[LONG] Facing decades of caring for my parents and disabled sibling, while children still young, and feeling bleak – survival tips, please

[Curryoclock]

I'm a lurker, but could really do with some support from this board.

A bit of context: I'm early 40s with two DCs of my own plus step-children. My youngest is early primary school age, eldest will hopefully go to university in a few years – so both still need me in different ways, and will for years. I work four days/week, and DP and I are gradually doing a lot of (major and necessary) building work on our home, ourselves. (He is skilled in this area, and we can't afford to get contractors in.) Life is busy.

I have always known that at some point, a fairly major care burden will descend on me. As well as my parents, I have a severely disabled younger sister. Our older sibling lives very far away. So I've known that once my parents need more help (I'm local to them and my sister), I will need to step up for all three, because my parents will be able to do less to help my sister.

It's seemed a way down the line, until now. Dad (early 70s) has been experiencing some cognitive decline for maybe a year to 18 months, to the point where I am now helping regularly.

For example, in the last four days, I've spent the equivalent of a working day helping my parents (with logins, passwords, bank stuff, paperwork – that kind of thing) – and I realise this is only the beginning. I'm helping them both – even though Mum isn't yet 70 – because Dad always did this sort of thing for both of them, and so Mum isn't confident with computers and paperwork, so she can't help him now he's struggling. I've also been helping by liaising with medical professionals about my sister's health, which Dad would have done previously.

There are some pluses:

• POAs are almost set up, and my older sibling will be an attorney too and is willing to help as much as possible remotely with admin-type stuff
• Their wills are being updated
• We can talk about this stuff with Mum (somewhat less with Dad)
• I have a really good relationship with Mum, who seems 'with it' (bar being a technophobe); Dad and I have a difficult past, but I'm stepping up and just getting on with it
• My younger sister has her own housing association home and 24-hour live-in care (at the moment)

But my sister has poor mental health, and as a family, we need to step in a lot to help, plus my parents manage all her benefits, choosing and paying for care, health, grocery shopping, liaising with the social landlord, providing care when care arrangements fall through, etc. – so there's still quite a load there, and some aspects of it are already moving across to me.

To top it all, my parents are hoarders and the prospect of some day having to sort out their house, as well as being there for my own kids, plus working, terrifies me.

I just cannot do it all, and I feel as though I need to choose who/what ball to drop. My kids? My parents/sister? My home (i.e. abandon the build and live in domestic chaos forever)? Work? Except I cannot work less to free up time as I need the income. I worry I will under-perform at work because of all this.

DP is fundamentally supportive. He says "we just need to get organised", which I think is valid up to a point – but that's not going to be enough; it doesn't magic you time when you're maxed out.

Has anyone any advice? Reasonable boundaries I can put in place? Tips on how I survive the journey ahead – and even feel happy during it?! Stories of hope? The prospect is making me feel quite low and bleak. I'm not sleeping well. I'm irritable. I worry about neglecting my kids and being diverted by this for much of my youngest's childhood. I had a fleeting feeling the other day that if it weren't for my kids, I wouldn't want to be here dealing with all this. But I don't want to go to the GP and be fobbed off with antidepressants (which I've never had). I need coping and management strategies for this situation, because the source of the problem isn't going away.

Thanks for any words of wisdom – and for getting this far.

My first thought is that your Mother is only in her 60s and has no excuses. She needs to up her technical skills.

There are many courses available...or you can tell her she needs to learn how to send an email etc.

Write all the logins down for her.

Don't be a doormat. Your other sister could quite easily liase with the social landlord and some other admin.

Delegate. Choose what you don't mind doing...do that.

If you weren't around then who would your parents turn to? Think of it like that. It's not all your job.

It sounds exhausting. And I think anyone would feel overwhelmed by it all.

I think an honest conversation with your sister who is far away about the level of help she can give should be your first step. I’m the far away sister in our family so can’t be hands on especially with COVID. I was about to start paying for a cleaner once a fortnight for my Dad who has cancer but sadly it seems quite advanced now and he is in hospital and not likely to go home. My sisters were popping in and doing shopping and cleaning a bit within their various time limits and it was becoming too much.

So could your sister maybe take over things she can do at a distance. Order shopping, pay for a cleaner if necessary, or a gardener every so often.

Look at what support your parents may be entitled to with regards to carers etc.

If your mum is still mentally ok you need an honest conversation about not relying on you too much. If she is not yet 70 she can presumably manage reasonably well with most things?

You do need boundaries. One day a week when they don’t call on you unless in an emergency.

Also are your older children in a position to help a little? Shopping, cutting the grass, helping with online banking etc?

You have to draw big strong boundaries here!
Your parents need to put all bills on direct debit and change their bank accounts back from online managed to 'in branch' (changing banks to one with a local branch if necessary) if your mum won't learn to use them online. Same with utility bills etc. Get her a big file with separate areas for each thing and she files letters in there.
Your sister, you need to have words with your parents and say that for her long term well being she needs to move into a group home or similar so that you don't have to deal with food/carers/landlord etc. It will be harder work in the short term to hold firm on this, but much more sustainable in the long term. My cousin lives in a group home with 24/7 carers and 3 'housemates' and my aunt got her in there when aunt was 60 for exactly this reason that she didn't want the siblings to have to organise everything for her.
Can your mum not do the liason with doctors, or does she just not want to?
As someone who has come out the otherside of having small children and parents who needed care (my son was 1 when mums dementia became apparent, and they died when he was 14), I can only say that your children deserve a childhood, and you deserve a life of your own. Don't allow yourself to be guilted into doing anything you don't want to be doing for the next 20 or more years.

Exactly what CMOTDibbler said. Your mother will get more confident with technology by doing things with it, maybe with a bit of coaching at first. It's worth making the effort to get her up and running because there's easily another twenty years of this ahead. She too has to step up and get on with it, it can't all be you. Why isn't she the one talking about her daughter's care? If they have the money to pay for it outsource everything you can - cleaner, gardener, meals service because that is buying you time.

The lesson I did not learn which I wish I had is that you are not your parent's parent. You do have a life of your own, separate from theirs. The temptation to swoop in and make everything right is a strong one but it's their life and the things you do for them they won't be able to do for themselves. It sounds harsh but if I'd put petrol in mum's car (dad always did that) back in 2002 I would have been doing it for the next 18 years. As it was I told her she could learn how to do it like every other driver out there did or stop driving.

It will be easier for your mother to stand there and let you take over from your father but there's no reason she shouldn't be the one stepping up. She's young enough to learn to do the things that he's done and then spend the next 20 years doing them.

Great advice from some veterans of the elderlies boards. Many of us have learnt the hard way to get care/ cleaners etc in as soon as you can to establish using outside help.
And do get your dm to do more tech wise. It will help her stay mentally well

I am you but 15 years on. Elderly mother with dementia and an autistic sibling living at home with mum. I could only ever work 3 days max a week as I had to fit all the admin and care in for my mum and sibling. It has made me very resentful and cross with myself that I've let the situation continue for such a huge chunk of my life. My advise would be not to find solutions. Take a big step back and let your parents sort out the issues.

@FortunesFave

My first thought is that your Mother is only in her 60s and has no excuses. She needs to up her technical skills.

There are many courses available...or you can tell her she needs to learn how to send an email etc.

Write all the logins down for her.

Don't be a doormat. Your other sister could quite easily liase with the social landlord and some other admin.

Delegate. Choose what you don't mind doing...do that.

If you weren't around then who would your parents turn to? Think of it like that. It's not all your job.

My mother was 82 when my dad died. She had already started to manage their finances online. She manages everything now, with me just handling more complex financial matters or advising on account -switching.

Your mother needs to start learning. My mother found the iPad more intuitive than her laptop for finances and bills.

Agree with others that getting your mum up to speed with tech would be a good idea!

Ah, your older sister must live next door to my sibling in that far away place where there is no internet … excuse my bitterness. I am 2 years in without the challenge of a sibling who also needs care. My serious point is that 90% of the stuff that needs doing is online and remote anyway. You say your sibling hasn’t been able to do much, well they can particularly handling benefits and other form filling/ account handling type stuff. If your mum can get to grips with the tech so much the better but if not get her older sister to take on some of these tasks. It’s commonly recognised that it’s not just the physical load that takes a toll it’s the mental one. You are offering yourself up as chief manager carrying the mental load. Don’t do it.

If your sister has 24 hour care then her carers should be supporting her to do her shopping. You must explain to them them your parents can nolonger do this and neither can you.

Name change for this.

OP I sympathise fully with your situation having been through a situation which has similarities. Do not put your own life on hold - it just makes you angry as another PP has said at a later date. Get an assessment done by adult social care for your DF. Check practicalities such as council tax reductions have been done, attendance allowances set up etc. Get ALL of the maximum care available whether chargeable or not. Set up online food deliveries for your parents and sister. Outsource cleaning, gardening, maintenance. Set days on which you will physically visit/phone support. Do not make these days your day off your job or the weekend. This is your family/home renovation time. Your remote sister can travel or take over on these days. It is the weekend after all usually what happens after a while is that the remote sibling gets pissed off with all of the weekend travel and starts to do more in the week. Then you do less in the week and still stay firm about weekends. Win-win. I make it clear what days I’m going over and who has responsibility for what. My own situation is made more tricky by my mother being a self absorbed narcissist who is also a hoarder so I help because my DF deserves more. Both are bedbound. My sister sadly is also a self absorbed narcissist. She is also sly and very focused on inheritance so if you have a better relationship that is great. Sadly I have the added issue of a sibling trying to get control of their finances but couldn’t give a shiny shit if they have milk in the house or if the dog has food. That is quite wearing…DF has advanced dementia, M significant cognitive decline. Despite several attempts to organise them, my work was undone quickly afterwards by my M. Then they both went into hospital at the same time and social services demanded some alterations were made to the house to accommodate medical beds etc. As it was clear they wouldn’t walk again and couldn’t argue over disposing of redundant packaging or paperwork (tv licence from 1968 anyone?) I hired a skip, a shredder and went through the house by myself and then organised everything. It was actually easier than i thought it would be without interruption and in reality took about three full days. Do it just once. Get someone in to deep clean after you. Then label everything. I did a massive IKEA run and I stalled ‘kallax’ units (£20 or so) with labelled boxes for bedding/towels/medicines etc. I introduced a ‘how to’ book for visiting carers with instructions everywhere. Including who to call on what day. I bought a tumble dryer and installed two giant linen baskets labelled ‘dirty’ or clean. The carers know to put at least one wash on every day. Carers have enough difficulty with their jobs without having to fight for space to make a cup of tea so the easier you make it the easier everyone’s life is. I really understand how overwhelming your situation is. It sounds simple but hoarders do not share the same view of mess as normal people so make it clear to your parents and sibling that you are helping on the basis that it needs to stay organised or you simply won’t be able to help. Good luck to you and keep posting for support.

I can sympathise with you Op. I had the same with MIL when FIL died, she had never paid a bill or done food shopping herself in all the years they were married. Plus a disabled SIL, my own disabled child and various other factors. It does get on top of you, and you sound like you're at breaking point.
My advice, try to filter the days you're helping into a few days rather then every day if you can. MIL liked certain things done on different days (like putting the lottery on, getting sausages from a certain butcher mikes away), I was practically there every day. I eventually told her I couldn't cope with it all and told her to chose two days where I'd help her to do everything.
You need some days to yourself and your family.
WRT your sister, are you able
To become her appointee so you can take that from your parents, that way you can deal with stuff more effectively, again condensing in to a few days.
If not, your parents need to reassess her current care and be harder in the care company to provide care when needed. The more they cover absent staff, the more the care company will take the piss by not replacing and covering.

Hear hear!

DH is the far off brother in the ageing parents scenario and he was able to do a lot by phone / email to help his sister, who was local. It wasn’t an even split and required a lot of tact and coordination. He spent a lot of time calling medical and social services etc.

@CMOTDibbler

You have to draw big strong boundaries here! Your parents need to put all bills on direct debit and change their bank accounts back from online managed to 'in branch' (changing banks to one with a local branch if necessary) if your mum won't learn to use them online. Same with utility bills etc. Get her a big file with separate areas for each thing and she files letters in there. Your sister, you need to have words with your parents and say that for her long term well being she needs to move into a group home or similar so that you don't have to deal with food/carers/landlord etc. It will be harder work in the short term to hold firm on this, but much more sustainable in the long term. My cousin lives in a group home with 24/7 carers and 3 'housemates' and my aunt got her in there when aunt was 60 for exactly this reason that she didn't want the siblings to have to organise everything for her. Can your mum not do the liason with doctors, or does she just not want to? As someone who has come out the otherside of having small children and parents who needed care (my son was 1 when mums dementia became apparent, and they died when he was 14), I can only say that your children deserve a childhood, and you deserve a life of your own. Don't allow yourself to be guilted into doing anything you don't want to be doing for the next 20 or more years.

Exactly all of this. It sounds like the more you do, the more you'll be expected to do. Your mum could learn how to use email, has she never done this at all? And if your dsis has 24 hr care this absolutely should include the help you're getting asked to do. Who assessed her for this and is funding it?

I had actually never thought about long distance sibling being able to do some of the online admin. I've let them off the hook haven't I? Think I might toughen up on this one.

It’s the hoarding, I totally understand those feelings. It’s like ‘how am I going to handle what is coming down the track at me’
I gave myself an ulcer from stress a few months back, just when I saw the scale of the hoarding at my parents house. It struck my so hard that I would be the one dealing with this and my plate was already full.

Then I had to have a chat with myself and stop letting my brain go too far into the future because nobody knows what the future holds and I have a life now that I need to live.

So I put it all out of my mind, stepped back completely from helping my parents and am trying to enjoy my life more now.

Any nice parent would want their child to be happy so just look after your own health, your parents are young. Start putting things in place this week that takes you out of the picture completely, and start spending enjoyable time with them instead and enjoying your life.

I'm the long distance sibling when it comes to my mum's care. She's in an extra care facility with carers coming in and out. My brother is on hand for practical stuff, but things are set up so that he doesn't have to do too much. Her shopping is done by carers as part of her care package, for instance. To relieve him, I did everything that I can from a distance. I'm the emailer, the phone call maker, the one that follows through on problems or issues with her care.

There are probably things that the care services are assuming your family will do for your sibling, that actually could be part of her care plan. It wasn't until my brother and I spelled out that we would not be supporting her move to an extra care flat from her care home (a decision made by the council) that suddenly room was made in mum's care plan for the stuff they'd expected us to do.

So your mother isn’t that old at all? Get her on some IT courses and let her become a functioning adult. She might enjoy a new found confidence. Most sixty somethings don’t need care.

Get your sister reassessed with a view to increasing the amount of external care provided. Tell local authority your mother needs to step back because your father needs support now. They should be planning food, personal hygiene, medication etc.
If no carer turns up, report via safeguarding every single time and lodge a concern with CQC. There should be contingency plans.

Depending on your sister’s disabilities, would supported living be more appropriate? What about residential care? She will age too and her needs will become more complex, so planning for that is better sooner rather than later.
Her care needs have probably changed and her plan does too.

Get your sister reassessed with a view to increasing the amount of external care provided. Tell local authority your mother needs to step back because your father needs support now

Yes. This is absolutely the right time to get her care package amended. Social care works on the presumption that while family members will do stuff, they needn't.
You fathers declining health and your mum now needing to care for him, should be the catalyst for the authorities to step in more for your sister.

You and your mum will have to be absolutely firm though and be prepared to sound like bitches. The slightest bit of wavering or "Well maybe we can do..." And the powers that be will seize on it.

I'm in Scotland so position will be different, but I'm just thinking about your sister going forward. Here she would have had to have capacity to grant a power of attorney or a guardianship would have to be applied for once she became an adult.

Is there an equivalent legal process in England, or wherever you are based that needs to be considered?

We had a difficult scenario here whereby my mother wished to be my brothers guardian but was in no position to act on it. So it had to be me and social work in terms of long term planning. It caused a great deal of upset to mum but she was at the stage where her own capacity was lacking.

Boundaries, OP.

Your mother needs to pull herself together and learn how to do things. Do assist her with tech and finance at the outset, offer plenty of moral support, but don’t enable this fake “helplessness” longterm.

Your sister’s care package needs to be reassessed now that your mother will be busier with your dad. Make it clear to the authorities that you’ll be visiting her as a sister not as a carer.

There’s no reason why your life should change drastically, surely? It can’t anyway, with two minor children in the mix.