Should we be resentful about becoming a carer?

Around here agencies now charge £45 an hour for care work. An elderly man is just moving into a care home and will be paying £1600 a week to be looked after.

My heart goes out to Madmeg. 😥. My husband has been in hospital 2 weeks now following a second stroke and they are talking about him coming home early next week. It is what he wants but I have told the staff I don’t feel ready as his balance is off, he has a catheter and he can only walk a few steps with a quadstick in the house. If we go out it’s me pushing him around in a wheelchair which is absolutely exhausting.

Basgetti, can I just say that if your mother has dementia, she’s probably not ‘in denial’ as such - she just can’t remember at any given moment that she can’t do this or that any more.

My DM never really understood that there was anything wrong with her, even when she could not longer even make herself a cup,of tea. In her head of course she could still do everything that she always had,

Apologies I haven't read the whole thread but the title resonated with me.

I looked after my Dad for almost 11 years after my Mum died. I had to eventually give up work as his care needs became greater and he became frailer.

It was hard work, frustrating, isolating, at times depressing, financially challenging, often unpleasant, and there always seemed to be some sort of confrontational situation with the medical profession in general.

I didn't resent my Dad. He & my Mum were the most wonderul parents and I loved them both dearly and I would have done anything for them, just as they did for me.

I did at times resent the situation I found myself in though. My Dad didn't want to be in that situation any more than I. But I did resent having to give up a well paid career, with lots of overseas travel, lots of friends in lots of places only to find that I had to go through all my savings before the government gave me about 60p per hour for a very full time + demanding job. And paid a small amount towards my mortgage.

I had many plans for my retirement, but by the time my Dad passed away, I was too tired, too old and too broke to do anything.

It is appalling in my opinion that the most allowance given for an elderly person with dementia,a stroke etc etc is £120 per week. Carers are around £40 per hour and much more at night. Yet the welfare bill in benefits is massive and growing at a frightening rate. 1 in 3 cars are now part of the motobility system! I could give examples of what you can receive if you have adhd and similar. Yet the elderly who have worked for 60 plus years and paid their taxes get zero for help. No body can help being old and getting dementia etc but you are left to get on with it. I know as that’s exactly what I’m doing right now and have for the last 3 years. Poor Madmeg, life has treated you very badly I feel. Car homes are 7 k a month at least around here and you get nothing unless you have £23k or less. On the radio the other day it was announced that people with children earning over £120 k a year are getting pip or universal credit etc. it is appalling that the incapacitated elderly are left to it.

Madmeg, your situation sounds dreadful. I could be wrong, but my understanding is that nobody can be forced to care for someone else, even if they live in the same house. If you refuse carers will be found, and his care will be their responsibility. They should be coming in three times a day.

Also, if your savings are in separate names you don’t have to spend any of yours, and if in joint names you are deemed to own 50%. I think you need to take advice about how to protect yourself financially. Again, you will need to refuse to spend your money, as the LA will pressurise you to contribute, but you have to consider your own life when your husband has gone. You deserve to have some spending money left, so that you can enjoy what time you have left.

If your husband goes into a nursing home you won’t have to sell the house and he will only have to pay fees until his share of the savings falls below the threshold. If he needs medical care they will be covered.

Someone more knowledgeable than I am will be able to confirm or deny all of that, but why not call Age UK and ask their advice?

We still have, in the 21st Century, the Victorian tradition of reaching for The Dutiful Daughter when the caring question crops up. Or Dutiful Daughter-in-Law. Or Dutiful Wife.

And it seems this is an unspoken, yet cast iron, expectation (always eternally has been) that being of the female gender imposes this rule upon one, and questioning this state of affairs makes one the object of much silent finger-wagging.

Why do the men in the family get a free pass? Because, let's face it, when politicians and moral commentators talk about 'times past when families shouldered caring responsibilities', it routinely fell to women. No if's or but's - it was, and is, a women's Duty.

How many women went to their graves through sheer and unrelenting exhaustion? And still do.

My DH has been struggling with mobility for several years. He has been referred for physio 5 times and in each case did NONE of the exercises at home so they discharged him as politely as possible, as a useless case. He had a fall before Christmas as we were setting off on a World Cruise, which he insisted would be fine but turned out to be an absolute nightmare as he fell in the cabin in the first week and despite having done no physical damage he became frightened of falling and I spent the entire three months having to get all his meals and snacks, get him in and out of bed, dress him, toilet him and so on. We were not able to go on any shore trips and he only managed one visit to the theatre which took an hour each way to the theatre from our cabin.

He also became doubly incontinent though that is improving slightly but he still wears nappies which need changing regularly, with regular washing of him and his clothes.

He also refuses to drink enough water so is often feeling dizzy and he struggles to regulate body temperature as a result.

I basically no longer have any life of my own, being unable to leave him for more than a quick whizz to Tesco.

Several people have talked about carers visiting - yes, we had them for 3 weeks paid for by "someone" (i am dizzy with which body organises what) but we now have to pay £40 per visit (two carers to lift/supervise his exercises, for half an hour) four times a day, so £160 a day, over £1,100 a week. Of course they are not there when he needs the commode and can no longer clean himself after a bowel movement - they too are a nightmare as he often says he needs to "go", so I go through the rigmarole of getting his lower garments off, and onto the commode, only for him to say he can't do it so I dress him again and wheel him back to his seat where, ten minutes later he decided it is now urgent!

Meanwhile he sits watching the tv, not bothering with any conversation, not shaving, not wanting his hair washed (it is thick with dandruff). I try to feed him nutritious meals but he leaves the veg and refuses to drink water so that adds to his constipation problems.

Do I do it out of love? Not a chance, love died the night he moved out of our bed into the spare room, abt 40 years ago, and never came back, and it declined even more the year I had radiotherapy for oral cancer and could not eat normal food - he failed to get me ANY alternative meals, just Fortisips drinks and the occasional tin of mandarin oranges, and although the pain was bearable I was on heavy pain relief and simply not well enough to prepare my own meals.

I see over £50k disappearing this year alone for these carers to support a man who has done nothing at all to improve his body so he is getting worse and worse. And Yes, I claim AA for him for both day and night. It is around £120 a week - we are spending £160 A DAY for the carers for two hours only. Care homes in our area are upwards of £1,500 a week so our savings would soon be gone and most decent care homes would not have him if they only got the basic rate that the council will pay them for a place for him, so he would find himself in one or other of the dreadful homes I viewed a few years ago for my dear mum with dementia.

What I do for him is purely out of duty, not love, and I get no thanks for any of it.

Since returning home he fell again (not badly) but it meant he became afraid of the stairs so he now has a hospital bed in the lounge, along with a wheelchair and commode as he can't get into the loo and can't stand up to wee. He therefore wears full nappies and can barely walk. I basically do everything for him. He can't feed himself without dropping food over himself and the floor, he can't get his legs in and out of bed or stand without support, and even with a rollator cannot take more than a few steps very, very, very slowly. Again, the physio has given him exercises to do and he doesn't do them, saying he is too tired or I am nagging him. The physio is talking about installing a bed hoist if he doesn't do the exercises.

I am getting to the stage where I feel like walking away with all our spare cash and letting the authorities sort him out. Either that or taking a cricket bat to him. I am not sure that I am joking!

It's s certainly no life for me and I resent that fact that a lot of this would have not happened had he done those exercises 15 years ago.

Yes mae13 I know two.
One was driven nearly frantic with the stress.

Sadly, but with some relief, his once-lovely mum, who had dementia has now died.
In this case he was an "only" child.

One thing that frustrates me is that if I were working in a care home doing the things I do for D H, (toileting, dressing and undressing,sorting out meds, coping with hallucinations etc.) I would have had some training. As a full time carer, I have had none. Sometimes just taking his t shirt off is a real struggle. People suggest carers but I can't see what they would do that I'm not. My sleep is so precious and I don't want to be woken (if I'm lucky enough to be asleep) to let in an early morning carer. DH is usually up early, having been in and out of bed all night so I never know what time he would need help. I could imagine carers spending their time waiting for him to wake (he sleeps a lot on the daytime) and I would still be doing the caring. If people came to 'give me a break', I would just want to potter about at home and I couldn't do that with strangers in the house. (Sorry, having a bit of a rant, I'll feel better tomorrow, it's been a tricky day.)

Warbler

When do you become a carer.......I'm sliding into it gently. After having to change the urine soaked bed for the second time this week and lug everything to the laundrette yet again, I am beginning to think.....am I the carer? We aren't married and really I wouldn't do any less for him, but it is a struggle.

Please, please make sure that you are legally financially secure should he pre-decease you.
So sorry for the situation you are in.

JaneJudge

Primrose53

Usedtobeblonde

I don’t think older people who are getting a SP can claim carers allowance, I may be wrong.

Correct. If you receive state pension you cannot claim Carer’s Allowance.

you used to be able to claim attendance allowance though but I don't know if that is still the case

Attendance Allowance is for the caree nor the carer. My husband gets that.

Correction the person affected should apply for AA but if they can’t, and my DH falls into this category, a relative/carer can apply for it for them.

JaneJudge you can claim attendance allowance which is not means tested. I got the higher rate for my DH. Would advise any carers to apply for this.

I have a young family member who has become fully incapacitated. The workload on their young spouse is unimaginable. After a year the spouse has only just gone back to work. The care that has fallen to everyone around us is intense and overwhelming and that’s with 24hr care.

I happily help with light duties, as the injured wouldn’t want more from me, however the resistance to putting this person in care from family is intense, and they are seemingly happy to let the young spouse drown.

Caring is the hardest job at that level. I wouldn’t blame anyone for complaining

Primrose53

Usedtobeblonde

I don’t think older people who are getting a SP can claim carers allowance, I may be wrong.

Correct. If you receive state pension you cannot claim Carer’s Allowance.

you used to be able to claim attendance allowance though but I don't know if that is still the case

I would never resent being my husband's carer when he had cancer, but I do sometimes look back and think that was ten years of my retirement gone. Tens years that I hardly remember apart from the constant trips to hospital. On the other hand it was a lot better than not having him at all for that ten years.

I don’t resent caring for my husband after he became disabled following a massive stroke, but I do resent how isolating it can be and how alone a carer can feel, as well as shaking my fist at the fates for letting this happen when we are both only in our mid seventies. I thought we had more time to enjoy together, to go traveling again, or to the theatre or cinema, it all just seems so unfair sometimes. But then I heard from a friend that her daughter in her early forties has breast cancer and it has spread to the lymph nodes, she has three small children. Such tragic stories make me get things in perspective. At least we had a good life for many years, and we have each other, it may not be as good but it is as good as it gets in the circumstances.

Usedtobeblonde

I don’t think older people who are getting a SP can claim carers allowance, I may be wrong.

Correct. If you receive state pension you cannot claim Carer’s Allowance.

In tears, not on tears!

GranniesUnite and Usedtobeblonde, your lovely supportive comments have me on tears (the good kind). Gransnetters truly are best, thank you both so much xx

AnotherBirdLady I understand the point you are making but not all Children are able to care for their Parents. I have friends whose two sons live in Australia and another whose Son lives in America. So they wont be on hand to care to do shopping and cook meals. They are in exactly the same position as people without Children with nobody nearby to do things for them. This is when we need to arrange alternatives which will inevitably need to be paid for.

I don’t think older people who are getting a SP can claim carers allowance, I may be wrong.

Of course we “shouldn’t” feel resentful, but I know from experience how easy it is to sometimes feel a little bitter,

One of the side effects of people living longer is that carers are also older and often not 100% fit themselves.
It concerns me that several posters have said they don't consider themselves to be carers when they obviously are. I hope this doesn't mean they have neglected to claim attendance and carers' allowances

Good points CariadAgain if you haven’t already Google AWOC Ageing Without Children.