Once a week? Do you think they’d let you arrange a housekeeper/cleaner?
Dad would ring or FaceTime me constantly. Even on the days I work (currently furloughed) dad will ring me all the time!
OP posts:
SwimBaby · 28/04/2021 16:55

What an awful situation you are in. I think if it was me I’d be really firm and say I was only visiting once a week to help with XYZ and that you’re happy to arrange help which they will pay for on other days.
I became totally overwhelmed looking after my DM last year who has Alzheimer’s and I wish I hadn’t got sucked in. I was so busy looking after her, I didn’t realise how ill my dying DF was. My parents are divorced and my DF died just before Christmas.
You need clear boundaries or it will take over your life and could cause niggles in your marriage. Honestly your priority is yourself, your DC and your DH.

Miasicarisatia · 28/04/2021 17:47

Dad would ring or FaceTime me constantly
dont answer the phone, be unavailable, be flaky & useless, (pretend to) join a religious cult etc
you are a free adult, you dont have to be at the service of these people

zingally · 28/04/2021 17:51

Speaking as someone who has been in a similar circumstance... You do what you need to do, in order to sleep peacefully at night.

To sum up a long story, my dad had a significant mental breakdown. As a family, we didn't want him hospitalised. Mum struggled to cope however, and I gave up 6 months of my life to be there as much as I humanly could. Even though they lived 2 hours drive away.

My older sister, who lives 45 minutes closer, did jack-shit. Literally.

I complained heartedly about it to friends, and eventually came to the conclusion that I can only manage myself. I would, and always will, do what is needed, so that I can sleep, guilt-free, at night.

My sister? Well, she's just never going to change. I love her, but she's a hopeless sack of waste of space.

springnamechange · 28/04/2021 18:14

They have money in the bank, now is the time to use it to buy in care. I've spent several decades looking after my mum and disabled sibling at the expense of my own family and happiness. Not had a holiday for years as mum didn't like me going away, run ragged looking after them week after week, year after year. I always thought mum wouldn't last much longer, but despite dementia and being in her nineties she still goes on. Don't do what I did. Take control of your own life now.

Lollypop4 · 28/04/2021 18:24

As a private carer, I really think your 1st change should be to help' you 'a bit more!
Get your parents a cleaner, despite protests from your parents- This will rwally help all of you and they will soon realise this.

Your sister needs to pull her weight.
If she does'nt , you will have to look at extra care.
I don't do so much personal care, Im more a companion carer.
I support my service users out in the community by attending anything from their clubs, hobbies, shopping , walking, or simply to the local cafe.
At home I assist with meal prep, maybe jigsaws, some gardening or simply enjoying sitting with the service user and watch their tv show.
There are many companion carers out there and I feel it assists with the family too to give a break.
I wish your family well.

ImaginaryCat · 28/04/2021 18:25

Fuck that shit. I'm sorry OP but your parents have £250k sitting in the bank and aren't even offering you any financial recompense for all your assistance, despite things being tight for you. No, just no. Step back right now. They have to start putting their hands in their pockets for paid support. What the fuck else is he saving that money for? If he dares tell you it's your inheritance, while his demands right now are breaking you physically and mentally, tell him he's a short sighted twat.

SwimBaby · 28/04/2021 18:41

I don’t think the sister needs to do more.

springnamechange · 28/04/2021 18:54

Agree. The sister doesn't need to do more

SwimBaby · 28/04/2021 18:58

The more the OP and the sister do the less chance of the parents paying for care, cleaners etc.