Is this really how it has to be? (Elderly care related)

[Roastingcoffee]

I realise this is a sensitive topic and I hope I’m not being insensitive.

my parents in law have been ill since dc were tiny. We cared for MIL who had dementia until she died last year. I gave up work to look after her; even after she had to go into a home I visited every day and sat with her.

FIL is old and frail. He uses a wheelchair and has a catheter, which regularly gets blocked and leads to a UTI. This happens about once every three to six weeks. We’ve tried everything to avoid it, but short of round the clock medical care (ie more than a care home will offer) we can’t seem to avoid this situation.

he takes antibiotics and normally recovers fully within a few days. Sometimes he has to go to hospital to be put on a drip. Every time this happens DH is terrified that he will die. We all drop everything - holidays, days out, work commitments.

We have never been anywhere with the kids that is longer than 2 hours drive because of worry about PIL (DH is an only child). I can’t keep up friendships because I frequently have to cancel commitments. I think people think it’s an excuse - they don’t believe there can be this many emergencies.

i think that part of the problem is dh’s anxiety that if we are not there all the time the worst will happen, but he is also right that the system has failed us so many times and we can’t trust that anyone else will care. He is going through a kind of living hell of grief and I want to support him.

My youngest has just turned 10 and it made me realise that we have already spent a decade in this limbo, and it could well be a decade more. I love my father in law but, selfishly, I feel like I have given the best years of my life and my career to looking after other people. I’m early 40s. My career is shredded. I have no pension. The rest of my life may well be taken up in caring for elderly people (my own parents are healthy now but in their late 70s). I feel like my whole life is a waiting room.

is this just the way that it has to be? How can I come to terms with this reality?

Yes and often the people looking after them are themselves in their 50s-70s. Goodness knows how it will be sustainable when everyone is working until age 67.

My Dad was diagnosed as terminally ill last September OP, and I completely understand. We had carers in and it certainly wasn't enough to cover Dad's needs. They weren't showering/washing him if they were rushed (the whole reason why they were paid to attend), medication doses got missed if it was a new carer, and it was as much "help" as a chocolate teapot. The palliative care team were great, but the local GP and district nursing team were more of a hindrance than a help, and the nursing home that he ended up in after a hospice stay was no better. You couldn't take your eyes off the ball for a moment, and it was exhausting. All those saying shove him in a home are fucking clueless, excuse my language. The care system does everything but care in my opinion.

You do what you have to if you want your loved ones to have any acceptable quality of life. What you need OP is an agreement with your DH that only one of you at a time has to drop arrangements so that you have some sort of balance. Your kids aren't deprived, they're seeing two parents looking after their elderly relations and you should be proud of that. You're setting an example of compassion, love and care.

I sympathise OP - but you need to stop doing everything you are doing for your FIL - and you need to start looking after you and your DC as first priority.

As others have said, it is very, very hard to tell SS and the like that no, you can't help. I've been exactly in that situation and you need to develop a very thick skin and just stick to your guns with them. You are talking as if the money is insurmountable. It isn't. Get SS to assess his needs and if he needs to be in a home, then they will help you find one. Yes, he would need to be self-funding to begin with but once the capital has fallen below a certain point the LA will pay.

I have some sympathy with your DH - about dropping things when your FIL has to go into hospital for a few days - but doing this for the last 10 years is excessive anxiety and maybe he could get some counselling for that?

The trouble is that, he could, eventually be right and I'm not sure how he would react if FIL died while you were away and hadn't cancelled things? This happened to me last summer. On my knees trying to deal with my elderly Mother, in her 90's and went off on Holiday, desperately needing a break, I was on the point of a nervous breakdown, quite honestly. Told people that if something happened while we were away, my Sister would have to deal with it (she didn't get involved with doing things for Mum, phoned occasionally only and visited her even less). My Mother had a history of falls, into hospital and back out again after a few days. Two previous occasions when she was taken into hospital on Christmas Day and we spent our Christmases in A & E and/or visiting a ward

So when I got a phone call telling me she had fallen again and in hospital but they thought she had a UTI, I did not rush home ( we were over 300 miles away), because it was such a common occurrence. By the time I discovered, a few days later, that she was, in fact, dying, it was too late and she died, in the very early morning, 16 hours before we made it home. I was and am sad I didn't make it in time, but she was 93, my Sister had stepped up to the plate and I was able to be philosophical about it. I have never regretted the decision not to come home immediately because that decision was made for good reasons.

But unless your husband can come to terms with his Father dying at some point, then I think you will have to let him 'drop everything' every time FIL has a crisis - but don't drop everything for you and the kids, or I guess he might never forgive you. I do hope some counselling might help him?

You're clearly very kind and caring people to have helped to this level.

But you don't have to do quite this much / drop everything every time and it probably isn't good for you or your family to do so.

You need to find a way to step back a little and allow the carers and medics to do their thing. Don't give up your job or let your DH do so. What sort of event do you give things up for? What would be an alternative if you weren't around to manage? If it was, say, a UTI that needed a hospital admission, he could travel to A&E via taxi or ambulance or have the GP send him in direct to a ward.

Sounds a bit like you've martyrd yourself and are now feeling the consequences

Read this thread OP - I’m sure it will resonate with you. It’s a really powerful thread but quite confronting.

It’s OK to feel angry about how much you’ve had to sacrifice.

https://www.mumsnet.com/talk/elderly_parents/4866628-so-bloody-exhausted-waiting-for-someone-to-die

I understand what your going through. I’m an only one and have being going through this now for nearly 40 years. My dad became disabled at age 55 I was 27 with two small children. Dad was often ill,often in hospital with a catheter, he had constant low dose antibiotics. Mum at that time was well, but we still all suffered terrible anxiety.
Dad passed when he was 80, mum was still okay, but started with heart problems a few years after dad died. Now she’s 92 and I’m 66 I’m still living with anxiety, over what’s going to happen next, I’ve seen so much. Mum won’t go into care, she has carers 4 times a day, but she’s still on her own 22 hours a day.

I’ve had to harden my heart a bit, very difficult, I visit every few days now and try and enjoy my retirement with my DH and family.

I do sympathise, but having been through dementia with both DM and FiL (who had lived with us for about a year once his dementia became obvious) there is no way I’d have given up my life, or put either of them before my children, for a protracted period.

After not too long I found that living with FiL’s dementia was a nightmare. Dh was away a lot for work at the time so 99% of it fell on me. And I’d always been very fond of FiL, but we’d had absolutely no idea of what dementia could mean in practice - I was almost permanently stressed out of my mind and exhausted - so we eventually found a nice care home for him.

When it came to my mother, some years later, there was no way I was doing it again. I did honestly love my mother but she had never been the easiest person to live with anyway, so what with dementia in the mix…. We supported her at home as best we could until it was crystal clear that 24/7 care and supervision were now essential.

Sounds to me as if your FiL now needs a nursing home (not an ordinary residential care home) where they should be able to manage his catheter. My FiL needed a catheter for quite a while before he finally died, and the NH (to which he moved from the care home) was well able to manage it.

I do know all too well that the care/nursing home decision is terribly hard, and usually fraught with agonising guilt, but contrary to what you may hear, there are some very good care/nursing homes out there, with very good, caring staff.

For all those suggesting care homes, how on earth do to manage to get them to agree to one ? I’ve been trying to convince my mum now for three years, she just won’t hear of it.
She’s definitely not safe at home, she’s already had three horrendous falls which have taken long hospital and rehab stays to get her mobile again. I’m totally stressed out waiting for the emergency calls, I’ve explained all this to her but nothing works.

You have to be blunt and appeal to their better nature. That's what we did. Cried and begged.

I can vividly remember waiting for the emergency calls. It's horrendously stressful. I really feel for you.

This is what a nursing home is for. Time to put yourself and kids first.

Years ago people did care for their relatives until they died. Back then people didn't linger on for years though, there wasn't the treatment to keep people alive for years in bad health.

It's too much for people now. Put FIL in respite care and go on holiday. The home will send him to hospital if he gets sick.

@Roastingcoffee
Might be of use

https://www.carersuk.org/

There should be respite care but if the issue is anxiety at being away away away whilst your Father in law ends up passing away I'm afraid I don't know. I was like that. I cared in effect for 1 parent then the other. I loved being with them but you cannot predict these things. I stuck around like a limpet. Just.in. case.

Except it didn’t, there’s no way I’d have given up work to nurse someone with dementia, they have complex need and need proper care. Why did your H not arrange for proper nursing care?

If your husband is dropping everything for every admission why do you and the children need to cancel day trips? Just do them yourself.

You stop providing care and wait for them to be unable to cope. Blunt, but that's the only way.

Why did it have to be you? It could have been paid carers. Let them know you're going back to work and become unavailable.

There are care visits.

I talk to a lady who's 97 and has visits. She says recently they've actually been scrambling around for new clients (yes there is a shortage of carers but they have now been placed on the emergency list for work permits so a lot are coming from abroad). So it looks like in some places there is capacity, but of course there is a charge.

It is an upheaval having new and different people come into your home.plus there is always that doubt about whether they are trained properly or might be with bad intentions. All I can say is that it's that x 10 if they go into a care home

Thank you for this. I’m so sorry for your experience. The anxiety is real and cannot be assuaged by the care system, which is not set up to really care - it’s set up to make a profit.

Really useful and insightful replies, thank you.
To those who have not yet had to encounter the care system - it doesn’t work as you expect (it doesn’t really work!).

to those who have, I’m so sorry for what you’ve had to go through.

this morning we visited fil after another uti incident. He was fully recovered, which was great to see. But I was so angry that that our holiday plans had been ruined again that I could barely look at him. But it is not his fault and my anger helps nobody. I feel stuck.

I don't know if what I'm about to say might be suitable for your FIL, but worth a look in perhaps. My exMIL has just moved into a retirement place (she does not have assets or capital so this was sorted via SS), which has onsite carers 24/7, and a nursing home wing as well. So she has her own flat, but she has carers coming in during the day to give her personal care. She has the option to either take her meals in her flat, or down in the communal restaurant area. There are activities that she is able to join in with, if she wants. Housekeeping/cleaning/laundry is all taken care of. It's a lovely place. She has poor mobility and needs quite a bit of care (and the frequency of the care call can be increased as needed), but this has been brilliant for her. It allows her to have her own space, but also have all the help she needs. And it means that family can visit her as guests. She's made friends there and is really enjoying it. We as family (I may have divorced XH but I do love my ex inlaws and we stay in touch) are able to be reassured that she is safe, happy and cared for.

Years back, when I was still married, my then "D"H and FIL (now RIP) came up with the "great" idea of my (infirm, frail) PIL moving in with us and me caring for them. You see, I'm a nurse (they expected me to be like a private nurse to them). I pointed out that I was working FT, I was the breadwinner and I was juggling work with two young DC. We also lived in a 2 bedroom flat (as that was all I could afford). My then husband wasn't working but also not doing much about the home or with the DC at all (due to MH), so I had that mental load to sort too. DH and FIL suggested that PIL could have our bedroom, we could sleep in front room and I could work nights and then look after them in the day. I told them no and told DH to move in with his parents if he was that concerned about PIL. I then got The Guilt (I'm from a culture where multiple generations of family live together and look after each other), but luckily my parents and friends gave me a right talking to, so I stood firm. PIL had refused all external help (this was driven by FIL) and at that point lived an hours drive away. I told them that I wasn't prepared to help them if they wouldn't help themselves by accepting external/paid help. I eventually got an apology from XH and FIL but it made me so upset that they thought it would be a suitable and viable plan. With my own parents and with PIL, I did what I could, when I could, but not at the expense of my DC, my own health or my job.

Your best bet is probably to reduce the times you are available. Maybe take it in turns with your DH as to who is available and when. Clear boundaries on what you can/can't do and when. My own parents (now both sadly RIP) told me that I had to look after myself first, then my DC and then my work before I even consider taking on additional caring duties. They didn't want me to run myself into the ground and make myself ill. And that makes sense.

You force a crisis. Put in writing to social services you will play no further part in any care and step right away. No shopping, no visits, no liaison with medical professionals. Give them one weeks notice and do it.
And don't answer your phone to them.

No, the care system doesn't work very well. But the solution you have put in place now isn't working for your FIL, you or your children.

The only person benefiting from it is your husband.

Stop visiting.

And FWIW, when I'm at work, I do say to families of patients that it is completely ok for them to say no to providing care. I remember a man telling the OT and physio that he didn't want a care package or help as everything was set up at home, and that his daughter would provide all his care. When we spoke to the daughter, we found out that she was working FT, had DC with SEN and wasn't in great health herself. Yet her DF was expecting her to drop everything to be there for him 24/7 for sorting appointments, doing personal care, cooking/cleaning etc etc. I know adult social care is on its knees, but I also know that people/families can only give so much.