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AIBU?

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Original poster

To not have realised that this is what I signed up for?

132 replies

BogstandardBelle · 01/07/2018 23:10

Between DH and I we have a lot of friends and family where one is becoming the carer for the other. eg.

DMIL has recently been diagnosed with Parkinson’s and osteoporosis. DFIL now has to do everything physical for her, and it’s not going to get Easier. She can no longer cook, wash herself, she can barely get up out of her chair. Mentally, she’s okay but physically she is severely restricted.

My uncle, who’s 76, has viral encephalitis and is goingto be left with major brain damage and personality changes as a result. My aunt is expected to bring him home and care for him - he’s not even himself anymore. The person she loved and married and lived with for 45+ years is essentially gone. Yet his body still needs fed, watered, kept clean and clothed.

My boss at work, late 60s, her husband has just been diagnosed with Parkinson’s and frontal lobe degeneration, so basically dementia. He’s still functioning, but it’s only a matter of time before he requires a lot more care.

I know it says in the marriage vows «in sickness and in health». Is this what it means? To end up being a carer? Dealing with toileting and feeding and aggression and... everything? I don’t know if I can do this.

OP posts:
ExConstance · 02/07/2018 10:23

There is nothing I would want less than having my DH care for me. It would end the relationship we have and substitute a relationship I don't want. I want him to be free to do what he wants, to have a relationship with someone who can do things with him. If I developed one of the nasty diseases I hope I would be brave enough to go to Dignitas before my dependency got too substantial.

If it was the other way round and he was the one with the illness I'd hopefully be able to afford carers and then see how we could live happily together if possible, though I think with anything very debilitating or terminal he would feel the same way as me.

"In sickness and in health" is a bit of an insurance policy really, not an indication of love. You are taking a bet ( not 50/50 because you might both end up needing care) on having someone you love having a wretched life to care for you, I wouldn't inflict that role on my DH under any circumstances.

Spaghettijumper · 02/07/2018 10:27

A person is still worth something and still valuable even if they are totally incapacitated. I didn't marry my husband so he could do things with me, I married him because I love him and I want to support him and for him to support me no matter happens. If I'm ill I will expect him to carry me and if he is ill I will carry him. What's the bloody point in living at all if you have so little value that once you're no longer perfect you're a 'burden'?? Fuck me what a cynical weighing up of life.

Tiddlywinks63 · 02/07/2018 10:30

Having just found out I have very severe heart problems my H has ignored the fact I'm probably going to die much sooner than later.
We've been married more than 40 years.
Ok, I'll face this on my own, he's clearly not going to be any help.
It's shit. It hurts.

dangermouseisace · 02/07/2018 10:36

Those saying caring IS what you’ve signed up for.

Yes, I’ve seen people do 100% of the caring out of a sense of duty. But caring goes on for years, and people get worn down, depressed, resentful....then they feel guilty about feeling resentful when they “should” be happily and lovingly tending to their partners/mothers every need. “But they looked after me/my husband would do the same for me” ends up turning into “my mum/husband would be doing it more willingly than me, and I’m a bad person for not coping”. They end up cut off from social networks, and if that person they are caring for dies or goes into a home that person more often than not has already lost their social networks, their job, and their role in life. It’s not unusual for people to end up suicidal at this point.

Far better to have a balance where the carer is not solely responsible for everything. I’ve seen couples or families where personal care tasks have been outsourced and the feedback has been that they feel like they’ve got their previous roles/family dynamic back a bit. So husband/wife rather than carer/cared for person.

Yes social services will try and get family to do tasks- they have to ask as bosses will request this. But ”no, I can’t do that” is a valid reply.

dangermouseisace · 02/07/2018 10:38

tiddlywinks Flowers

Is your husband just not wanting to face reality, or is he being a tosser?

Lalliella · 02/07/2018 10:42

I don’t think people should necessarily be negative about care homes, or feel guilty if they put their loved one into one. My DF went into a home and it was honestly the best thing that could have happened for everyone. My DM visited him every day and took him out to the park in his wheelchair, so they were still able to have a nice time together, and he got excellent care in the home, much better than she could have done as she is elderly herself and wasn’t able to lift him. The home was like a hotel, there were activities and company for him. We wished we’d got him living there earlier. Also when he was dying, the home let my mum move into his room with him free of charge to be with him at the end and they dealt with all the end of live care and practicalities. It was a lovely death.

CaledonianQueen · 02/07/2018 10:44

Exactly what I was trying to say in the last page Spaghetti!

Sending strength Tiddlywinks Flowers

MiddleMoffat · 02/07/2018 10:50

I don't love my DP enough to do this either. I'd be guilted into it as he is my children's father . He does nothing to look after his health, won't sort out his health insurance. He has never looked out for me or looked after me. Trying to find the strength and resources to leave.

Missillusioned · 02/07/2018 10:52

The flip side of being a married couple is that you should have the safety net of each other to a certain extent though.

I am a single parent, working full time. My widowed mother is in her late 70s and is starting to have health problems. I am an only child.

I am starting to provide some support to my mum, but have absolutely no back up if something happens to me. I am the only driver in the family in an area where public transport is poor.

If I so much as suffer a broken ankle the whole situation for me, my mum and my kids falls apart. The thought terrifies me.

PavlovianLunge · 02/07/2018 10:56

Am I the only one wondering where the OP is now. (And being suspicious of her/his motives?)

ExConstance · 02/07/2018 10:58

The point is we are all different. There was the case of the woman of 50 who was held by the court of protection to be entitled to refuse dialysis because a life without "sparkle" was not worth living to her
Other cases where an eminent academic of 104 ended his life because he felt he had lived too long and had no pleasure left in life and a young man in his 20's who went to Dignitas following a serious rugby injury that left him in a wheelchair. It is not selfish not to want your DH or DW to care for you, it is very wrong for partners to be emotionally blackmailed into doing so by those whose personal inclinations to care are forced as a mandate on to everyone else.
I know that I would not want my DH to care for me and I know he feels much the same as me.
I work in care and over the years I've seen what this role does to people. I've also seen husbands care for their wives until all their energy has gone and left them with back injuries or totally worn out only to die themselves soon afterwards. Total self sacrifice may be what some people are happy with, but please remember this is not the life for some or possibly most of us.

ohreallyohreallyoh · 02/07/2018 10:59

oh Missillusioned, I have the exact same circumstances except we are a few years further along and it is a nightmare. My mum is currently in hospital but the only way I got her there was by threatening abandonment. She will not come out to her own home. I am going to have to find her 24 hour care and bang goes the inheritance. Whilst your mum is in a fit state to deal with it, please, please, please make sure you have done any old age planning and fixed it in legal stone because goodness me, when dementia happens, it can happen fast. Keep smiling (I am struggling to do so today).

Clandestino · 02/07/2018 11:04

Yes, that's what it means. I have a chronic disease which can flare up and get very bad over the time and should I become a burden for my family, I will make 100% sure I will be able to leave this life before it happens.

AndNoneForGretchenWieners · 02/07/2018 11:07

I am DH's carer, but I struggle with that word. It implies a choice, whereas I am his wife and it's what you do for your other half. I love him and know he would do the same for me if needed, but it is hard to adjust to the role of carer.

hendricksy · 02/07/2018 11:10

Are homes not an option for your relatives though ? I won't care for my mum and she knows this . She has enough money to pay and will do but surely if you have less than the threshold then care is funded ?
I have a son with sn and will be caring for him . I don't know why so many people take on the care when it's not necessary .

Missillusioned · 02/07/2018 11:16

ohreally what sort of old age planning do you mean? I am only just starting to think about this. Mum is ok mentally but has physical health conditions that are starting to cause issues.

She is nowhere near bad enough at present to go into a home, but does need help with some things - ranging from household tasks to collection from hospital appointments.

She only has a state pension as income, but does own her own home and has some savings. Because of these savings she is intelligible for pension credit or other benefits

What sort of things should we be thinking about?

stayathomer · 02/07/2018 11:20

If I you thought about everything too much you wouldn't be able to handle it, but if you just let life go on, and try to take the good with the bad, it's bearable (what I've done anyway sorry of it sounds patronising). And remember when you're going through health stuff you just keep pushing through, minute to minute, hour to hour, and try not to get booted down with the largeness of it. You CAN deal with it, and you do because you love them, and they'd do it for you. And this sounds weird but in the horrifically bad times sometimes something good happens to keep you going. Take care

stayathomer · 02/07/2018 11:23

Am I the only one wondering where the OP is now. (And being suspicious of her/his motives? )

Yes. Yes I hope you are!!!

Snowysky20009 · 02/07/2018 11:24

hendricksy unfortunately there aren't always the care facilities available to take a service user. They may have 2 spare beds, but the beds not suitable if a person requires high levels of support. There may not be the medical beds available in care homes. It's not as easy as it sounds. I know of service users with learning disabilities being 250/300 miles from home- because there is nowhere near suitable to take them. It's sad but it's a fact of life.

MatildaTheCat · 02/07/2018 11:25

hendricksy it’s just not that simple. Many state run care homes are very poor indeed. As are some private ones but as a ‘buyer’ of the care you have more choice. My FIL has literally just gone into a nursing home at a cost of £1800 per week. Most cannot fund that. It’s ok but not wonderful.

Some people are better careers than others. End of. Some will give up their own health and happiness to slave 24/7 for their loved ones. Others cannot seem to do it at all.

My FIL, mentioned above, couldn’t tolerate carers in the house. His DW went into a similarly expensive home a long time before it was absolutely necessary because he just couldn’t cope with her care needs or the care givers. It was very sad. Ironically he hated carers for himself and for many months now we, his family have been run ragged and worried sick by his demands for care and attention.

So caring can come in many forms. My DM now cares for DF who has dementia and I can only support from afar but she realvalues calls and messages. My brothers seem unable to even do that. Complicated.

Scoopofchaff · 02/07/2018 11:27

Great post from CaledonianQueen

PinkHeart5914 · 02/07/2018 11:30

Of course it’s what sickness and health means Confused

Obviously people get ill and yes part of a loving marriage is caring for that person, I mean what else would you do say fuck you to the man/woman you love and leave?

unicornfarts · 02/07/2018 11:35

of course it's what you signed up for. What is this life if we don't care for each other?

Wellthisunexpected · 02/07/2018 11:37

Whilst yes, it is what "in sickness and in health" means it doesn't mean you have to do it all. In this day and age there are community carers who will do most of this, and then if that cannot sustain someone there are care homes. I don't expect DH to be doing those things for me, nor does he expect me to do them for him. We both intend to get as much support for the other as possible.

MoonsAndJunes · 02/07/2018 11:38
Hmm Seriously OP, what did you think the vows meant?

To have and to hold
In sickness and in health
For richer for poorer
For better for worse

Kind of covers everything I think...