What would have helped you when your caring role finished?

All about caring Former carers
1

Hi.
I am just interested to find out from carers whose caring role has come to an end, whether because the person you had been caring for has passed away or moved into supported living or residential care. I know for a lot of carers this time can be understandably difficult and I wonder what you feel would have helped you when your caring role stopped or when you knew it was coming to an end? Perhaps, counselling, bereavement or other as there is a sense of loss whether the person you cared for has died or moved in to a residential home or supported living? There is also often guilt felt for carers whose cared for is moving on into residential or supported living.
Lot’s of carers especially those who have been caring for many years lose confidence in their ability to return to work, despite the fact they have so many skills, so would confidence building courses help? I imagine help with financial issues because income /benefits you may have been on come to an end, if you were the driver for the cared for and the car was a mobility car, then that has to be returned which can have a knock on affect. I am guessing there could even be housing issues if you were living with the person you were caring for and the property is rented, there could be serious problems as your name is not on the tenancy.
I have a family member whose daughter is in her 40’s and has learning and physical disabilities. Her mum had cared for her all of her life but recently made that step in supporting her daughter to move on into supported living. This is a huge step because naturally there are so many concerns as to is she doing the right thing, who will be her daughter’s voice if her mother was not around to advocate for her.

I don’t know what would help but maybe support groups for former carers, courses, practical information. Would appreciate any feedback. Many thanks. Fran

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I used to work in a carers centre and we ran sessions on these kinds of topics - couldn’t get people to go, except for managing stress and the confidence workshops. Then I hit on running sessions on Planning for Emergencies. And some of it did cover the 999 type of emergency.

But much of it was about preparing for a time when the carer wasn’t going to be able to care. And why it was important to think about it and prepare for it.

The sessions were really popular and for some people they made a massive difference, because part of the session was about giving themselves permission to think about the future now.

So yes - this sort of thing is really useful and can help people to identify skills they have, and to think about the future in a constructive way, rather than a fearful one.

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Hi Charles,

Thanks for this.
Yes, I agree that wherever possible it is better to have things planned for what happens next, especially if there is a chance the person being cared for will move on into residential care or supported living. I am guessing what happens in some cases is that things suddenly come to an end and the carer is having to juggle/handle so much all at once and it becomes rather foggy. An a lot of times as we know when people need practical support and have to try to get help, they have to put up with being on hold for long a time or battle the many options before you are connected to an actual human being.

Fran

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I think anyone who has been a carer deserves to be paid CA regardless of any other circumstances.
CA should be paid for SIX MONTHS after their caring role ends.
Caring is exhausting, when someone dies you are faced with organising a funeral, returning aids and equipment, dealing with masses of paperwork, but CA ends in ?4 weeks.
If the home is rented from the council, the carer may be told to move out within 4 weeks, made homeless.
This is utterly unforgiveable.
If someone has been caring long term for an elderly relative, surely they deserve rehousing? OK, in a smaller home perhaps, but not out on the street?
Also, funded back to work help, to brush up on skills.
Then if you are caring, you are wearing easy care easy wash clothes - so will need a whole new work wardrobe.
Lastly, but by no means least, time to recover mentally and physically not just for the loss of the person, but all those years of sleepless nights, giving 24/7 care for years and years.
I’ve been a carer for over 40 years, 10 carees in total. Pleaded for support, none came.
By the time my son was 16 my health was ruined, forever.

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Having friends who stayed in touch, would have helped greatly. It appears to be common from what I have read on other forums. Social exclusion is the main problem with being a family carer. You do not realise how lonely you are, until you stop being a carer.

The chance to return to my former job would also greatly help, not just in terms of finance. The ability to try and pick up where you left off in a familiar setting, would have been of benefit. Sadly my job no longer exists anyway!

More than three months carers allowance, it should be a year at least. Most upsetting to see equipment taken away like wheelchairs etc. knowing that I won’t push the person I was caring for in it anymore… the emotional turmoil warrants far more than three months carers allowance, surely?

Employers to be more motivated to take on a former family carer, I am looking for employment away from the caring profession. I think it might be a struggle, I do hope not.

I didn’t see any Nursing staff on the Ward whom I recognised when my Parent died. I wanted to pour my heart out to a couple of them. It would have been a big help, felt very alone in the hospital… would have been great to see a familiar friendly face. I spent many hours in hospitals, and you get to know some wonderful people who work there. I needed a hug… even if it was socially distanced!

The only help I have received is from Job Centre staff, they have been very understanding. Also contact an organisation like CRUSE for bereavement support, it really does help to talk to someone.

Thank you for this topic, I have never bothered with forums before. We really should be given more help as former family carers, shouldn’t we?

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Definitely need more support all through our caring role too!
How many of us knew what we were getting ourselves into?
In fact things as far, far worse due to the pressure on NHS beds. So many people here have been lied to, parents basically dumped on them. All the hard won rights to recognition and support have fallen by the wayside.
I’ve been asking for a new advocate an updated assessment for months. New advocate due tomorrow. I asked to have the last assessments for me and my son to be mailed to me. The SW said she’d print it off and would post a copy to me. NOT what I asked for. It still hasn’t arrived. I have some assessments, jus wanted to be certain there were no newer plans that hadn’t Ben shared with me. It’s happened before!!!

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When I worked at a carers centre we had a very simple rule. Caring affects your whole life. Even after the caring ends.

Even when most of our funding came from a local authority that refused carers from the moment the caring ended, we found funding to help us to continue supporting former carers. The effects of caring are not switched off when it comes to an end.

As Bowlingbun says, carers need more support at every stage of caring - including after caring ends.

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Thank you for your response. Apologies as haven’t been on here for a couple of weeks. Yes it is so difficult for so many carers out there who are suddenly thrown into chaos on top of their loss and then they often face financial hardship within weeks of their caring role ending. Also it is often difficult on a lot of websites to find an actual telephone number that you need in order to speak to someone about what your rights and entitlements re benefits. An then when you do find a number you can easily be on hold for an hour before actually speaking to someone. Also definitely equipment that needs to be returned and all the paperwork that needs sorting. An also what you have said about support further down the line re support for getting back into the work place. Often carers doubt they have any skills to offer when they have a huge amount of skills and would be an asset to the work place.

I am so sorry that you did not get the support you needed which should have been in place.





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I’m facing the end of my caring role in the near future.

I have been at it for nineteen years and spent seventeen of them fighting to get Carers Allowance… not that that did me any good. Financial abuse means that I have only ever received the back payment and I don’t get any of the monthly allowance.

I’m just about done with what I can do between the abuse and my declining health.

The thing is that I’m scared to break away from here because I think that I have undiagnosed Chronic Fatigue syndrome. Unfortunately, I am young enough to be required to work full time - which leaves me with the dilemma of what types of work I can do.

I walked out for a few hours a month or two ago. I walked a whole mile away before I couldn’t take one more step in either direction. My caree had to drive out and fetch me home or I was going to have to call an ambulance - I was this bad.

The consequences of my actions saw me pretty much bed bound for the next week, only getting up to go to the toilet or fix myself a sandwich (never both at the same time). It would be almost two weeks before I could sit in a chair comfortably for any length of time.

I know from my past experience with UC that they want me to be applying for full time employment, either as a cleaner, in a warehouse or working with children/in retail. It took me a lot of fighting to get my work coach to see that I can’t work and her pressure and constantly beating me with the metaphorical rod wasn’t going to change that.

There was nothing that she could do with me, so she signed me up to a back to work course that would take a year. I did this for nine months and attended conference building classes, CV writing classes, mindfulness classes and who knows what else they thought might help me… I got zero out of it because I still have most of the skills that they wanted me to relearn - I’m just not sure what work I can physically manage with this illness and the way that it affects me.

I need some sort of work experience where I can try actually working without the pressure of having to try and suck it up if the work is too much for me or I have an episode at work (I fall/collapse). As of the beginning of the Covid19 pandemic, they don’t seem to have any work experience type programme that would help me to better understand what I can and can’t do with my health the way that it is - so I’m stuck in the desperate desire to get out of here, while at the same time avoiding UC again.

I never want to go back on UC again after my last experience of it. I’m still no closer to a diagnosis or any idea of what work I could potentially do… but I do like the idea of trying to do web design.

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The chance to go back to work. Also a job club. A proper one that is not affiliated with a job centre however. The opportunity to make friends with other carers as well and time to have a hobby too.

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The CarersUK Listening service that i had requested before my mum suddenly passed in October was brilliant.
4 sessions was enough for me but i could have requested more. I used one to practise giving her eulogy, and 1 to talk about my son’s disclosure (also recent, sudden and shocking) of his childhood a***e by an older child, his childminder’s son.
Sorting out mum’s stuff has me in tears every day still, but its good to cry. I’m lucky to have the time as I’m retired.

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Mary,

I’m sorry about your Mum.

However, that’s good to know re the listening service, being so useful and supportive. How long did you have to wait after requesting it?

Sending you (((hugs))) re sorting out all your Mum’s stuff. Definitely better to cry than bottle up the emotion.

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Mary.
Sorry about your mum.
I remember sorting my late husband’s clothes. I looked in his wardrobe and could see it just hanging there getting the wardrobe ’ grubby" look. He had been in a nursing home for over 3 years and the clothes left were not suitable for the home. So my thoughts were,if I don’t do something about this, his lovely clothes will end up unfit for anything. With my daughter’s help I packed them without looking at them to avoid memories, ( admittedly not easy) and donated them to an animal charity. Told myself they would be good for 2 reasons. One,will help the animals as the sanctuary isn’t government funded, two will help people, especially if funds are short. I kept one of his coats, a favourite jumper. I remember bowlingbun saying that they are no longer there to hurt me,which actually is very true. I think about him every day, is very much missed,and don’t need clothes to remind me.
I hope my post helps you in some way.

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Since covid, hospitals don’t accept used items. Or at least the local hospitals where I live don’t.
I used a suitcase and some some large cloth laundry bags for hubby’s clothes. Couldn’t bring myself to use bin liners. Nothing wrong with them, I just couldn’t use them on that occasion

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Thanks Melly. I think it was a few weeks wait for the listening service. Hugs to you.

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Thanks Pet. All my mum’s clothes fit me. Even giving half away I shall never have to go clothes shopping ever again! But not her shoes, size 3, so they’ve gone to the refugees. I carry around gloves and scarves for my local beggars, she’d kept all my dad’s too.
I’m having a bonfire on her birthday next week - Christmas trees make a fantastic display! - to make me sort out the non-essential paperwork. There’s just so much! But I expect I’ll feel better once its done.

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Gave me a memory
I couldn’t wear my mother’s clothes after she passed but one pair of shoes were great for me in the winter months. I felt a sense of pride wearing them, especially as at the time money was tight and they served me well. I know she would have been pleased

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Things that are helping me now, and it is very soon, just a month on: -

the comfort from the care I gave my mum, her thanks and goodbyes
hospice support - starting soon when natural grieving subsides
being a pallbearer and doing the eulogy
sleep, lots of
making a memory box and putting some clothes aside to make a cushion cover
knowing that her clothes will help others when I pass them on.
my friend kidnapping me for a quiet village Christmas
walks, fresh air, open space
radio
music
space, saying no to people
Thinking of what I have got and the way forward through the loss

I will be passing my mums nighties to the hospice for their care at home team so that they can be useful for lonely old ladies with nobody to buy for them.

I want to donate her clothes to a charity shop in a deprived area which is very cheap so the locals can have some lovely clothes and Age UK benefits.
I will get a friend to help me.

Not ready to do it yet, the thought of using bin liners puts me off, which doesn’t add up because I put my twins into bin liners but then I was very angry about her sudden death.

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I couldn’t use bin liners for hubby’s clothes. I used a very large suitcase and some nicer looking storage boxes. I’m sure the charity was able to make use of all

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Lots of things would have helped me. For example a cheap diary to use for all appointments. Prayers. The chance to do research. Books that helped me cope whilst in the hospital.