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

[ImaHogg]

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?

Bar stepping back I don’t know what the answer is. You can’t force an adult to accept something they don’t want.

But @Angeldust2810 that's what your mum is doing to you. So that works both ways. I found that once I put something in place, my dad would accept it as it did make life easier. I started booking online shopping for him and then he saw the benefits of having sausage rolls and ready meals arriving at the house! Book milk delivery as a trial for a couple of weeks and insist she should want to support a local company and farm!

My MIL struggled with the idea of carers coming in, but she lived alone, 150 miles from us and there was no alternative.

Once they started she was fine with it and enjoyed the company. It was the idea that she couldn't handle.

But for goodness sake, your mum has a husband. I really think that a man to man chat from your DH would be an idea. Someone has to step up and prioritise you and your children. If your DH would have a calm but firm conversation about your dad leaning on you way too much, I think it would have more effect than you talking to him.

As for your sister...maybe she's the one being sensible? If you only did the amount that she does, your dad would have to do something, right? While you're taking these jobs off his hands, he doesn't need to do them. Your sister seems to have good boundaries.

Another example again of something so simple was over a duvet. Mum told me hers was soiled. I went out that day and bought a new one. All I’ve heard since it’s the wrong tog and she wanted us to go buy one together to “make a day of it!” To the people who are saying just get cleaners in or whatever, has anyone actually ever done this against someone’s wishes? If so, how? Did you pay for it?

AIBU to give up so much of my time and energy looking after my parent? Would you do the same?

Yes you are unreasonable doing this .

In a nutshell:

Your own children need you.
Your husband needs you.
Your mother has no right to refuse carers. Be stronger with this!
It may not seem that your mother is ready for a home, but it's not as if she's happy now is it? The home would solve a lot of your problems.

I really hope the elderly parents board can help you because this situation sounds extremely difficult. Please value yourself and get more help.

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.

@GooseberryJam

Bar stepping back I don’t know what the answer is. You can’t force an adult to accept something they don’t want.

But @Angeldust2810 that's what your mum is doing to you. So that works both ways. I found that once I put something in place, my dad would accept it as it did make life easier. I started booking online shopping for him and then he saw the benefits of having sausage rolls and ready meals arriving at the house! Book milk delivery as a trial for a couple of weeks and insist she should want to support a local company and farm!

She’s certainly trying but I have a choice not to do it. The trouble however is if I don’t, she will not accept professional help but just do without. So what, I leave her without shopping, washing, cleaning etc because that’s her choice? I know I can but it’s not a comfortable place to be.

So so hard.
You are taking on to much OP. Your parents are not your responsibility and you should not need to spend all that time with them. Sorting things out setting things up OK- but not on an ongoing basis. You are going to end up destroying your marriage and your relationship with your kids if you are not careful.

Sit down with a coffee and make a list. Look at everything your father expects someone else to do. And also look at his needs. If he is never getting his time 'down in the shed' then it is understandable why he is struggling with everything else.

Now things are opening up can you find a mobile hairdresser who will come and do your mums hair once a week - and give your dad some 'shed time'. Or maybe if she's physically able get her booked into a salon. Lots of the small local ones do a pensioner morning for just her type of people. Can your dad drop her or arrange transport/taxi?

She needs to stick with the daycare - if that means finding another one then so be it. And get her on the list for transport or find a sympathetic taxi driver - daycare provider can help with this.

Find a cleaner/laundress who is used to elderly residents and will work with your mum to get these jobs done. Providing her company as well as the end result. The daycare centre might be able to help with this or a local volunteer group perhaps will have contacts.

You need to get your mum occupied without relying on you or your dad - take the pressue off all around. Don't try and force your sister to do more. She won't, she'll resent you asking and you'll resent her not doing so. And at the end of the day she isn't obliged to - neither are you!

Why should your own DH and DC suffer? My own DM always said she'd go into a care home if necessary rather than put the weight on us. As it happened this was not necessary but we were lucky as she did not get dementia and had a short illness.
Difficult as it is, I think you need to tell your DF that you cannot take this load and will withdraw your help but are happy to help you DH arrange the necessary help (as you say they are comfortably off).
A friend had to arrange a private carer as her husband had a stroke and they did not want him to go into care. It has worked very well for them.

@Angeldust2810

Another example again of something so simple was over a duvet. Mum told me hers was soiled. I went out that day and bought a new one. All I’ve heard since it’s the wrong tog and she wanted us to go buy one together to “make a day of it!” To the people who are saying just get cleaners in or whatever, has anyone actually ever done this against someone’s wishes? If so, how? Did you pay for it?

I paid for some stuff but I persuaded my dad to put me on his bank account so I could organise payments. He was much more amenable to that as my mum had always looked after their finances and he didn't have a clue. I would recommend anyone talks to elderly parents about power of attorney (which I also got) but an easier first step was being added to bank accounts.

Other than that, I arranged it and booked it myself. I heartily recommend saying it's a trial thing or 'just while I'm having this busy time at work'. What people don't want to hear is 'you'll never be capable of doing this for yourself again' which let's face it, is tough to accept - so frame it as a bit of help just for now. My dad believed until the end that he would be able to go home 'at some point' from the care home I eventually found for him. That wasn't going to happen but thinking it would made him happier and he'd lost the sense of time passing anyway. I went along with this and never regretted it.

@saraclara I think in some cases it is more an issue of backlog than hiding...

Sorry, mistype "happy to help your DF arrange the necessary help."

The more you do, the more will be expected of you. It's a horrible, thankless, endless task. You DO NOT have to do any of it.

Many women are trapped in the FOG (fear, obligation, guilt) that is part of our conditioning.

You have to decide what you can and cannot do. It is not up to you to tell your sister what she "has to" do. That is entirely her choice. If your DF cannot cope, then a multi-agency approach will be needed. This will include their GP and adult social services.

Their lives are not more important than yours.

@Angeldust2810

Another example again of something so simple was over a duvet. Mum told me hers was soiled. I went out that day and bought a new one. All I’ve heard since it’s the wrong tog and she wanted us to go buy one together to “make a day of it!” To the people who are saying just get cleaners in or whatever, has anyone actually ever done this against someone’s wishes? If so, how? Did you pay for it?

I don’t know how I’d get a cleaner in if my parents were against it, I couldn’t afford to pay for it! It’s a tough one.

Speak to Ur mum's Gp or social work tell them every thing you have said above. There is help available even if it's just someone to sit with your mum whilst Ur dad goes out or into garden, they can assist with washing bedding an Ur mum's hair an personal needs. Your mum also needs to accept that you can't do everything. This is coming from someone who has been through it, still am but now have care in place which has saved my sanity.

The problem with dementia is the fact mum has a five second memory. You can discuss things with her but she will instantly forget and she will get so upset when the time comes as she says things have been sprung onto her, no one tells her anything, she’s been kept in the dark etc. It’s heartbreaking to see her get so upset and confused. She does this every week with the day centre, I have to tell her every day that it’s coming up and she seems fine but on the actual day when I need her to get ready to go, she cries and says she doesn’t understand, she can’t remember the place and no one has told her about it. She will be like this with a carer.

@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 am beyond frustrated about this. No one has helped. Mum has a very nasty leg ulcer at the moment which her gp misdiagnosed as she couldn’t see the picture well which we had to send her. No one will come out only the poor nurses who have been burdened with everything. Even mum’s 6 monthly dementia assessment via the hospital is now over the phone, how the hell do you assess someone’s cognition via a phone call with my father?!

A professional carer will be used to that though. It's not unusual. My Dad's carers handled him being difficult really well and kindly. It's easier - though not saying care work is easy! - to handle that when you're not emotionally involved because it's not your mum.

Bless your heart,you are doing too much and you will make yourself ill at the rate you are going.
With the attendance allowance get some help in with the housework.
Social services should be involved too to help.
Speak to ss about what help you can get,whether your mum's GP needs to refer her ,then sit down and work out a fair way forward for you all that is fair,don't take on,or continue to do 90% of the work,you will end up unwell and resentful.
As you said,it's a horrible disease and your mum will become less aware as time goes on.
Perhaps your dad needs help from the dementia charity to help him come to terms with the affects its having on his wife,he needs to be able to talk about it and maybe he can't do that with his daughter?it's a steady loss for you and your sister too so look after yourselves.

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 do try and arrange for some things but they get cancelled. I arranged for mum’s chiropodist to come to the house last week as mum’s nails are awful but dad cancelled it on the morning because mum said she didn’t want it done! Same with hairdressers, a couple of times appointments have been made at a local hairdresser only for the appointment to be cancelled last minute or they didn’t turn up because they forgot even though I keep their calendar up to date and remind them but sometimes things slip the net as I have my own things to remember.

I would, with help; it's nice looking after parents, or at least I think so, but you need time off to relax or else life is all work and no play.

This sounds so familiar - I had the same with my Mum and my Dad was the same as your Dad is being, they think shouting will make things right.

Be careful not to get too involved as when your Mum sadly passes away your Dad will continue to rely on you and will expect you to do everything for him - I get at least two phone calls a day (hence the user name). My Mum passed away 6 years ago.

My Dad is grumpy if I do not drop everything and do what he asks, he does not realise I have my own Family, including a Disabled DD, who will always come first and he gets annoyed when I refuse.

I live an hour away and he thinks I can just drop in as I live around the corner ! The lockdowns have been a Godsend.

With Family I had to shout at them and give them a few home truths and tell them I cannot do it on my own they needed to step up.

The best things we did was get a hairdresser to come to their house once a week to wash and dry my Mums hair, we arranged a cleaner to come in once a week, and we insisted on carers to bath Mum or even to just sit and chat to her, they only came twice a week. I think Salvation army might do something or Help the Aged.

Get their medication and shopping delivered.

Mum ended going into rest bite for a couple of weeks and Dad went to visit her most days, when she came home it was obvious she needed to go into a home full time and she was in one until she passed away, it was the best decision for everyone as Dad is in his eighties and Mum was a few months off of her 80th Birthday.

With the medication - there was one my Mum's Doctor prescribed which made her violent, and nasty, as soon as she came off that she was more herself.

The most hurtful thing was even though I did everything for her, she forgot who I was and thought I worked for her and only remembered my brothers who did sod all !

Your Husband is right you are doing too much - you need to set boundaries.

@Angeldust2810

Another example again of something so simple was over a duvet. Mum told me hers was soiled. I went out that day and bought a new one. All I’ve heard since it’s the wrong tog and she wanted us to go buy one together to “make a day of it!” To the people who are saying just get cleaners in or whatever, has anyone actually ever done this against someone’s wishes? If so, how? Did you pay for it?

I paid a cleaner to clean my DFs house. He didn't once catch on that he should be paying.

DF moaned about caring for DM over a period of 4weeks. At the end of the 4weeks she died, she was only 69 and my DF 12 years older but physically very fit said "I can't keep up and down the stairs, I'm exhausted" then went out and about leaving her. I looked after her.

When DF got demented, disagreeable, aggressive and unreasonable I backed further away. My mother died after a short period of pain, he on the other hand is strong as an ox, and has possibly years of miserable confusion ahead of him.

I initially tried, cooked meals, did shopping, took him to appointments but it becomes impossible eventually, it wears you down. He started drinking, going missing, spending money on stuff he forgot he'd bought, gave money away, let strangers in to the house, made accusations about people to police, rang 999 several times a day, set fires, kicked us, tried to kick my front door in, drunk himself into stupor often, fell in the street......it was a living hell. But he's on his own now, in a home. It took my moving house to get social work to even make an assessment. They only intervened when they received a solicitors letter telling them that I would from this day on have no further contact or communication either with him, or them.

My advice is to make your boundaries very clear. Social work have this idea that daughters have a responsibility to care, whilst sons obviously have careers and jobs etc,

I loved my DF but it broke me. My two teenagers became afraid of him. I'm still rebuilding my life and my mental health a year later.

Get as much help privately as possible for shopping, domestic, and appointments. Tell social work you can't or won't look after them. Then spend quality time with them, especially your mum. In my experience they will only provide an assessment for care needs, the parameters are now reduced to only personal care being social care, so unless she needs help with this you are unlikely to get any practical help. If your parents can pay, then you may find as I did that they won't help at all.

Right, first thing's first, money... have you got Power of Attorney? You mention not being able to pay for a cleaner if they won't. Well you need some control over their finances if you're going to manage some aspects of their life. Hopefully your dad will agree to give you PoA. Are they financially comfortable and could pay for some of these support services privately?

As others have said, once you start introducing outside help, they quickly recognise the benefit. Weekly laundry service is a good starting point because they barely cross the threshold, followed by a cleaner, who does come in the house. Then move up to daily food deliveries, they're a good check in as well (will phone you if no one answers). Then you can try to get a carer in.

Adult social services are your friend, make contact, ask the GP to get someone assigned to the case. Can your mum write a letter to her GP giving authority for them to speak to you directly? That speeds things up a lot.

And when you think all avenues have been exhausted, dementia care homes are wonderful places... the staff are so well trained at placating residents, keeping calm, finding things that make them happy. You're not a bad person for letting professionals take over. You and your dad deserve some freedom from what is without a doubt one of the cruellest diseases.

You really need to get in touch with adult social services, and be very firm with them that you can't carry on with the amount you have been doing. It might be worth looking for more hours' paid work so that you can make it clear you simply aren't available. If they offer care, make it very clear to your parents that they have to accept because you won't be carrying on. And be prepared to make good on that, even if it does mean that the housework doesn't get done.

When my mother had a mild stroke and needed care, we got professional carers in twice a day and it was worth every penny. There was a limit to what I could do anyway as I worked full time, but more materially I think it would have destroyed my relationship with her if I'd had the level of involvement that you have. As it was, even visiting twice a week and being on call for medical appointments etc became progressively more difficult as vascular dementia set in and she became really pretty unpleasant. You need to take a big step back for everyone's sake.