When your cared-for person won't admit you're their carer

[HelpBehindTheScenes]

There must be other people on this forum who function as unpaid carers, are recognised by their GP as such, but the person they're caring for doesn't see themselves as a cared-for individual?
It can be hard to be the wage-earner AND the housekeeper, to do 95% of the chores, and yet the person benefitting from all this effort declares, "you're not my carer, you're my wife, and that's just what people do for their other halves." So, the efforts don't merit recognition at all. "What,do you want a gold star or something?"
How do other people in a similar position deal with this? My response is generally, "Ah well, this is my life", but there are times when I do feel rather alone with it all!

[Melly1]

Hi Karen,
Life sounds tough, juggling work, caring and running the home.

I’d be inclined to point out that you went into marriage to be a team and that it’s supposed to be a two way arrangement. If your husband is too incapacitated to help (and do his share) then you need help from outside - to make the situation sustainable eg paid carers to meet some of his care needs and/or help around the home.

Have you read this book:
The Selfish Pig's Guide To Caring: How to Cope with the Emotional and Practical Aspects of Caring for Someone
By Hugh Marriott
You might find it helpful.

Melly1

[sunnydisposition]

I think I might have a read of that ..

[Kristie_2104]

Dear HelpBehindTheScenes
Hi im Kristie and i volunteer for Carers UK. I am sorry to hear of your difficult situation it must be hard for you. I hope fellow carers on the forum can help give you advice and if not there is a telephone helpline for Carers UK which i will give to you below.
So welcome to the forum! You are not alone in your caring role and i am sure that many on here will understand exactly how you feel and offer you support. Caring can be very lonely and the pandemic has made caring responsibilities challenging and many carers have been unable to attend social groups etc.
Carers UK are running online weekly meet ups for carers and you can finds the information on how to register at Care For A Cuppa:-https://www.carersuk.org/help-and-advic ... ne-meetups. Then there is another online weekly meet up called Share And Learn:-https://www.carersuk.org/help-and-advic ... e-sessions.
Here is the telephone number for Carers UK is 0808 808 7777. It is open from Monday to Friday between the hours of 9am-6pm and the email address is (advice@carersuk.org).
The advisers on the telephone number provide information and guidance to unpaid carers. This covers:-
-Benefit And Financial Support
-Your Rights As A Carer In The Workplace
-Carers Assessments And How To Get Support In Your Caring Role
-Services Available To Carers And The People You Care For
-How To Complain Effectively And Challenge Decisions
Best Wishes
Kristie

[Charles_2112]

Unfortunately, this happens a lot. I used to find it most often in older married couples, referring to "in sickness and in health", but also most especially in people who had been fine and then suddenly found themselves dependent on someone else: most often, I'm almost ashamed to admit, when it's men - middle aged and upward.

Part of the reason is that by demoting what their loved ones do to support them as part of their wifely duty (or as "children"), it diminishes the impact of what they've lost. One carer I knew was told this sort of thing regularly: her husband had a major disabling incident at the age of 73, before which he played tennis, golf and "never had a day's illness in his life." The shock to his ego was massive. And that's part of the problem. Us men are brought up to be Superman - the provider, the invincible, the indomitable. And when the inevitable happens, we can't cope with it and take it out on our loved ones. Quite a few of the carers I knew couldn't get their husbands out of the house if they had to use walking aids or a wheelchair. They couldn't stand the idea of being seen like that. And in a wheelchair you can't keep up the pretence that you're fine, really.

And, although I've mainly directed my comments about men, I've seen similar situations when women are the cared for. My Mum, who was a carer for 52 years, didn't really recognise the point at which she was needing care and absolutely refused to use her wheelchair - and had several nasty falls as a result. Now at least she uses a frame, but only because she can't even stand without one.

I can only suggest this: when the "goild star" comment comes up, remind your other half that you simply want some acknowledgement of the fact that you do all these things for them - but you don't actually have to. A lot of people do make the choice to walk away, but out of love you have not done so. You're still there. But the "gold star" comments and the attitude that you have to do it don't encourage you to hang around. This is not to be a threat - it's to point out that you've chosen to be there.

And yes: talk about getting help in because doing everything will impact your health, and probably has done. The Helpline is a good start.

[bowlingbun]

I had major surgery, found my husband dead in bed, and then was disabled in a car accident, all within 2 years 2004-2006.
My son had severe learning difficulties and mum was disabled and housebound 6 iles awa.

I couldn't do everything that my husband and I did together and look after son and mum.

They key to survival is accepting that one person cannot do the work of two or more.
Everyone is different, so here are a few things that I did to survive, many at the insistence of my eldest son.
The pretty back garden we had created with loved from a field was flattened - plants given away on Freecycle.
Apple trees removed, borders removed, shrubs removed, vegetable patch, EVERYTHING!
When I had some drainage work done at the back of the house, I had a wider patio built, with pots and a hanging basket tree, a special treat to myself. I hated this but now my sons cut the grass, I can play with my pots. No more weeding kneeling down. I can't kneel now I two knee replacements.
I use a dishwasher, and a tumble dryer - a "green" dryer, more expensive, cheaper to run though.
I don't wear anything that needs ironing apart from special occasions.
Make sure your husband wears easy care things like polo shirts. Lands End are great, if you sign up to their emails, they send details of special offers, currently 70% off in their sale!
Get rid of as much stuff in the house as possible, anything you don't currently need, but don't want to sell can go in Really Useful Boxes in the shed or garage or loft.

Now the really shocking bit.
If he is home all day, then it's HIS job to be housekeeper!
If he is getting disability benefits, they are to go towards keeping house.
If he doesn't want to do house jobs, he can pay someone else.
Peel the veg, put tea in the oven or turn on the slow cooker.
Load the dishwasher, the tumble dryer or washer dryer, fold the washing etc.

If you love him enough to be the sole breadwinner, this is now his part of the partnership, to love you enough to do things to help you!
As he keeps reminding you, if he can't do things, you do them BUT the reverse applies equally!!!

[Pet66]

Hi
My circumstances are different to yours.However, the advice Bowlingbun has been very valuable. My late husband was in a nursing home which left me coping with things that he always did.
Slowly I have sorted, especially the garage which was a danger area! Hubby was a bit of a hoarder,but his onset of dementia made him 10 times worse. It's sorted now, with the very useful boxes BB recommended. Nothing is damaged in them.
I gave lots of things to charity or family. Was very emotional to do that. Still have my dinner service and glasses but I like them. Still have a things that could go but I'm not quite ready. House is much easier to maintain regardless. Hubby did the garden, but now I get pleasure in the better months of doing containers and baskets.
I have a washer and drier & a dishwasher. I don't actually mind ironing.
Really am just posting to say it's worth making life easier for yourself in the long run.

[helena_2006]

I can totally relate to your post. My husband is insistent that he does not need a Carer and is even jealous of my Carer Befriender asking why I get a telephone befriender when he is the one who is ill. (I have suggested he find a befriender through Age Uk or Silverline but no interest).

I order his medication but he says he could do it himself but he has no idea what pills he takes even though I have printed out lists for him. Any medical telephone consultation usually ends up with me having to answer the questions as he is so deaf and really struggles with any kind of accent.

He is in total denial re how much I do and I know he could not cope with the financial aspects partially due to him being very deaf and although he can use a computer, he is struggling so much with email passwords and usernames. He also says that I am 'making it up' when I mentioned that he left the ring on 3 out of the 4 times he cooked recently.

TBH my husband is 82 and I think it is a fear of 'losing control' - maybe a generation thing as I am much younger? . He must realise his short term memory is very bad despite being in total denial. At my Birthday Lunch, a friend asked Eric how he knew Paula (who used to take us to cat shows) he said she was my friend and he had hardly ever spoken to her. When she mentioned the days out at cat shows he looked totally blank.

I have no words of advice but just remember you are doing a wonderful job. Get as much support as you can. I feel very bitter at times too but I do tell myself constantly he is a frightened old man.

[HelpBehindTheScenes]

So nice to hear from you, Helena. We're in a similar position in some ways - there's 21 years between us, and my husband is 84. What you say about being them being frightened old men probably exactly hits the nail on the head. We don't have as much of a memory problem here, but much of the other things you say really resonate.
Can't continue to write now - I'm about to be interrupted! Take care. You are not alone!

I can totally relate to your post. My husband is insistent that he does not need a Carer and is even jealous of my Carer Befriender asking why I get a telephone befriender when he is the one who is ill. (I have suggested he find a befriender through Age Uk or Silverline but no interest).

I order his medication but he says he could do it himself but he has no idea what pills he takes even though I have printed out lists for him. Any medical telephone consultation usually ends up with me having to answer the questions as he is so deaf and really struggles with any kind of accent.

He is in total denial re how much I do and I know he could not cope with the financial aspects partially due to him being very deaf and although he can use a computer, he is struggling so much with email passwords and usernames. He also says that I am 'making it up' when I mentioned that he left the ring on 3 out of the 4 times he cooked recently.

TBH my husband is 82 and I think it is a fear of 'losing control' - maybe a generation thing as I am much younger? . He must realise his short term memory is very bad despite being in total denial. At my Birthday Lunch, a friend asked Eric how he knew Paula (who used to take us to cat shows) he said she was my friend and he had hardly ever spoken to her. When she mentioned the days out at cat shows he looked totally blank.

I have no words of advice but just remember you are doing a wonderful job. Get as much support as you can. I feel very bitter at times too but I do tell myself constantly he is a frightened old man.

[helena_2006]

Stay strong - try and carve a life out for yourself in baby steps. You will get the 84 year old toddler temper tantrums but do it.

Also maybe a Carers befriender might be an option? Safe place to discuss things and your feelings? Please remember you are a person too and you have every rights to some 'quality of life' . You are most certainly not alone and in may ways, our experiences remind me of people trying to care for their parents - it is 'expected' of us. My husband has always been a very domineering controlling man and he is not happy that his little 'drudge' is starting to grow a spine and unsheath her claws.

Hard I know as you sound very caring and compassionate but one thing this Forum taught me is that one cannot be a carer, unless one cares for oneslef.