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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:
Candleabra · 27/04/2021 17:07

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.

randomer · 27/04/2021 17:30

@Candleabra, well said.

Frankley · 27/04/2021 17:32

I see you ' collect her meds' l use Pharmacy2U. Order from GP on line and delivered by postman, usually a few days later. Has worked well for us. Don't need to go to chemist any more

HoboSexualOnslow · 27/04/2021 17:50

@FluffMagnet

I'm sorry OP. It is a wicked disease and a lot of carers end up getting snapping and irritated as there is no release from it all. My parents cared for my grandmother in their house for many years. My mum.likened it to having a toddler, but becoming gradually more helpless and time consuming. They got the the stage where my parents couldn't even go into the garden without her following them (the front of the house is very dangerous with a steep drive and GM was getting very doddery) or doing something utterly weird in the house that would often cause a hygiene issue. My DPs have admitted defeat and she is in a lovely, tiny dementia home for ladies and she is happier than ever. She was acutely aware she was a burden on my parents, but couldn't help what she was doing. If your marriage is hanging on by a thread, and both your DF and DM are deeply unhappy, you need to force their hand and get specialist help. It is a terrifying step, but if you can find the right place, your DM will live in happiness, with dementia friendly activities and friends, and your DF can visit and begin to enjoy your DM's company again.
What a lovely post.
LimeCoconut · 27/04/2021 18:11

@2bazookas

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.

Your first paragraph is absolutely spot on.

OP you’re probably used to seeing your mum as she used to be in her right mind, but sadly that has passed now. You owe it to her to get her some proper help. ❤️

cptartapp · 27/04/2021 18:12

So if they get non means tested AA to help with th activities of living, what are they spending it on?

CaptainHammer · 27/04/2021 18:17

@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.

Trust me we have not been hiding away. Sadly COVID has highlighted and exacerbated health issues so there is a lot to get through. Obviously COVID hasn’t helped with some staff having to self isolate at times due to symptoms but mainly where I am it’s just a massive backlog of new people.
DareIask · 27/04/2021 18:32

You should be getting higher rate attendance allowance and I'd spend it on a cleaner, mobile hairdresser, laundry etc. Anything to make life easier

Also make sure you have LPA etc sorted.

I've been in your shoes and it's exhausting... I really feel for you x

LindyLou2020 · 27/04/2021 18:54

@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.

I used to be a local authority social worker, although I left in the mid 90's so I am way out of touch. And I never had to operate during a pandemic....... However, being told you have to wait 3-6 months for an assessment is appalling. I'm shocked, and angry for you. If, for example, we got referrals concerning people in similar situations as your parents, and we were told the issue was urgent and the family were at breaking point, we had to act. I once answered the phone to a man who said he was going to drive his elderly MIL to our SS office and leave her with us, unless we provided some kind of help to his DW who was on the verge of a breakdown trying to cope with a situation very similar to yours. A drastic threat, but people get desperate. You may at some point have to get more pushy and demanding. People get their local councillors and MPs involved, and refuse to be fobbed off. It's sometimes what you have to do. You're possibly not at that stage, but in time you might be, and I wish you all the very best Flowers
Honeyroar · 27/04/2021 19:04

Social services actually told us to ring the police rather than them when my mil was threatening to kill herself because she thought my husband (her son) was her husband leaving her.

Fr0thandBubble · 27/04/2021 19:07

I have a good relationship with my mum OP but I wouldn't do it. And I wouldn't let my children do it either - I'll take myself off to Dignitas before I let my children make any sacrifices for me.

I think your father is being selfish, especially as they don't help you financially. Why should you help him when he doesn't help you? He's got all the time in the world and you have to work and look after your own family.

Dobbyisahouseelf · 27/04/2021 19:27

It is so hard having parents whose health is failing. My MIL has dementia and although her three children are all pitching in it is exhausting.

You must try not to over stretch yourself as to be frank you will be no use to anyone if you burn yourself out. Make time for you, your children and DH perhaps you need to re-think things, perhaps splitting your time more evenly between your own family and parents?

Definitely organise a carer, hair dresser or cleaner anything that takes the pressure off you. You also need to have an honest conversation with your DS that you can't shoulder all the responsibility.

Three years on from FIL dying my DH is exhausted as we are not local to MIL and she is demanding more and more of her children's time. Very hard when we have work, distance and our own children's needs to juggle.

kerstina · 27/04/2021 22:33

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 !

TunstallTansy · 27/04/2021 22:58

@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.

My experience is similar to @Candleabra .

It's a boiling frog thing. My sister-in-law got to the point where she couldn't go on holiday as her dad didn't want carers, she missed her own kids' teenage years.

She never made a conscious decision to do it, it just crept up on her, doing a bit more all the time.

DareIask · 27/04/2021 23:11

I hope you have more luck than me with social care. Even before the pandemic they told me they couldn't / wouldn't do anything to help me or dad, as he was self funding, even when I was sobbing down the phone to them.

I did receive a list of care homes through the post about a month later, none of which had vacancies.

Anna727b · 27/04/2021 23:20

I think you need to watch out for yours and your own household's needs. My parents moved my Gran who had dementia, into our house when I was in my teens and I had to take on caring responsibilities for her. Caring for someone in the late stages of dementia involves managing incontinence, dealing with aggressive outbursts, coping with sleepless nights and not having a second to yourself.

Your Dad will genuinely be needing help- it's not just a matter of him being difficult- coping with living with someone with dementia can be absolutely dreadful- it's unlikely he gets a minute to think.

So the best solution whether your Mum likes it or not is probably to get carers in, funded by your parents.

Anna727b · 27/04/2021 23:23

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.

RangerOnCall · 27/04/2021 23:23

I'm in/was in a very very similar position OP.

Dad Dementia (now died - leaving mum very lonely and disabled) with sibling living abroad.

I basically told my mum that I wasn't her carer I would only be coming to visit and not to cook and clean. I found one carer on Facebook community page to cover weekends and said she had to meet her at least. Week day care is pretty much covered.

I would full time and I'm disabled myself! I love my mum but I'm not spending potential the next 20 years looking after her.

Cowbells · 27/04/2021 23:30

I agree with getting outside help. Definitely a cleaner and maybe also a home help to do some shopping and laundry, changing the beds etc. They can get food delivered. And book a carer for half a day a week to look after your mum so your dad can do his own thing. If you also come over once or twice a week and your sister does too then he gets four breaks. With the house being cleaned, the laundry done and food delivered, life will get easier for him. But you and your sister need to discuss with him that a time may come when she needs to live in a care home. DFiL finally realised this and visited MiL every day until she died. he was a lot happier and more loving towards her when he wasn't having to deal with her dementia 24/7.

GrumpyHoonMain · 27/04/2021 23:36

Definitely buy in a carer if you can. You could also try changing her diet. It’s no cure but switching to a mediterrean diet seemed to help my friend’s mum improve slightly and staved off the worst of it for years. Their GP was going some research on it and recommended it.

Miasicarisatia · 27/04/2021 23:41

This is very very difficult for you OP, you shouldn't have to be coping with all this💐
I think you have to be ruthless, step away and be prepared to call social services if your father is being abusive towards your mother.
Easy for me to say...

ZednotZee · 27/04/2021 23:43

I'm an only child so my mum (widowed) will come to live with us in the next ten years, before she is seventy five.
She has physical ailments at present, I worry about her falls risk etc and I am prepared to manage any and all of these.. dementia is a whole other ball game however and I would only care for her in that instance single handedly for as long as I could keep her safe.
Its bloody hard and I hope you find a solution that suits you and than you can happily live with.

Miasicarisatia · 27/04/2021 23:48

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

Babyroobs · 28/04/2021 00:05

If your parents are on a low enough income to get council tax discount they probably don't have enough to offer you money. However if your wages are below £128 a week you could potentially claim carers allowance as it sounds like you do 35 hours of caring a week.

Muchasgracias · 28/04/2021 00:53

We are going through similar in our family. MIL has become carer for FIL who has dementia. She is resentful that her life has suddenly become that of a carer at the age of 80 and is grieving the loss of her husband as she knew him and the life they shared. She almost broke during the last lockdown after a rapid decline in FIL and little support. We have more support in place now as otherwise MIL was going to fall ill herself (we live a few hrs away and have DC at school so a visit increased covid risk). FIL insists he hates the respite home he goes to for a few hrs every other week and same for carers who come into the home, but he sadly can’t be allowed to choose. MIL would be completely broken if it was all on her.

OP, put yourself first and arrange more support. Think of the airplane analogy. Fit your own oxygen mask before helping others. You will be no good to anyone if you try and keep up this superhuman effort (altho you sound like an amazing daughter) and your own family need you too.

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