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?

I can’t keep up friendships because I frequently have to cancel commitments.

You need to re-set your husband's mind that you will not be cancelling commitments unless it genuinely is a crisis. I don't mean you should be off gallivanting three times a week, but if you are going out once or twice a month and there is something that needs dealing with that doesn't need both of you, he can sort it on his own.

Yes, if there is a genuine emergency/end of life crisis that is something different, and absolutely you should be there to support him - but that isn't what is causing you to not be able to maintain friendships through regularly cancelling commitments.

Please don’t be scared by the thought of a nursing home. Yes there have been some truly shocking incidents that have happened with some providers, but the over majority have good staff who will go above and beyond to support your loved one in their service. They do truly care.

Your poor kids! Why did you all have to cancel your holiday? Why couldn't DH just visit him? This is what I don't understand.
Your children have missed out on so much, when they didn't need to. Your DH needs to learn to manage his anxiety and not use you as the default carer. You need to put boundaries in place.
Sorry I have been in a similar situation and had to set very strong boundaries or other people would have had me giving up my life and all free time to care for my mum. As it was I did care for her but with the help of paid and other care (sibling who tried to put everything on me), but without giving up my whole life. Boundaries are key but it sounds like he should be in a care home now really.

Why were your holiday plans ruined if he's almost better?

I really don't understand what's going on here.

District nurse comes weekly to check the catheter? But it potentially gets blocked between visits causing an infection? Is that right?

If so, does he have other carers on a daily basis? Do they check the catheter is draining when they are there? If it's not draining do they call the district nurse or GP? Would doing that stop an infection setting in or get him the ABs he needs?

If he's admitted to hospital why do you need to cancel everything and rush there immediately? He's getting treatment, does you being there achieve anything practical?

It's not his fault he's getting ill, it's also not his fault your lives grind to a halt every time he gets ill. It sounds like a complete over reaction. You cancelling a day out and rushing to him in hospital vs you having your day out as planned and going to him afterwards makes no real difference does it?

I will say that care homes aren't a panacea. They are a bit like nurseries and phone you about every little thing. When y father was in a nursing home it took me right back to when my son was at nursery.

But you still have a lot more freedom than you would if you are trying to care for someone yourself.

Practical and financial considerations aside - if that's is even possible.

I think you are bearing an extra burden of guilt and pressure from your DH, constantly expecting your PIL to die. So if its a case of life or death, then you absolutely have to do xyz, cut holiday short, do this or that.

He's put you in a position where its always a cruical emergency and therefore its impossible to refuse.
I know something of this as a grand relative was quite old but we had to do everything the family wanted, every time, because this might be the last time and they were still brisk and spry 25 years later! Your DH may not even realise it but he is continuously guilt tripping you.

Obviously there does come a point where the person really is about to die and of course that is different, but your PIL is still around, although needing extra care.
At the moment the situation is descending into what looks like a crisis mode, something has to give and therefore his care plan is entering a different stage and needs changing. I think you need to talk to a gp/social worker or whoever and look at what PIL's options are realistically, make a practical plan and stick to it and DH has to listen and stop panicking. That's why its good to get others involved as it is quite hard on the emotions.

The hard fact is that he could die at any time, but so could anyone else, for any reason and so I think you are right assessing how your life is going and deciding to carve more of it back for yourself. It sounds horribly cold but you sort of have to say, if he dies he dies, its sad but there's nothing we can do about it, but this is the best, most practical way to help him while he's still here. And that also means building in self care, because his Dad in his prime, wouldn't want you both to sacrifice your health, wellbeing and marriage over this.

For e.g. What about respite care so that you can BOTH have a holiday without worrying? That's what it's for. I know relatives don't like this, but if it keeps you able to cope, I think they have to put up with it.

Your DH needs counseling as he's already behaving like his poor dad could drop off at any moment and that must be such a frightening stressful way to live, always on the cliff edge. But it doesn't mean that he can inject all that anxiety into you and relentlessly make you constantly pull out all the stops just in case - because that puts you in a situation of having complete burn out - and that is what has actually now happened. Remind him that you will have to go through this with your own parents and would he like you putting that kind of pressure on him?
Hope you get through this OP, you sound like a kind, caring person, don't forget to also care for yourself and your DC

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 understand why you keep agreeing to cancel your holiday plans though? Just send DH off to see his dad alone if he feels it's necessary, and you stay behind with the DC. And do the same for days out, or meals, or anything else he keeps trying to cancel. Stop letting him walk all over you and start standing up for yourself.

If he feels it's necessary to see his dad, then he's free to go and do that, but he doesn't get to cancel everyone else's plans too.

Also just to say that it doesn't have to be a care home or nursing home. MIL had advanced dementia and had care at home until a few weeks before she died. She had care right through covid. SIL lived around the corner, I am not sure how practical it would have been if she didn't, as they don't wash bedding or anything like that but I suppose you could employ a cleaner/housekeeper on top. The care was free as MIL didn't have much in the way of liquid assets. The value of the house doesn't count towards at-home care.

Your FIL can pay for a live in carer for a week to enable you to get away and have some fun family time. I’m an only child and have been a carer to my elderly parents for 7 years now. My Dad had an expectation that I would do everything. At one point we had carers going in 3 times a day for my mum and I was going in daily too to prepare their meals! Madness…. carers could have done this too.

I had counselling through my GP which was useful to set boundaries with my dad. The stress/ guilt and severe anxiety can build over a period of time so if you can all get away it can be a real ‘reset’ - a reminder of what life can/should be like.

I’ve just been away for a week, didn’t want to go but the second I got to the airport I felt a weight had been lifted. Parent was fine at home with carer - if anything had happened the carer would have called GP or 111 for help.

I’ve also had a carer in to look after mum if we’ve gone out for a day as a family.

With my Mum I just withdrew and let it all fall to shit. And it did, very quickly. I still feel somewhat guilty about that (she died in 2019) but I just couldn’t cope anymore. Essentially what happened was she was getting 4 care visits a day but they’d clock off at 6/7ish and then she’d be left overnight. She had an anti pressure sore inflatable mattress by that point and it would deflate during the night (because she’d unplug it!) and the alarm would go off and then she would be ringing me to go and sort it out at 3/4/5am. I just turned my phone off in the end - this was you have to understand after a long, difficult time with her being very abusive and me trying to cope with my own health issues and disabled son. In the end Mum rang 999 and was abusive to them on the phone and they also refused to come out. 😳 I know this because trying to be good I rang 999 myself asking them to do a welfare check after seeing all the missed calls I had and they said they’d already spoken to her and she’d sworn at them down the phone and they refused to come out. The next day she got herself stuck in her doorway with her walking frame unable to move in or out after trying to get to her car (which she was unable to drive and hadn’t driven for ages / sorn etc). The first carer for the day found her like that and from there on in they stepped it up and fast tracked her for a nursing home / continuous care assessment etc. She was a complete danger to herself. If I kept going to her every time she called me nothing would have happened.

Xrays You definitely did the right thing for your mum and your family. Sometimes you have to be cruel to be kind.
The guilt is something else! I feel guilty because I only visit twice a week, but I know I can’t do more for my own sanity and mental health. Mums on repeat, I stay around an hour snd she’s told me everything at least half a dozen times I’m ready to scream by then.

💐❤️

The guilt is dreadful isn’t it. But you can only do so much. People who haven’t been through it and don’t know the systems just can’t understand how conflicting it all is.

Exactly. I'm getting abuse from all sides just for having the audacity to say I cannot provide care to a terminally ill, immobile elderly person and work a full time job.

Funny how people criticise you for not doing what they can't or won't.