I have no right to be burnt out

Splashing About

Registered User
Oct 20, 2019
434
0
I’ve been supporting my father caring for my mum for many years. He was her full time carer and her disease progression has been familiar to many, marked by difficult behaviour, isolation (for him), lack of sleep and incontinence. I’ve spent time mid week and at weekends offering him support and company, taking them out, personal care for mum and occasionally staying over to look after them. In that time I’ve also taken over responsibility for being my sister’s main advocate. She is in a nursing home and I visit, take her out and keep on top of finances and medical appointments. So neither is a full time caring role. But I have a family and a full time job. So it all feels very full time.

I’ve been aware that my emotional state has become increasingly fragile and asked for a carers assessment. (I’d been identified as a carer by the hospital when visiting to support my sister and was going to ask them about registering my dad.). Not sure what I thought this would give me but I was fairly desperate and reaching out for help in any form. The CSW failed to follow up on this and after chasing for two months I decided it made me feel worse and based on her lack of response wasn’t going to offer me much support. A few weeks ago I had a meltdown with mum in hospital and the discharge coordinator referred me to the hospital based CSW. She missed our first appointment as she’d forgotten about it so I waited 30 precious minutes in my oversubscribed life and left. We rearranged to yesterday and she let me know (kindly) during our meeting that I’m no longer entitled to any help because mum is now end of life in a nursing home.

I’m apparently no longer a carer. My life has not changed though. I still support my dad, mum, sister in my evenings and weekends. I don’t live with them so anything I do in those hours counts as zero. I’m an imposter of a carer. An exhausted and depressed imposter.

I went home feeling worse than I did when I went into the meeting. I’ve never pretended my life was a full time carer and always respected the work of my dad who was full time. But the free time I have away from work is spent either thinking of them or practically supporting them. I think I had two evenings off this week. I’m not sure what I want from this post but I think it’s just to talk. The door to emotional support via CSW was slammed in my face with a firm “who do you think you are” message yesterday and I’m struggling.
 

Lyd

Registered User
May 27, 2019
84
0
I’ve been supporting my father caring for my mum for many years. He was her full time carer and her disease progression has been familiar to many, marked by difficult behaviour, isolation (for him), lack of sleep and incontinence. I’ve spent time mid week and at weekends offering him support and company, taking them out, personal care for mum and occasionally staying over to look after them. In that time I’ve also taken over responsibility for being my sister’s main advocate. She is in a nursing home and I visit, take her out and keep on top of finances and medical appointments. So neither is a full time caring role. But I have a family and a full time job. So it all feels very full time.

I’ve been aware that my emotional state has become increasingly fragile and asked for a carers assessment. (I’d been identified as a carer by the hospital when visiting to support my sister and was going to ask them about registering my dad.). Not sure what I thought this would give me but I was fairly desperate and reaching out for help in any form. The CSW failed to follow up on this and after chasing for two months I decided it made me feel worse and based on her lack of response wasn’t going to offer me much support. A few weeks ago I had a meltdown with mum in hospital and the discharge coordinator referred me to the hospital based CSW. She missed our first appointment as she’d forgotten about it so I waited 30 precious minutes in my oversubscribed life and left. We rearranged to yesterday and she let me know (kindly) during our meeting that I’m no longer entitled to any help because mum is now end of life in a nursing home.

I’m apparently no longer a carer. My life has not changed though. I still support my dad, mum, sister in my evenings and weekends. I don’t live with them so anything I do in those hours counts as zero. I’m an imposter of a carer. An exhausted and depressed imposter.

I went home feeling worse than I did when I went into the meeting. I’ve never pretended my life was a full time carer and always respected the work of my dad who was full time. But the free time I have away from work is spent either thinking of them or practically supporting them. I think I had two evenings off this week. I’m not sure what I want from this post but I think it’s just to talk. The door to emotional support via CSW was slammed in my face with a firm “who do you think you are” message yesterday and I’m struggling.

It's obviously rubbish to consider you not to be a carer :mad::mad::mad: Dont let the inadquately funded system define you.
 

annielou

Registered User
Sep 27, 2019
1,917
0
Yorkshire
:eek: Omg. Sorry the emoticon is not meant to make light of this that is genuinely my face as I read this.
I think that is terrible, NOT a carer! What are you then?
When lady came to see me from making space carer support service she told me I'd been a carer for a long time, long before I started staying at mums as I am now. (To be honest I didn't think of myself as one but I now realise I am.) she said I had been supporting mum emotionally for a long time with regular calls and visits when she was upset, taking and arranging appointments, helping her shop, helping her sort out bills etc she said thats what a carer is its not just living with someone full time its using your time to look after and care for them.
That definately sounds like what you are doing !!!
Also not to turn up to a meeting is terrible as finding time to meet them cant have been easy for you.
You must feel so let down and deflated.
Sorry I can't offer any practical but I really feel annoyed on your behave and send you love and sympathy x
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,443
0
Kent
Hello @Splashing About

If an insensitive CSW has no idea of the toll it takes on being a carer I hope your GP will have more understanding.

Please see your GP and see if there is any help out there for you.
 

Bunpoots

Volunteer Host
Apr 1, 2016
7,342
0
Nottinghamshire
My sister recently had the nerve to say to me that I wasn't a carer for my mum as dad was mum's main carer but I did all the things you have described and supported dad through the years of caring for mum, bereavement and his subsequent illness. A total of twelve years of my life have been given to caring for elderly relatives one way or another. Brother and sister don't see it but I did a good job and I'm proud of myself.

They think I cared for a couple of years. It annoys me if I let it but mostly I don't let it.
 

silver'lantern

Registered User
Apr 23, 2019
208
0
Oh @Splashing About .......can you take a moment to re read your post as if someone else had written it?
you give out advice and support to so many..... now maybe time to take your own advice.....look after yourself a little?
find your own 'walk' your own time....find you. If you break then others have problems. put some time aside for you.....hard I know but re read and advise yourself...re read and type an reply to the 'person you dont know that wrote it' then read your reply and see if you find it in yourself to act..and help yourself get some time out.
not sure that makes sense really .....but dont let an uncaring person tell you you dont care. that you are not a carer .... we know different... and we know the toil ...
take care
 

kindred

Registered User
Apr 8, 2018
2,937
0
I’ve been supporting my father caring for my mum for many years. He was her full time carer and her disease progression has been familiar to many, marked by difficult behaviour, isolation (for him), lack of sleep and incontinence. I’ve spent time mid week and at weekends offering him support and company, taking them out, personal care for mum and occasionally staying over to look after them. In that time I’ve also taken over responsibility for being my sister’s main advocate. She is in a nursing home and I visit, take her out and keep on top of finances and medical appointments. So neither is a full time caring role. But I have a family and a full time job. So it all feels very full time.

I’ve been aware that my emotional state has become increasingly fragile and asked for a carers assessment. (I’d been identified as a carer by the hospital when visiting to support my sister and was going to ask them about registering my dad.). Not sure what I thought this would give me but I was fairly desperate and reaching out for help in any form. The CSW failed to follow up on this and after chasing for two months I decided it made me feel worse and based on her lack of response wasn’t going to offer me much support. A few weeks ago I had a meltdown with mum in hospital and the discharge coordinator referred me to the hospital based CSW. She missed our first appointment as she’d forgotten about it so I waited 30 precious minutes in my oversubscribed life and left. We rearranged to yesterday and she let me know (kindly) during our meeting that I’m no longer entitled to any help because mum is now end of life in a nursing home.

I’m apparently no longer a carer. My life has not changed though. I still support my dad, mum, sister in my evenings and weekends. I don’t live with them so anything I do in those hours counts as zero. I’m an imposter of a carer. An exhausted and depressed imposter.

I went home feeling worse than I did when I went into the meeting. I’ve never pretended my life was a full time carer and always respected the work of my dad who was full time. But the free time I have away from work is spent either thinking of them or practically supporting them. I think I had two evenings off this week. I’m not sure what I want from this post but I think it’s just to talk. The door to emotional support via CSW was slammed in my face with a firm “who do you think you are” message yesterday and I’m struggling.
This is absolute nonsense. Please consider contacting an independent social worker, they are not that expensive and I hear good things. Good independent social worker.
I also hope your mum is having CHC funding for end of life.
We hear many tales of being demeaned by professionals on here. I am so sorry.
Kindred.
 

Palerider

Registered User
Aug 9, 2015
4,160
0
56
North West
I’ve been supporting my father caring for my mum for many years. He was her full time carer and her disease progression has been familiar to many, marked by difficult behaviour, isolation (for him), lack of sleep and incontinence. I’ve spent time mid week and at weekends offering him support and company, taking them out, personal care for mum and occasionally staying over to look after them. In that time I’ve also taken over responsibility for being my sister’s main advocate. She is in a nursing home and I visit, take her out and keep on top of finances and medical appointments. So neither is a full time caring role. But I have a family and a full time job. So it all feels very full time.

I’ve been aware that my emotional state has become increasingly fragile and asked for a carers assessment. (I’d been identified as a carer by the hospital when visiting to support my sister and was going to ask them about registering my dad.). Not sure what I thought this would give me but I was fairly desperate and reaching out for help in any form. The CSW failed to follow up on this and after chasing for two months I decided it made me feel worse and based on her lack of response wasn’t going to offer me much support. A few weeks ago I had a meltdown with mum in hospital and the discharge coordinator referred me to the hospital based CSW. She missed our first appointment as she’d forgotten about it so I waited 30 precious minutes in my oversubscribed life and left. We rearranged to yesterday and she let me know (kindly) during our meeting that I’m no longer entitled to any help because mum is now end of life in a nursing home.

I’m apparently no longer a carer. My life has not changed though. I still support my dad, mum, sister in my evenings and weekends. I don’t live with them so anything I do in those hours counts as zero. I’m an imposter of a carer. An exhausted and depressed imposter.

I went home feeling worse than I did when I went into the meeting. I’ve never pretended my life was a full time carer and always respected the work of my dad who was full time. But the free time I have away from work is spent either thinking of them or practically supporting them. I think I had two evenings off this week. I’m not sure what I want from this post but I think it’s just to talk. The door to emotional support via CSW was slammed in my face with a firm “who do you think you are” message yesterday and I’m struggling.

Its difficult, but take no notice of this CSW, clearly they have limited abilities and lack of understanding of the carer role, whoever undertakes it and how they undertake it. I wish I had been there, I'm sure they would have in hindsight changed their approach after a few words from me. The only way of dealing with this is to write a complaint, but you may feel that now is not the time for reproach.

@Grannie G has a good way forward, try speaking with your GP and see what they can do to help, often they will have something up their sleeve to get things moving in some way.

Ironically I have to say I have been met with attitude and put downs by other professionals, even professionals can demean professionals but none of that matters, what matters is that you care as well as your dad.

Stay strong and I hope you find help and some recognition for your own caring role
 

Moggymad

Registered User
May 12, 2017
1,314
0
You are not worthless you are priceless to your family. I really don't know how you do it all. Caring takes many forms not necessarily recognised by professionals so don't let that persons view diminish the hard work you do in 'caring' for so many of your family members x
 

Palerider

Registered User
Aug 9, 2015
4,160
0
56
North West
I’m crying reading this. She made me feel so worthless

Dry away the tears, don't let someone who is insufficient in their role make you feel worthless, people like that usually have personal issues or there are problems we don't know about. A work title means nothing, how a person treats you means everything. I've read your posts, I don't always respond in fact rarely, but what I have seen is a committed and caring individual doing the best they can and you are definitiely a carer in need of some help and support.

Tomorrow is Sunday so use that time to put it out of your mind for a day and think about how much you do to make everything tick over for everyone concerned.

Caring isn't a professional role, we all do it to varying degrees and that needs to be acknowledged
 

Splashing About

Registered User
Oct 20, 2019
434
0
Thank you to everyone who posted. I feel validated. Tomorrow I’m taking a day off (and I do know how lucky I am to be able to do this compared to full time carers) to go for a swim with friends in a local river and then will probably paint the spare bedroom. I recognise I need to look after myself which ironically I thought I was doing by having an assessment which was supposed to refer me to some emotional support.

I think my experience of caring has made me afraid of the future, afraid of getting AD (my gran and my mum both have had it) and afraid of going through it again with another loved one.

This afternoon I have been mourning the mum I remember from my childhood. Until today I’ve been unable to remember ‘time before’. I thought all my memories would be of the last few difficult years.