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Original poster

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

113 replies

Roastingcoffee · 30/08/2023 07:43

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?

OP posts:
Justgonefishing · 30/08/2023 10:02

Bless you OP for all you have done...its the reality of life for many many carers around the country and the NHS and social care would ground to a halt without all that the unpaid/informal carers do for their family and friends. Many do it out of love, many out of necessity or loyalty but ultimately it is down to you and your husband to talk this through...have you thought about going for joint counselling? he may need to here what your needs are as at the moment your FIL's needs are driving the situation. there are other options but you are right ,he may have too much guilt to be able to change the situation at the moment.

Immoralplant · 30/08/2023 10:13

What is your father-in-law’s quality of life like?
For some older people repeated courses of antibiotics and hospital admissions to treat infections are not really a kindness, and are just prolonging the process of dying.

While also increasing the risks to the rest of us of antibiotic resistance.

Original poster
Roastingcoffee · 30/08/2023 10:13

To all those talking about care - pil sold everything to pay for care, but the system is on its knees and even with £1m to play with, after 10 years it is nearly all gone and fil still cannot afford the care he needs unless we let him sit in a bed all day bored out of his skull. It is not a matter of just finding a care home or contacting SS! If only …

He has a supra pubic catheter. A district nurse visits once a week.

all this happened gradually - I didn’t give up a high flying career to care for MIL, it just became increasingly impossible to work and still manage everything she needed. So I won’t part time, then more part time. She moved into a home but all they did was keep her alive. Her quality of life was horrendous. Dh was so cut up about it. It was like torture to watch him go through hell with worry.

so I realise I have made this situation for myself. But how the hell do I go back? I’m no longer a thirty something career woman. I’m a middle aged woman with a long career gap and dc to look after. If I give up all the responsibility for FIL I still have sole responsibility for 2 dc as dh will be completely preoccupied

OP posts:

Interested in this thread?

Then you might like threads about these subjects:

Care homes Dementia & alzheimer's
Original poster
Roastingcoffee · 30/08/2023 10:15

Thanks everyone for all the kind comments and I’m sorry for not responding individually

OP posts:
MichelleScarn · 30/08/2023 10:24

cptartapp · 30/08/2023 09:04

Your PIL let you give up work to be MIL carer indefinitely? They really let you do that?! And now FIL is happy for you both to prioritise him at the end of his life over you and your DC in the prime of yours. Opportunities you will never get back.
Wow. Dreadful parenting. Did they pay into a pension for you? Subsidise your losses?

And if the only reason he is kept at home is you propping up the situation then you need to step away. Social services are relying on you to fill the gaps and keep him out of a care home and you've fallen for it. You will regret this.

Exactly, @Roastingcoffee were in laws demanding and dictatorial prior in their lives?
I cannot believe how suppressed you've been by them? Why couldn't you go back to work when mil went to 24 hr Care? Who decided you had to go and see her everyday when she was cared for there?

ShakiraBahera · 30/08/2023 10:26

Roastingcoffee · 30/08/2023 10:13

To all those talking about care - pil sold everything to pay for care, but the system is on its knees and even with £1m to play with, after 10 years it is nearly all gone and fil still cannot afford the care he needs unless we let him sit in a bed all day bored out of his skull. It is not a matter of just finding a care home or contacting SS! If only …

He has a supra pubic catheter. A district nurse visits once a week.

all this happened gradually - I didn’t give up a high flying career to care for MIL, it just became increasingly impossible to work and still manage everything she needed. So I won’t part time, then more part time. She moved into a home but all they did was keep her alive. Her quality of life was horrendous. Dh was so cut up about it. It was like torture to watch him go through hell with worry.

so I realise I have made this situation for myself. But how the hell do I go back? I’m no longer a thirty something career woman. I’m a middle aged woman with a long career gap and dc to look after. If I give up all the responsibility for FIL I still have sole responsibility for 2 dc as dh will be completely preoccupied

But what about your quality of life?

I don't mean to sound callous but if your MIL was in a care home with dementia, she likely didn't even know that you were sitting there day in day out.

FIL is going to die at some point. DH needs to accept that and feel comfortable with all that you have already sacrificed as a family.

Constantly cancelling holidays and other things that are important to your family is not a solution.

Scaryghost · 30/08/2023 10:29

My ddad is disabled and has carers 4 times a day. I get ‘emergency calls’ from them. The last asking if I could visit that afternoon as he was ‘low in mood’. Nope sorry I was 160 miles from home. Shit happens, but I have my own family, dc, home and career that also need my attention. Was he taking his anti depressants? When was his last meds review? Is this suddenly this afternoon or on going? Were my questions to the care team. Don’t know was there reply. What else can you do?

rookiemere · 30/08/2023 10:30

I do believe we prolong people's lives beyond what is endurable for them and indeed ourselves these days. I want to be like my uncle who died of a heart attack walking up a hill on holiday, but you don't get to pick these things.

You talk about FIL and MILs quality of life, but what about yours ? Yes I imagine life in a care home may not be what FIL wants for himself, or indeed anyone else wants for him, but the alternative is severely limiting quality of life for a younger family, and it's not as if he's really having a wonderful time at home.

I know it's not as easy as this in real life, and I'm dreading getting to that decision point, primarily because I am not a very self sacrificial type of person, but do feel guilty and want to do the right thing for my parents.

They did no hands on care for their own parents for various reasons, but have been good parents and grandparents. I'd provide a high level of care for short term emergencies but I wouldn't be giving up my pension rights for anyone.

Xrays · 30/08/2023 10:33

It’s hard but the more you do, the more others will expect you to do, including the care services / healthcare providers etc.

My mum had complex health needs - copd, schizophrenia (which was actually largely under control until the end of her life), adrenal insufficiency and then bowel cancer. I have complex health issues myself and a disabled son. She would be in and out of hospital and everyone would expect me - her only child and only relative- to drop everything and care for her, pick up the pieces. I just had to flatly refuse
in the end. We had a difficult relationship but I would imagine that would be hard to do for someone someone loved and cared for. (We did live together till I was 32 so had a difficult complicated relationship).

It was only when I basically refused to go and pick her up or care for her that people actually stepped in. She had a continuing healthcare assessment and was given initially 4 visits a day by healthcare providers and then was moved into a full time nursing home (she owned her own home but had no funds available as such).

No one will step in until you step back.

ShellySarah · 30/08/2023 10:36

Why is he terrified his dad will die. Surely he knows death is inevitable for everyone?

Clymene · 30/08/2023 10:40

So your and your children's quality of life has been utterly ruined providing 24/7 care to a woman who may not have even known you were there and now a man who doesn't want to go to a care home because he'd be bored. There is care. It may not be the care he'd like but it's available.

Your children will never get back their childhood, never. What you and your husband has taught them is that they and you are much less important than their dad's elderly parents. It's a pretty terrible lesson to grow up with.

Candleabra · 30/08/2023 10:43

It’s hard but the more you do, the more others will expect you to do, including the care services / healthcare providers etc.

Im afraid this is true. I did a lot for my parents - a lot - but I learned never to say that to anyone official. As soon as social services know there is an adult relative (particularly a woman) nearby, they will back right off and expect you to do it.

PinkCherryBlossoms · 30/08/2023 10:43

ShellySarah · 30/08/2023 10:36

Why is he terrified his dad will die. Surely he knows death is inevitable for everyone?

That's something that would really worry me. How he's going to cope when the inevitable does happen.

ShellySarah · 30/08/2023 10:49

Candleabra · 30/08/2023 10:43

It’s hard but the more you do, the more others will expect you to do, including the care services / healthcare providers etc.

Im afraid this is true. I did a lot for my parents - a lot - but I learned never to say that to anyone official. As soon as social services know there is an adult relative (particularly a woman) nearby, they will back right off and expect you to do it.

I've found that. My poor mum is terminally ill and immobile. They are trying to discharge her home because it is her wish when they know its only me to pick up the pieces. A professional with long working hours.

Ginmonkeyagain · 30/08/2023 10:51

I mean your FiL IS going to die and probably sooner rather than later by the sound of things. You cannot continue cancel holidays and activities everytime he is ill on the off chance he might die.

What is your DH scared of - not being there to see him at the end? FiL dying alone?

My mum died suddenly during an operation when I was 16 - none of us got the chance to say goodbye or see her - it was rubbish but nearly 30 years later that doesn't matter as I remember all the time I was there with her, not the one time, through no fault of my own, I wasn't.

I agree with what others have said - sometimes I think we live too long.

Candleabra · 30/08/2023 10:59

@ShellySarah so sorry about your mum.
The emotional blackmail is horrendous. Stand firm. As if you didn’t have enough to cope with though.

ShellySarah · 30/08/2023 11:09

Candleabra · 30/08/2023 10:59

@ShellySarah so sorry about your mum.
The emotional blackmail is horrendous. Stand firm. As if you didn’t have enough to cope with though.

Thank you.

From all sides, I agree. Guilt tripping from my mum, from my sister (who won't lift a finger) and the hospital staff who just want her out.

I can't be there for a bed bound terminally ill relative who is non compliant with medication. I just can't.

I can see how the OP got drawn into it.

If I was the OP every time there's an emergency I'd say off you go then ... his son can sort him out.

user1469908434 · 30/08/2023 11:11

Years ago, it was normal for ‘the womenfolk’ to look after the elderly. But, they didn’t live with ailments for decades, you got old, then ill, then died. Now, we get old, ill and drag on for years.
Your FIL might die, and you move straight on to your own parents becoming frail. Is your DH going to be as keen on you prioritising their care when the time comes?
Set some boundaries. Days out and holidays shouldn’t be compromised. Your children need to be your priority let alone giving yourself some enjoyment of life!
If I was you, I’d down tools and let DH deal with it. Bet FIL would be in a care home within weeks!

enchantedsquirrelwood · 30/08/2023 11:12

I don't understand why your in-laws have come before your children.

And this could go on for years. That's the thing about elder care. People use emotional blackmail and say "well they looked after you". Yes they did, but a child needs less and less care as they get older, it is a finite time, and parents choose to have kids.

Some level of elder care can be required for decades. Therefore you have to put boundaries in place and make sure you don't "punish" your children for having sick and/or very elderly grandparents. Or indeed your spouse. It's not your fault your DH is an only child. It's not his fault either, and he should have put boundaries in place with his mother, never mind now.

enchantedsquirrelwood · 30/08/2023 11:13

Years ago, it was normal for ‘the womenfolk’ to look after the elderly. But, they didn’t live with ailments for decades, you got old, then ill, then died. Now, we get old, ill and drag on for years

yes, someone "elderly" probably died at 70. Now they might be increasingly frail from 70 onwards, but live until they are 90. That is a long time to expect people to make sacrifices.

mycoffeecup · 30/08/2023 11:15

Leave this to your DH to organise 100%. When he has to do the work, give it a month and he'll have professional carers in.

Mojodojocasahaus · 30/08/2023 11:23

Why are they putting him on repeated antibiotics and prolonging his agony? Have you got a DNR in place? What are the arrangements for his care? Medication can be refused if it’s doing more harm than good

PinkCherryBlossoms · 30/08/2023 11:26

ShellySarah · 30/08/2023 11:09

Thank you.

From all sides, I agree. Guilt tripping from my mum, from my sister (who won't lift a finger) and the hospital staff who just want her out.

I can't be there for a bed bound terminally ill relative who is non compliant with medication. I just can't.

I can see how the OP got drawn into it.

If I was the OP every time there's an emergency I'd say off you go then ... his son can sort him out.

Show quote history

It reads like repeated erosion of people's boundaries. So common in this situation, especially when the people concerned are middle aged women.

Paq · 30/08/2023 11:33

Honestly, 40s is still young enough to rebuild your career. Your DH has imposed on your good will and it's had a massively detrimental impact on you and your children. Take them away on holiday yourself! Pursue your dream career! You married your DH, not his parents.

If I was your MIL/FIL I would not have expected you to care for me. Ditto your DPs.

emmylousings · 30/08/2023 11:36

Roastingcoffee · 30/08/2023 08:38

In terms of care - fil is self funding. But his money is dwindling. So not enough money to pay for a care home (they need to see evidence of 2 years funds) but too much money for the local authority to help.

the care system is fucked - he has Carers visiting but but it’s not enough to keep him safe let alone ensure any quality of life. That is a fact of our care system and not just us being martyrs

Edited

OP you are so right. This really worries me. I have elderly parents and assume that I will end up as their carer and have to give up work. By the time that's done I'll be too old to get back into work. This is a massive issue for women, specifically..How are we supposed to have meaningful and financially stable working lives when we have to stop to care for kids and then stop again later to care for parents??! Women will NEVER get parity at work while its like this.
Why isn't it a bigger issue politically? Because it mainly affects women.