Is it always this difficult?

[elliejjtiny]

I know it probably varies hugely.

Dh's grandad died last week. Him and his DW had 6 dc between them (blended family). They had carers coming in 3 times a day, a cleaner and someone bringing round dinner every day but inlaws were still going down there every day for 4 hours (their other dc were taking it in turns to come as well) and cooking, cleaning, doing personal care etc. MIL said they still need to come down every day this week to supervise the removal of all the medical equipment and to help clear the house etc.

Before all this I assumed that the carers would come in and do what was needed and if you needed more care than that you go into a hospice/hospital or nursing home. Of course you would still visit your elderly relative but no need to do the work of caring.

Now i am getting worried. Inlaws are currently mid to late sixties so we have a while to go yet hopefully. But dh is one of 2 children and we have dc with disabilities who are likely to need us a lot until we die (and after that, goodness knows what will happen then). I know it's stupid to worry about stuff this far in advance but i am wondering how on earth we will manage to look after inlaws as well as care for 2 disabled adult children when we are getting older ourselves.

Hoping someone can tell me that having care needs to that extent is rare and in 15-20 years time there will be free robot carers for everyone who wants one.

Well of course every situation is different. If care is needed you do what you can / want to do. If you’ve siblings you hope they pull their weight, or more if the other sibling has their own responsibilities to prioritise, as you do. It doesn’t always work out & it’s tough.. buckle up, but wouldn’t waste time worrying now about something you’re not yet in. Have an eye on it & perhaps a conversation with your dh’s siblings to lay the foundations.

I presume the house will be sold or returned to a landlord. Obviously a weekly clean won’t be enough.

It does vary. And it has to be said that there are situations that work out very differently. Dp’s dad sheltered very heavily from Covid for 5 years due to other medical vulnerabilities, and that caused some issues, but he remained 100% cognitively able throughout, and his final decline was a very tricky 6 weeks but that was it. Of course we helped, because we were there, but they were on the ball enough, rich enough and thank goodness SENSIBLE enough to have managed without us. They had every tech help you could imagine plus cleaner, gardener etc. When there were situations that couldn’t be managed at home, he went into hospital.

So please try not to spend the next 20 years worrying about things that may not happen - it’s quite bad enough when it does. Of course it’s worth future proofing (dp’s dad had simplified his accounts, they had PoA etc) and your main focus must be planning for your daughter, but please don’t agonise over things that are not certain and a long way off.

I do wonder what they were doing with the grandparents for 4 hours every single day??

You just don't know, we're in our late 50s with just about adult DC, most friends are similar ages and it does seem as though elderly parents have been dominating our conversations for the last few years but it has been different in every case, and virtually everyone has had or is having a hard patch but got through it. Advance preparation with LPAs, good record-keeping etc really does help with the admin side. I don't know anyone who has had to spend 4 hours a day caring for parents as well as having carers, cleaners etc in, it's doing the admin/arranging care etc and helping with jobs around the house, taking them to appointments etc. Also depends how close you are geographically, your own other commitments etc.

If you offer someone 4 hours a day they will find things for you to do. If you can only manage once a week for 3 hours they will sort out what they can and only ask you to do the absolute essentials.

The last few years of my mums life were awful for her and she made my life a misery, probably not deliberately as her mind was going though no dementia diagnosis. While she was still at home she had a carer come in daily for a short period to help showering, she really only needed supervision for that but she had endless complaints. She had a cleaner. I lived very nearby and finally was with her daily 4, 5, 6 times a day. She was awful to me as she was frustrated. She wouldn’t accept any other real help, sincerely believing she was going to do it but then forgot. There were all sorts of other issues living alone. Finally she was hospitalised (took 5 ambulance call outs, me crying to the gp when he phoned to find out what was going on and deciding that she could no longer live alone and we should get her to hospital and then a home, a paramedic pretty much bundling her into an ambulance (thank goodness for him) and her screaming abuse at me as this was happening. She spent the last 18 months of her life in a care home, which she hated and still made my life miserable, abusive even in the last days of her life but she was far better looked after than the previous few years. It wasn’t her really but it hurt like hell as I felt I’d always done my best and everyone else was suffering (husband and 2 teens, just done a levels and GCSEs). I’m in my 50s (late child) and having a horrid menopause at the same time. I’m her only child so it all fell to me, on a good day she recognised that.

I would say though this really only got that impossible when she reached her late 80s. Until then she was increasingly lonely and needy but it was ok. She moved across the road from me at age 83 from the family home about 30-40 mins away, may or may not have helped. I’m sure it kept her in her own home longer than otherwise. A lot of her problems were down to her personality and her sincerely believing she was doing all manner of things that she hadn’t been able to do for years, not accepting the help that could have been given.

I know it’s a scary thought but you can really only do what you can manage. Try not to worry now, if your in laws can plan ahead that would help but sadly many just don’t. I suspect many of us who have done this will plan better, I don’t want my children to have the life I had when I’m elderly. They may not have a long road of poor health. We might even get a grip on the care sector.

Honestly, I think I walked into this phase of my life in complete ignorance, so while I wouldn't over think it, I would probably plan better if I had a second chance.

First off, it is like a game of "Whack-a-mole". I am constantly fire fighting. Everything about the system is geared up to make is as difficult as possible to sort care, finances, support. And that is before you even begin to try and persuade the elderly relative they need help.

I am mid-40s with school age children at home and a career. My ability to be a good Mum and earn has taken a hammering this year, and I can't see it getting better any time soon. I was totally unprepared for this, but for various reasons it has both come earlier than anticipated, and with no back-stops which I had been promised were in place.

I would love to tell you it will be ok, but my advice is to have the conversation with your loved ones sooner rather than later and make sure you are very clear now about what you will or won't do.

I agree about wanting to see evidence of what you have been told has been done… (will, advanced directive) but in the end you are not your parents’ boss.

The system will do the absolute minimum.

many elderly people resist even that.

i am severely physically disabled following an accident. My mum therefore has to manage on her own despite trying to guilt trip me into providing care that I am physically unable to do (I have carers of my own!)

I wouldn’t say she’s happy about it - she’d like to have me living with her so she can bitch to me endlessly but she copes. She has a gardener. Refuses to have a cleaner but that’s ok by me, I refuse to stay there.

eats mostly ready meals from m and s.

only about one in three people (current elderly people) need care. Two in three die without any social care involvement - either at home or in hospital.

It’s entirely up to you OP how much you do. My only pearl of wisdom is that it’s easier to say no from the outset- changing to no part way through is harder. As far as SS are concerned you just can’t- no reasons, excuses, or rationale required just ‘no, I cant’. Elderly people lose empathy, and as their worlds shrink their selfishness can increase exponentially- not always of course, my MIL was a wonderful
human being right to the very end, but FIL and my own mum are as self-absorbed as it gets. If they can choose to refuse paid help then you are just as entitled to refuse to give your spare time. Dig in at the start OP and don’t give more of yourself than you’re willing to keep giving.

We’re 78 and 87, living independently, shopping,cooking and cleaning. At hospital appointments we’re always asked if we have carers! We both go to various classes, play bridge etc. Please OP, don’t meet trouble halfway, hopefully they will be like us and all of our friends..

Perfect advice right here! I absolutely agree.

Problem is you never know what's round the corner. Six months ago my parents in their 80s were living fully independently, busy social
lives etc, no care needs at all, now one's in a nursing home and the other is close to a breakdown and not coping and it is fair to say all our lives have been turned upside down.

Anyway, I don’t want to strike fear with that last post. A bit of advance preparation can go a long way, my parents had LPAs in place and all their financial paperwork in good order, bills on DD etc which has helped massively.

Also @elliejjtiny I am a SEND parent too, my DCs are young ND adults and one of them is likely to need a degree of support throughout his life and that mainly comes from me. But, I have found my experience slogging through the various SEND systems has come in EXTREMELY handy when it comes to my parents. Getting the right care - like getting the right education (one of mine had an EHCP), dealing with benefits - done that with DLA / PIP. Keeping records, networking for advice amongst experienced friends, talking to charities (Age UK have been excellent) and on MN, it has all stood me in good stead.

Thankyou. They were there 4 hours a day because GFIL's DW was phoning them multiple times a day saying she couldn't cope etc so they thought it would be better if someone was there 24/7. They were doing it in shifts. Also both were incontinent so needed changing regularly. Both of their short term memories were awful so they would have multiple visitors several times a day but then they would phone up PIL and say nobody has visited for days, carers hadn't been etc. They would phone during the night as well for minor things that could wait until morning. They would also phone an ambulance multiple times a day and then get upset when they were told they didn't need to go to hospital.

Good to know that my experience of navigating the SEND system will come in handy.

I'm quite happy to do some caring but realistically we are going to struggle to do much when we already have disabled dc who need a lot of support.

Have the conversation now about the future. Encourage any elderly DPs or ILs to organise power of attorney now - in Scotland you can do finance and health combined but in England you can do them separately.

Try and set expectations- unfortunately it sounds as if MIL has a martyr mindset, particularly with insisting all the equipment is cleared away now when everyone could clearly do with a break. Elderly people do become selfish- or I should say many do - but that doesn’t mean that DCs and DGCs have to do everything that they ask. I would also recommend you read “Let Them” and decide what you will do to be a dutiful DD/DIL versus what they want or think they need.

Also it’s down to the luck of the draw. I was pretty lucky until 7 months ago as elderly DPs were relatively self sufficient, now one is bed bound and they both appear to have some form of dementia and I am an only DC who lives an hour away. Other friends have DPs in their 90s who are still largely mobile and sorting themselves out, so you never really know what you are going to get.

Oh and as an only DC, unless I want to give up my own life then I certainly can’t be sitting at someone’s side for 4 hours a day unless its an end of life situation. Sometimes I think the more people there are, the more the “needs” expand to exhaust - and I choose that word advisedly- everyone’s capacity.

I hate to say this op but yes I think it’s getting worse.
Im in my 60’s and in my grandparents era people had a short illness then died. Nowadays we keep people alive year after year after year with ever complex needs. As they say it’s not increasing their lives just extending their death.
It’s not until you deal with old people that you realise how powerful medicine is.