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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:
PurpleMustang · 29/04/2021 16:22

I am so sorry that your dad for whatever reason is being such hardwork. Your sister has put some boundaries in and you need to aswell. Your husband can see what has happened and will happen from a mile off and is trying to help you by saying take a step back. Your kids need you too, your mum and dad could be alive for many many years yet. Your kids will quickly grow up and they will just remember you forever being over there helping. Is your dad being stubborn about the laundry etc as it was her job and if she can't someone else, ie you will have too? Or if she was say in a care home would he do it himself or still expect. (Then you would be split helping even more, by visiting her and helping him). If he has the money then you need to put your foot down. I would tell your mum you want the help in so that when you visit you can spend the time with her, take her out not be doing housework he is too lazy to do and can afford for someone else to do. Spend quality time with her. Its fine for him to be selfish, and I think it is, to say he doesn't want the helpers in, but its ok for you to also say you don't have the time to do it, then its back to being his problem.

Puzzledandpissedoff · 29/04/2021 17:18

My furlough is ending from next week so I am back to work, at least this will give me Tuesday and Thursday off

That's actually pretty handy, especially as your DPs don't need to know which days you're off. As far as they know you could be needed at work every day, so why not tell them you'll only be available, say after 5pm except in the direst emergency - and then if they abuse it switch your phone to voicemail?

As for your DF's abuse I'm afraid I wouldn't be putting up with that at all, but if you choose to do so there's not much more to be said on the subject

Miasicarisatia · 29/04/2021 17:51

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
surely the crack is already there if you are being put upon so much, you are functioning as a bit of wallpaper which allows others to pretend there is no crack
of course I get what you are saying, if you make a stand you will cop for all the flack!
I hope you can gradually disengage, maybe have (ie invent/exaggerate) your own health issues which gradually take over and mean you have no free time?

1980tastic · 29/04/2021 20:03

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

Well if your kids are anything like me and my siblings, the cracks are already there in your own family.. your DH and DC.

I barely have a relationship with my mum because we were never the priority. When one grandparent got ill, that was the physical priority, then as mental health issues cropped up (mental deterioration) on top, complex medical needs and appointments.. well, she was never there for us for years. My sibling is the same. It was like we knew we were not as important, we literally weren't.

Just because you don't see the cracks they're not necessarily not there already.

Saz12 · 29/04/2021 21:52

Your Dad is lashing out at you because he’s terrified. He’s trapped with your Mum, he doesn’t have the skills to help her, he will notice his own decline and wonder what comes next, he desperately wants to escape the situation, and he can’t face any of it. He may well have significant cognitive decline himself.

But .... you can’t cure dementia and you can’t take 60 years off his age.

And none of it is your fault.

This is not something you can “fix”. You will end up destroying your own family if you go down that road.
What you can do is get external, paid-for help in (as in, organise them). Lodge the PoA with the bank or set up online banking so you can pay cleaners and carers and garden maintenance and window cleaners and property maintenance and day respite and taxi contracts and pharmacy deliveries and online shop and the seventy billion other things you’re currently doing.

Speak to your sister. Tell her you can’t cope. Tell her how your Dad is. Tell her you’re going to visit twice a week only.

Candleabra · 30/04/2021 08:32

And none of it is your fault.
This is not something you can “fix”. You will end up destroying your own family if you go down that road.
.
This is a key point. I almost destroyed myself thinking I was somehow responsible for managing the situation and making it better. You can't. And due to the progression of the disease, just when you fix one problem, another appears.
I have an extreme anxious reaction to the phone ringing even now - it must be a learned response to the time when every call was a summons to sort out something or mum had done something awful again.

GETTINGLIKEMYMOTHER · 30/04/2021 08:46

Huge sympathies @Candleabra re phone call anxiety.

My normally robust and jolly brother was nearly driven to a breakdown by my mother’s (with dementia) endless phone calls - by which I mean quite often 30 times in one hour. Of course she simply couldn’t remember that she’d only just spoken to him.

For this reason we said a definite no thanks to a phone in her room, when she finally moved to a care home (landlines still offered then). For the first couple of weeks she would often ask staff to ‘ring my son’ but they’d limit it to once a day and otherwise tell her there was no reply.

But after the first couple of weeks, mercifully she forgot about it.

MissLucyEyelesbarrow · 30/04/2021 09:17

@Saz12

Your Dad is lashing out at you because he’s terrified. He’s trapped with your Mum, he doesn’t have the skills to help her, he will notice his own decline and wonder what comes next, he desperately wants to escape the situation, and he can’t face any of it. He may well have significant cognitive decline himself.

But .... you can’t cure dementia and you can’t take 60 years off his age.

And none of it is your fault.

This is not something you can “fix”. You will end up destroying your own family if you go down that road.
What you can do is get external, paid-for help in (as in, organise them). Lodge the PoA with the bank or set up online banking so you can pay cleaners and carers and garden maintenance and window cleaners and property maintenance and day respite and taxi contracts and pharmacy deliveries and online shop and the seventy billion other things you’re currently doing.

Speak to your sister. Tell her you can’t cope. Tell her how your Dad is. Tell her you’re going to visit twice a week only.

Agree with all of this but it shouldn't put the OP off being firm with him. If he wants any help from her he needs to treat her with respect and co-operate.
MissLucyEyelesbarrow · 30/04/2021 09:21

@Candleabra

**And none of it is your fault. This is not something you can “fix”. You will end up destroying your own family if you go down that road.**. This is a key point. I almost destroyed myself thinking I was somehow responsible for managing the situation and making it better. You can't. And due to the progression of the disease, just when you fix one problem, another appears. I have an extreme anxious reaction to the phone ringing even now - it must be a learned response to the time when every call was a summons to sort out something or mum had done something awful again.
I am the same about phone calls because it triggers all the awful memories of being my DF's carer (DF was lovely but there were repeated crises). Texts just saying 'Could you call?' also trigger the flashbacks.
randomer · 30/04/2021 09:21

We can all play amateur psychologist re Dad. Maybe his nasty behaviour is fear based ,but thats irrelevant really.

Its unacceptable, rude and needs to either stop or be managed.

kerstina · 04/05/2021 11:48

How's things OP ?

abstractprojection · 04/05/2021 19:38

So sorry you’re going through this OP

I think you have to state your terms and conditions for continuing care or be prepared to go on strike and let the dice lay where they fall

And I would not consider you to be ‘grabby’ to include payment. ‘Women’s work’ as your dad probably thinks of it is work.

user1471538283 · 04/05/2021 21:27

My DGM accepted carers and Wiltshire Food when she started with dementia but refused to go into a care home and became quite demanding. Ideally I think she wanted me to move in.

Eventually she had to go into a care home and we visited every day between us. I dont think she was particularly happy but she wasnt unhappy. At least she was safe.

You can only do what you can do. They will have to accept help

ImaHogg · 05/05/2021 09:28

Kerstina thank you for asking. I haven’t gone in every single day as I normally do. I have tried to step back a little so a couple of times dad has taken mum to the doctors as she has a leg ulcer and needs it dressed twice a week. But I feel physically sick with worry that I am not going in every day, it’s tough. I’m taking mum to the day centre this afternoon and dad will collect her later. Small steps I suppose but it feels weird like I am abandoning them!

OP posts:
ImaHogg · 05/05/2021 09:32

Oh and I’ve also booked dad and my dsis on a local dementia support group’s, dementia awareness zoom meeting. I attended it a month ago and found it very informative and supportive. I am hoping dad will get some understanding and insight into how a dementia brain acts and hopefully he will see how mums brain is now working?

OP posts:
Candleabra · 05/05/2021 09:40

@ImaHogg

Kerstina thank you for asking. I haven’t gone in every single day as I normally do. I have tried to step back a little so a couple of times dad has taken mum to the doctors as she has a leg ulcer and needs it dressed twice a week. But I feel physically sick with worry that I am not going in every day, it’s tough. I’m taking mum to the day centre this afternoon and dad will collect her later. Small steps I suppose but it feels weird like I am abandoning them!
That feeling is anxiety. I know it isn't a fix all, but you may find counselling helpful to reset your boundaries. You've become so entrenched in the situation that you've lost track of what's normal. I'm glad to hear you've stepped back a bit, but the problem with dementia is that there's always something going wrong so be careful not to get sucked back in.
UpTheJunktion · 05/05/2021 09:57

It's very tough, and a situation that affects so many 'sandwich generation' women.

I urge everyone dealing with this, or who might find themselves dealing with this, to sign the Alzheimer's Society petition:
action.alzheimers.org.uk/page/80202/petition/1?locale=en-GB

ImaHogg · 05/05/2021 09:58

Candleabra you are right, I have lost sight of what is normal and it has messed up my thought processes. I do think I need counselling.

OP posts:
Candleabra · 05/05/2021 10:01

It's so hard. I recognise all your feelings so well and have myself been entrenched in a similar situation. I remember feeling so grateful that I had some time to go to the supermarket on my own for once and my friend just looked at me like wtf?!! It happens gradually so you don't realise it.

ImaHogg · 05/05/2021 10:04

Absolutely UpTheJunktion, I signed it last week, too many are suffering and there will be more to come, dementia is the second biggest killer in the U.K, it’s a major social problem and the government need to step up.

OP posts:
ImaHogg · 05/05/2021 10:13

Candleabra that’s exactly where I am right now and the guilt is overwhelming. If I have a spare moment to myself I feel that I should be popping in on them!

OP posts:
BetterCare · 05/05/2021 10:16

This is so hard. I care full time for my Dad who has Dementia and I understand how trapped your Dad feels and I get very frustrated with my sibling because they don't do even 1% of their fair share to help.

Unfortunately, it is a part of being an adult that no one tells you about. As uncomfortable as it is, you need to sit down with everyone and have a discussion because it has to be fair and it is not going to get any easier.

You need to get a carer for your Mum but they can be introduced in many different ways. I understand what you are saying, about your Mum being too aware to have a carer. My Dad is at the same stage.

But if you find the right carer they will act as a companion. Instead of getting a cleaner maybe get someone who will clean with your Mum. Someone will wash her hair, take her shopping, help her to prepare meals. What I have found with Dementia because my Mum had it too. They still like to do things and feel like they are useful, it is just their brain that makes it too confusing for them.

Also, do your research around diet and supplements (do not get your advice from GPs and nurses). Despite what you may be advised this can make a huge difference.

I am with it is hard but you can not take it all on your shoulders.

ImaHogg · 05/05/2021 10:29

Thank you BetterCare my friends sil is a carer so I may see if I can get her onboard to maybe pop in on mum to start and see she can help, it’s very difficult to hand these things over to someone else when you’ve don’t it for so long and it feels like it should be my job to do! I will look into the diet and supplements thing but it’s tricky because all mum wants to eat these days is sweet, cakes things she says she has no appetite for anything else.

OP posts:
CarrotVan · 05/05/2021 10:43

Firstly whatever you choose to do doesn't require your sibling to match it. It's a choice and they are entitled to make a different one. It's not about "doing their fair share" or what you think is their fair share. Lose this thinking or lose your sibling relationship

Secondly, your Dad's behaviour is appalling and he needs to be told that bluntly.

Thirdly, your Mum may not have capacity to make the decisions about carers etc. This needs to be assessed by her GP or Social Services. If she hasn't got capacity and no-one has an LPA then someone needs to apply for Deputyship for her health, welfare and financial affairs.

Fourthly, stop sacrificing your life. This could be the next 10 years or more so find your line and stick to it. It's not easy but it's essential for your health and wellbeing

Signed - a 30 year veteran of caring responsibilities including physical disability, cognitive impairment, dementia and bloody mindedness

steff13 · 05/05/2021 10:49

@angela99999

Sounds as though there is no future in their relationship, your DF resents having to give DM the attention. Personally I don't see that carers are the solution, your DM should be removed from the situation if they can afford it. No reason why OP should bear all the load, teenagers are her responsibility, not DP. DM might well be happier living in a care home - I'm aware I may be criticized for this post.
This was my thought too. It may be time to look at assisted living for your mother.