People not "getting the carers role"

Perhaps they feel you need a break.

I’m sure you would be entitled to some respite if your husband would be willing to go in to residential care for a few days.

Sago

Perhaps they feel you need a break.

I’m sure you would be entitled to some respite if your husband would be willing to go in to residential care for a few days.

I'm afraid that's an example of "not getting it".

62Granny

My DH had stroke 9 years ago his disability is getting worse as he gets older, he isn't independently mobile any more. I have a group of friends who I meet regularly usually for coffee but occasionally lunch. One of the group just doesn't get that I am unable to meet up for long periods 2.5 to 3 hours maximum that includes my travel time. She constantly suggests days out or sometimes weekends away, or that we go places that would take longer than this . Every time I say that doesn't work for me but please go and enjoy I get a pathetic look and "oh I forgot" . Not sure what I can say , except smile and his I don't think she will change.

My DH had a stroke 2 years ago and his mobility isn’t good but it is the cognitive impairment that makes it hard to leave him for long. I do try to get out and have one good friend who understands my situation to a point, but as you say she will sometimes suggest we go to the theatre or cinema together, and I could ask my DD to sit with her dad, or a good neighbour who has been a saviour on occasion, but after a hard day caring for my DH it can be exhausting to make this effort, and I worry the whole time I am out. Sometimes I just want to curl up with a book or watch a relaxing wildlife documentary. Caring for a loved one is stressful and emotionally and physically tiring. Your friend is trying to be helpful I’m sure but you just need to say that meeting up for a coffee or lunch and a chat ‘is’ the break you need, anything more is not doable. I sometimes think people just don’t get that we know we have to try to look after ourselves and do things we like, we are not dim witted, but doing the kind of things we could do before is now not possible.
I wish you well with this 💐

Many don't understand the full picture of a caring role. Unless you have experienced it, it can be hard to comprehend.
I'd sort of be tempted to respond with 'No, I can see you don't get it'. Hopefully, if they truly want to understand they will probe a little further. As for the pathetic look you received, it could be interpreted as a little condescending. I think she is likely to have some personal issues.
A good friend might ask how they can help to arrange a day's break for you.
But yes Granny62 a carer's role can be a complex one and certainly affects one's own stamina, getting a bit of me time and rest is essential but not always possible. Also it depends on whether you have a support network too.

I will add that I care for my housebound sister.
She rather thinks she lives in Downtown Abbey! Upstairs of course and me downstairs. So like Fallingstar, by the time I get home I only have the capacity to rest.

butterandjam

Sago

Perhaps they feel you need a break.

I’m sure you would be entitled to some respite if your husband would be willing to go in to residential care for a few days.

I'm afraid that's an example of "not getting it".

I think that’s for the OP to decide.

10 years ago I was heavily involved with caring for my father and although not living with him I needed to be close at hand all the time.
For my 60th birthday, friends clubbed together and got me RHS membership - "so you can go and visit all the gardens". I managed to accept graciously but it just made me realise they hadn't got a clue what my life was like. By the time the membership ended I hadn't visited a single garden.

I paid someone to look after my late OH so I could go out. I kept going to two choirs throughout his illness. It was an investment for both of us to make sure I could carry on looking after him as long as possible.
Preserving your own sanity is paramount.

My Dh had a stroke 18 months ago and his mobility is very bad.
I worry if I go out that he falls. He has a phone and an alarm bracelet so all things are covered.
Now and then I go out for the day, coach trip or Into london.
I have a lot of support with family/friends willing to pop in and sit with him, but he makes such a fuss and sends people away.,

I’ve explained to him that if nobody comes in, I can’t go out as I would worry the whole time.

Thankfully my OH understood the need for me to go out and to be reassured that he was OK by having someone there while I was out. Luckily the carer I used was someone we both knew. She was not intrusive when she was with him and in fact used to do the ironing!

Sago

butterandjam

Sago

Perhaps they feel you need a break.

I’m sure you would be entitled to some respite if your husband would be willing to go in to residential care for a few days.

I'm afraid that's an example of "not getting it".

I think that’s for the OP to decide.

I'm pretty sure she has already considered respite.

When I came close to collapse last year, social services agreed 8 hours a week respite care. This is a boon for coffee or lunch with friends, but DH counts the hours until I return, he only really feels safe when I am around. Putting him into a nursing home for longer respite would lead to a very rapid deterioration. The staff would not manage the quick enough access to a pee bottle or to sit on the loo. They would not have the time to listen and discuss his fears. He needs help with his laptop and mobile phone. Every second he is on his feet needs watching. He needs extensive physio, and someone who understands how to encourage him to do it and help with it. He cannot be left at night, quite apart from needing a pee or the occasional poo, his splint sometimes causes pain and has to be removed, or his coughing causes the bad leg to fly into a painful position. He has night terrors needing instant reassurance.

We are still husband and wife, and like to be treated as a couple. We can go shopping, eat out with friends, go to the cinema, even a trip to Center Parcs when treated by DD.

The care provided by unpaid carers saves the NHS £183 BILLION pounds a year, about the sames as the entire NHS budget!

B9exchange

When I came close to collapse last year, social services agreed 8 hours a week respite care. This is a boon for coffee or lunch with friends, but DH counts the hours until I return, he only really feels safe when I am around. Putting him into a nursing home for longer respite would lead to a very rapid deterioration. The staff would not manage the quick enough access to a pee bottle or to sit on the loo. They would not have the time to listen and discuss his fears. He needs help with his laptop and mobile phone. Every second he is on his feet needs watching. He needs extensive physio, and someone who understands how to encourage him to do it and help with it. He cannot be left at night, quite apart from needing a pee or the occasional poo, his splint sometimes causes pain and has to be removed, or his coughing causes the bad leg to fly into a painful position. He has night terrors needing instant reassurance.

We are still husband and wife, and like to be treated as a couple. We can go shopping, eat out with friends, go to the cinema, even a trip to Center Parcs when treated by DD.

The care provided by unpaid carers saves the NHS £183 BILLION pounds a year, about the sames as the entire NHS budget!

We persevere at being a couple, we go for a coffee or a meal, and stay with our ACs from time to time. Walking is hard, he has little balance and one leg drags but he can walk slowly so we enjoy going to the nearby park and break our walks up with the benches there. Was harder in the heatwave we didn’t get out much, not only was it really hot but due to more people in the parks all available benches were taken. Every trip needs careful planning but is worth it.
Shopping or the cinema etc could be more problematic because my DH gets agitated when there are crowds.
So very glad you get respite, that is an absolute boon as you say 👏🏽👏🏽👏🏽

Sago

butterandjam

Sago

Perhaps they feel you need a break.

I’m sure you would be entitled to some respite if your husband would be willing to go in to residential care for a few days.

I'm afraid that's an example of "not getting it".

I think that’s for the OP to decide.

Well you are clearly either very insightful or a mind reader.

Have you any good suggestions for OP?

OP could try explaining what she can manage rather that saying what she can't? Perhaps OP could suggest organising something for the others, stressing how long she is able to leave DH and what activities would they like to do within that timescale.
I think people mean well when offering longer outings, but it is difficult for those who haven't your 'lived experience' (hateful expression, cringe to use it!) to always remember what your life is like.
I organise outings for our local church womens group with two others. I can't go on all the trips, but everyone understands why now.

They are perfectly capable of organising themselves, as I said if suits me I go, if it isn't I say no thanks, I don't mind either way, it doesn't worry me.
We as a couple don't need respite at the moment, like someone said we go places together meals and coffee, don't tend to do evenings or holidays anymore it doesn't suit us, it's the leaving for long periods I don't want to do, I could ask a relative to stay but DH wouldn't want that.

My advice to OP, is not to smile and turn the other cheek.

Call her out, loud and clear in front of the group, with something so memorably sharp she gets the message and never forgets it.

62Granny

They are perfectly capable of organising themselves, as I said if suits me I go, if it isn't I say no thanks, I don't mind either way, it doesn't worry me.
We as a couple don't need respite at the moment, like someone said we go places together meals and coffee, don't tend to do evenings or holidays anymore it doesn't suit us, it's the leaving for long periods I don't want to do, I could ask a relative to stay but DH wouldn't want that.

I completely understand the ‘not wanting to leave him for long periods of time’.
I generally only go anywhere without my DH for 2/3 hours tops if I can help it, and my DD who lives nearby will drop in on him. But even though he has cognitive impairment he doesn’t want to be babysat and can get upset if I am not there. I also want to be with him because we have such a good routine now that works for us. Fact is our loved ones are not baggage to be offloaded onto someone else in order for us to enjoy life without them. Or at least that is how I feel.

butterandjam

My advice to OP, is not to smile and turn the other cheek.

Call her out, loud and clear in front of the group, with something so memorably sharp she gets the message and never forgets it.

Lovely.

butterandjam

My advice to OP, is not to smile and turn the other cheek.

Call her out, loud and clear in front of the group, with something so memorably sharp she gets the message and never forgets it.

..
But only if she wants to lose that particular friendship group.

It’s hard doing a caring role, nobody can fully understand until they are in that position themselves.

My DH looks very well at 83 but is almost totally deaf, which means he finds social activity very difficult.
So I don't like leaving him for very long.
People say " can't he have hearing aids?"
But they don't help much at all now.
So my life has changed as well.
I don't like going out to concerts on my own and leaving him at home.
We are gradually adapting to this new life
Many thanks to the Internet, where he can research things and communicate with people.
But being a carer,it's not easy .

i suppose as they are not in the situation they do not appreciate how it is for you. i am taking they are your friends not your husbands
i know how hard it is caring and other posters are right they maybe think that a rest would do you good
my daughter cares for a gentleman with similar a couple of nights a month. the wife has time to go away to see her children and grandchildren which normally would be too far to visit. my daughter is a sleep in carer as the gent needs turning several times a night, then carers in the day which come in anyway to wash, feed, change etc him

Unfortunately, respite isn’t always available. We moved to a neighbouring local authority some years ago. Suddenly, no care package at all could be offered due to lack of money. After eight years, DS receives four hours per week of respite. It’s hard to make arrangements for myself around this. There’s definitely no residential respite within this local authority. Where we lived before, he got a weekend most months and a week once a year. I’m on my own with him so have to work around his life.