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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:
ImaHogg · 27/04/2021 11:22

@Honeyroar

We went through this with my mil. It’s very hard. We had a social service assessment that was hopeless. What did help was getting a local care agency round for an assessment. They were obviously much more used to dementia patients than us abs managed to get her to agree to having some help for a couple of hours a day. The way they phrased it was so she’d have more time and be able to stay in her house longer. The carers were lovely and she quickly relaxed into their care, after having fought us for months.

If it helps, a dementia patient is not being selfish or ungrateful- in their head they really are managing and don’t need help. Also I can sympathise with her husband- it must be so tough living with someone who has dementia.

And it’s very hard walking away from your parent who needs help. I’m currently doing all the cooking, cleaning, washing, shopping and personal care for my mum. I think I need to get carers in soon too, but you just feel like you should be able to cope, don’t you!

I need to do this, I don’t think ss are going to be much help tbh, I’ve been trying to get them to come out to a vulnerable neighbour since last summer! I will need to look into a private care company like you have. It is so very tough isn’t it? I honestly feel like a failure for not being able to help them more, silly I know but it’s honestly how I feel.
OP posts:
user1485813778 · 27/04/2021 11:24

Very difficult situation - I’ve been there...there are no ideal or guilt-free avenues, but a couple of things from me - don’t wreck your own life and neglect your family - it’s really tough but you need to prioritise. Do what you can and be there for emergencies - and try to get appropriate care (sadly I found it totally lacking even before the COVID crisis - ASC, SS and charities all offered absolutely no real practical support or advice even at times of desperate need - all we got was a giant clock with the day of the week on!!!). Go for the least-bad option; that might not be what your parents want, but it will keep them safe and with a level of personal and medical care that is acceptable. Secondly - don’t blame your sister for doing less than you - you do what you want - it’s your choice, she is making her own choice. I know so many siblings who fall out over this and it’s just not worth it - one sibling doesn’t have the right to dictate what the other sibling does or doesn’t do, regardless of commitments etc. With my parents we played to individual strengths rather than extracting equal time commitments - and actually over time tag-teamed on the heavy lifting, but at the start I made a very clear decision that I would not get into a blame game or playing the martyr. It may be a long haul, so don’t burn out too soon.

BrumBoo · 27/04/2021 11:26

@ImaHogg

Its an awful situation, but getting angry with others doesn't help (as you see it your dad with your mum). Some people just don't have it in them to be carers, even for theirs parents. That doesn't make your sister a bad person. You can't martyr yourself to make up for what she won't or can't do.

What you do need to do is start getting external care sorted now. If you carry on this way, social care won't want to know, as by the time it's very bad they will just expect you to either do the full care that you've been showing to do for years, or tell you to pay out of your own pocket. You could be looking at selling your parents home and having to then take care of your dad to pay for all of this. Social Services do not sort anything unless you are very very firm in how little you/sister/dad can do from now on. It also puts a paper trail in place if/when your dad may need care. Stop thinking how to balance out the care fairly and start thinking what options are available to care for your mum that won't destroy family relationships and kill your mental health.

stopringingme · 27/04/2021 11:26

I found with Mum forgetting things - I made her a scrapbook with things in and Family pictures.

She also got very distressed thinking someone had taken her Babies - (we were all in our 40's and 50's ) so I got her a doll, she instantly calmed down.

ZombeaArthur · 27/04/2021 11:30

We had a similar situation in our family, elderly relative was becoming increasingly dependent on family help. Her children begged her to accept carers or consider sheltered accommodation, but she refused saying she didn’t need help, then went on to list all of the things her (working full-time) children needed to do for her. They ended up having quite a frank conversation where they outlined what they were able to do, but making it very clear that they simply didn’t have the capacity to provide a rapidly increasing level of care while working and spending time with their own children/grandchildren. Eventually she agreed to move into sheltered accommodation and she has more independence now than she’s had in years.

It wasn’t that her family didn’t want to help, but they simply couldn’t find the time to provide the care she needed while taking care of their own responsibilities and having some kind of life for themselves.

stayathomer · 27/04/2021 11:33

I don't think I'd ever have 'gotten' what your dad was like until I saw my dad at his 'worst'(he was in good form on the day in question). He asked me had I ever seen a program we watched all the time together and one day asked my uncle to get him out that my mum had kidnapped him. You know deep down you cant make them remember but it's so hard not to keep trying and of course throughout you're a big bag of tension and stress. OP you're doing a lot, you'll have conflicting advice here as people deal with things differently. We moved in with my parents to help, as did my sister. I had friends in similar circumstances whose parents went into a home. It worked out well for them, our way worked well for me. None of us have regrets. Talk to your dad and sister. It's such a hard time and a difficult chat. Best of luck

Honeyroar · 27/04/2021 11:33

You’re not a failure at all though. I think elderly people are living so much longer nowadays and needing more care, so there’s more pressure on our generation- who have to work as well as care!

When my mil had to go into a home that wasn’t another massive battle (at that point she’d started wandering and cooking things that shouldn’t be cooked, like the toaster!). We told her we had to go away and there was nobody to look after her that week, but she could go and stay at X until we returned. It was a big struggle, but she eventually settled well.

The care agency we use is called Home instead and I think it’s National. Gives you somewhere to start. I think I’m going to have them for my own mum soon. I can’t work enough hours around my my mum’s care to afford to live at the moment.

LondonJax · 27/04/2021 11:37

Is there an Admiral's Nurse attached to your area? They are set up to support the family of the person with dementia. Obviously Covid has changed a lot but they were really helpful to me in getting benefits etc.

Can you Dsis take over the meds ordering and the admin stuff? Things she could do in the evening at home. Some people just aren't 'hands on' people and you're shouting yourself hoarse trying to get them on board. Find the stuff she's good at and willing to do regularly and tick that off your list. Even if it's just she'll take home washing and do the ironing, do the shopping or whatever it's a job done.

Use the attendance allowance the way it's intended - to help the person with dementia. Tell mum and dad you're going to get a cleaner as that means you can spend more time WITH mum. I had this with my mum before she went into a home. I was spending so much time 'doing' stuff that I spent no time chatting which is what she needed. You're allowed to use the attendance allowance for a hairdresser to come in. Wrap it up as a nice treat each week for her - a wash and blow dry with a quick trim when necessary.

You can use the attendance allowance for a cab to the day centre if they don't provide transport. Encourage her to keep going - it does get easier and it's a routine.

DF could get out whilst she's at the day centre so he gets a break. Involving DM in things is also important. I used to change mum's bed but she was in charge of putting the pillows in the pillow cases. It'd take her the same amount of time to do the pillows as it would for me to strip and change the bed but keeping that going is very important. It's hard with your DF but he needs to assign her little jobs in her own home. Even if it's talking through what's needed for shopping - it's her home and she needs to be involved in running it so she feels needed. He needs to change his attitude to this or he'll wear himself out. She can't change, it's her mind at fault not her personally. His mindset needs to change.

Your DH is right, you are wearing yourself thin. I did the same with a then 6 year old - 27 appointments to cover one year and I remember literally being on my knees one Christmas with school stuff, a young child, mum's endless medical things etc., DH was doing his best (he took on the washing, ironing and shopping for mum) but it wasn't easy as he worked full time two hours away from home. I realised I was burning out keeping her going so I started buying in help - which she accepted after a battle. I had to win that battle for my sanity so I dug my heels in.

BTW you may be able to get a blue badge for an Alzheimer's patient. The Admiral's nurse helped me with that and it was a god send as anyone could take her out.

Good luck. It's not easy but try to use the people involved for what they're good at and buy in the rest. DF and DM will just have to knuckle down to it - if you go down, they go down after all (as my GP said to me once). After a while they'll enjoy the company really.

GETTINGLIKEMYMOTHER · 27/04/2021 11:38

I know it’s all too easy for me to say, OP, it you really do need to put your foot down

A lot of elderly people don’t want strangers coming in to clean, etc., but if family carers are exhausted, they may well just have to lump it. One ploy I heard of during many years when I visited the Alzheimer’s Soc. Talking Point forum, was, ‘So and so really needs a little job, so you’d be doing her a favour.’

Or else just a calm but firm ‘no arguments’.
My DM had dementia for many years and I can’t even begin to describe the aggro of trying to get her to have a badly needed shower and wash her hair. She would be angry or tearful, often both, but when she really had started to smell, we couldn’t just let it go.

As for ‘selfish’ elderly people, speaking from experience, unfortunately some people who were never like that before, do become extremely self-centred in old age - they seem to become oblivious to anyone else’s needs or wishes, and don’t care even when anyone tries to point them out.

Obviously this will be more pronounced with dementia, when the person is unable to see anyone else’s POV, but I’ve also known extreme elderly self-centredness in a formerly perfectly reasonable person with no dementia. An old aunt of dh expected a younger friend - who was still working - to drive 20 minutes each way every evening, to fill her hot water bottles! - and was profoundly miffed when the friend said she couldn’t do it any more. The aunt had refused dh’s offer to buy her an electric blanket.

SeaToSki · 27/04/2021 11:43

Im working with my FIL at the moment, he has Alzheimers and MIL tries to be helpful but is supremely selfish.

Things that are helpful

Lists on the wall in big letters and very simple words
Photos of FIL doing something or being somewhere. So a photo of him at the barbers, one at the daycare. They trigger his memory much better than words. I have he relevant photo stuck on the wall next to the list. I am also about to make him a little album of family and friends with names stuck on the photos and another one of everyday places and people he meets, again with labels/names

The careers thing I have given up on as MIL wont entertain it. I am just being clear and very repetitive that when he needs personal help, he will have to go to assisted living/nursing home. Hopefully by the time we get there my mantra will have sunk in.

Maybe you can have a sit down with your father and some lists. Write out all the jobs that need doing for the household to run. Write his name beside the jobs that he agrees that he will do. Get him to work out who is going to do the other jobs, and if he says MIL refuse to let him get away with that. “She cant she is ill..she might be able to do it occasionally now, but she wont be able to at all in 6 months and we are planning ahead” if you wont do this then we will need to find a care home for MIL, shall we book some time to go and look at them” “so once MIL is in a care home will you be taking over these jobs to keep he house running for you?”

Dont let him get away with waffling

Also. You MuST get MIL to sign a durable power of attorney and all the other legal docs that mean that she wont be a ward of the State but that you or FIL can act for her (medically and legally)when she is legally incompetent. You need to do that this week.

justanotherneighinparadise · 27/04/2021 11:48

I agree that your first duty is your children. I’ll admit I still have some resentment towards my mother for all the time I lost with her when she was away caring for her own mother. I might have felt differently if her own mother had been a nice, caring grandmother but unfortunately she wasn’t. So I was just left with anger towards it and I promised myself I’d never do the same to my children.

I also think your father is being rather selfish. It’s obvious he is burdening his daughters with work he considers ‘women’s work’ and I’m left wondering what the solution would be if he only had sons.

labhra · 27/04/2021 11:49

It sounds awful for you, not to mention exhausting. I think your dad should definitely be doing more - maybe some stern words are needed there - I know what you mean though about not being able to actually force him to do things so you end up picking up the slack. I agree they should be giving you a little financially too - do you feel able to outright ask your dad for this??

I agree with your husband. You should help, but you can only do what you can do. Otherwise you risk running yourself into the ground and burnout.

randomer · 27/04/2021 11:52

There is a hell of a lot going on here on the surface and under the surface.

I would suggest you find a good therapist and begin the process of looking at some of the issues here and gettign some support for yourself.

You are a valuable and interesting woman, not just a parent and a carer for one and all.

Regarding "selfish", I would say self absorbed. Neural pathways firmly in place, no chance of any change of taking on new ideas.

Make sure paper work is in order....Power of Attorney.
Get Attendance allowance.

I could write a book on this..having found out the hard way for nearly 20 years.

Dontbeme · 27/04/2021 12:07

I honestly don’t think I can have a decent conversation with my dsis over this and ask her to do more as she is quite immature at times (even though she is 46!)

What does you brother do to help? You haven't mentioned him in regards caring and maybe you sister is keeping distance as she knows she is being lined up for full time as she has no children.

This thread is very similar to another here a while back, overworked married with kids poster, demanding recently bereaved mother and a sister that was not married, no kids and demands were being made of her as her life was "less full" without kids, she also finished work at 4pm too.

81Byerley · 27/04/2021 12:09

I understand that your Mum doesn't want a carer. My ex is disabled by a stroke, and employs a PA who will do anything, housework, paperwork, phone calls etc.. My ex mainly uses him for outings. Do you think if you organised something like that, and used different language your Mum might accept it? For example "Your friend Carol is coming today. She says she can take you out to the Garden Centre for a cup of tea". Then maybe Carol could gradually start doing household jobs as well.

Hardbackwriter · 27/04/2021 12:09

I think a lot of people who were never selfish previously can seem it in old age because it's too painful for them to admit how much help they need and are getting so they minimise it and the effort it takes. This means they seem both completely unreasonable in their expectations and very ungrateful. In their mind they're asking for the odd favour, in reality it's become a full-time job that they won't let anyone but family do.

Milkshake7489 · 27/04/2021 12:14

I think it is your dad not your sister who needs to hear some home truths...

In your position I would be blunt and tell him you are extremely disappointed in him and he needs to take responsibility. It's not fair to expect you to become his stand in wife because he can't bring himself to do basic housework. Flowers

Crab0nnT0ast · 27/04/2021 12:14

You can complete a form at your local pharmacy & they will deliver regular medication free. You just phone to re order it or online before it runs out

Why do you need to be there 6 days a week ?

Why not go every other day ?

What would your parents do if you did not live locally ?

Crab0nnT0ast · 27/04/2021 12:16

Yes there are cleaners or carers who will do laundry, changing sheets, duvet & other cleaning

However, this comes at a cost

So who is going to pay for it ?

Anonmousse · 27/04/2021 12:24

My Ddad was a bit like this, he was quite adamant that he was fine in the house on his own, even though me and Dsis were doing all the cooking, cleaning and laundry, and occassional shopping. He would forget to eat or drink if we werent prompting him.
I dont think he was selfish, I think he was almost unaware of how much we were doing rather than just "visiting", and would be very frightening for him to think that he was incapable of looking after himself. He had carers for a short while, and then went into a care home. We felt shit about it but it was a relief not to be constantly worrying if he would have fallen out of bed, or if he could get out of the house if there was a fire, for example. When he was admitted to hospital (before going into a home) both me and sis said we slept a full night for the first time in months.

AiryFairyMum · 27/04/2021 12:33

You need to have a proper chat with your sister. Raise questions, keep it open, let her make suggestions. The likelihood is that money will need to be spent on care, if neither of you wants to take it on, or do it between you. She may be banking on you doing the lion's share of the work, her doing a token amount, and not eating into your parents' savings, so it's worth having the chat early.

AiryFairyMum · 27/04/2021 12:34

Sorry, I didn;t see you have a brother too - he needs to be in the chat as well.

Crab0nnT0ast · 27/04/2021 13:08

So you are working PT to help look after your parents

What would happen if you went back to work FT ?

What happens if you want 2 weeks holiday ?

Why can't your DF take your DM to doctors & day centre ?

Lillygolightly · 27/04/2021 14:24

@ImaHogg

I’ve experience with this, having cared for both FIL (stroke) and MIL (Alzheimer’s) I understand how difficult it is.

My advice is to get care in as soon as you can. I know you maybe thinking that it will be easier to get your parents to accept it as your mother further declines however this is often not the case. As Alzheimer’s progresses the person suffering often become more difficult and less accepting of new things and even familiar things so their world keeps gets smaller and smaller. The sooner you have things in place the better chance you have of it lasting, and actually helping in taking away some of the burden.

Don’t cancel the day centre, it’s much needed respite for you/your father. My MIL said she hated the day centre too, but what she hated was going there, once she was actually there she had a really good time.

Alzheimer’s sadly only gets worse and things will get progressively harder to deal with. As difficult as it is a frank and honest discussion is needed with your Father. I looked after my MIL right until the end, and there are so many situations that arise overnight or out of the blue and it’s a constant game of catch up, so it’s wise to have an idea of what your Father may want to do when your Mums care is beyond his capacity and to plan for when the happens. It may feel selfish but it will honestly be in your mums best interests as well as everybody else’s.

Feel free to PM me anytime if I can be of any help.

Chanjer · 27/04/2021 14:28

I do spend all of my time looking after my mum. She's not keen on a carer, I'm not that keen on it either but she needs someone with her every day so I have up my job and have been doing it for a year and a half

Your situation sounds very different though and I don't blame anyone who doesn't want to do it. I don't really want to do it but what you gonna do?🤷🏻

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