Post Caregiving Support: The Gap No One Talks About

I haven’t been as open and honest with you recently. I’ve been dealing with a lot. But yesterday, when I  attended the Cardiff & Vale Carers Assembly, it made me realise that I should still be opening up and not just sharing blogs on crafts and activities.  

At the conference, I finally met some wonderful friends, in person, that had supported me through my caring journey. 

And I met Chrissy, a former caregiver sharing her personal journey of caring for her father, long distance caring, as the primary carer, working through it all and then being diagnosed with ME.  

She was so passionate about caring, and promoting collaborative groups for carers and she gave me some great advice about the menopause (another string in her bow, I don’t how she does it all!) 

But she asked me a question that stumped me and maybe might have changed the course of my post caregiving role.

What caregiver support had I’d received since my caring journey had ended?

The Question That Brought Me Up Short

What caregiver support had I received since my caring journey had ended?

I kinda stumbled out an answer, I found it difficult to fully open up but I did share some details but it really sparked the idea for this blog.  I always promised to share what’s really going on, answering difficult questions, raising awareness, sharing real details of being a caregiver and offering solutions from my experience on this blog. But I haven’t recently.

So, I’m going to share what’s really been going on and try to answer Chrissy’s question.

Post Caregiver Support

To answer Chrissy’s question simply on what kind of support that I received after my caring role ended -to be honest, nothing.

No one reached out, from social services who I’d worked with for mum’s care, from my GP who were caregiver friendly or any organisation, they’re isn’t a program or pathway that’s been built for former caregivers, you have to research or do the work to find out yourself other than a leaflet about Cruise Bereavement Support. 

But if you’re anything like me after mum died it’s the last thing on your mind.

When I stopped being a caregiver, nothing prepared me for what came after. There wasn’t a moment when someone handed me a plan or told me what to do. It was just me, paperwork, phone calls, and silence.

In the first weeks, I was on autopilot. I made all the calls, filled out the forms, and did what needed to be done. I was focused on practical things.

I was in a sort of organisational mode, dealing with the bureaucracy of death. I was focused on all the paperwork, the responsibilities, the announcements, contacting all the different organisations that needed to be notified.

Pushing Forward Too Fast

I thought I had been dealing with my grief. I thought I went through the stages, that I’d been processing it in some way. I wrote about it here in this blog. But in reality, I wasn’t. Within eight weeks, I was already looking for a job. I didn’t want anyone to call me a “benefit scrounger.” Those words have such bad connotations for those in need for years, and I didn’t want to deal with it. So I rushed.

I got a job quickly and thought that meant I was coping. I told myself everything was okay because I had work, a team, a routine. But I’d only pushed the grief further down, I’d experienced it, so surely now it should be getting easier?  

Living with Loss

I did not expect this, but losing my mum felt like losing a partner. We shared years of daily life. Care, Love, Art, Outings etc. Small jokes that no one else would get. When that stopped, the house went quiet in a way I have no words for.

Grief is not tidy. It does not follow your calendar. It shows up when you think you have managed it. And that’s what happened to me.

When It All Hit Me

I, honestly, thought everything was fine. I was dealing with people on the phone who were going through their own traumas and difficulties at work. And I think someone said something that triggered me.

I spiralled. I went completely downhill. I don’t know exactly what it was, but I couldn’t stop crying. I couldn’t sleep at all. I couldn’t get rid of these swirling, repetitive thoughts,  guilt, lack of purpose, feeling worthless. So I went to the doctor.

Trying to Find Support

The doctor told me I was dealing with depression and that I hadn’t processed my grief. I’d been operating in a kind of bureaucratic mode instead of actually really feeling anything. But I thought I was, I had been feeling so many emotions.

But something more cracked, and at some points, I had extremely dark thoughts. My grief hit a deeper level that I hadn’t understood, and so much more came flooding out. 

The only solution at the time was to ask the doctor to prescribe me medication, because I wanted those thoughts out of my head. It wasn’t something I ever imagined needing, but I didn’t have a problem accepting it.

If something can help, then there’s no reason not to use it!

Taking Medication

At first, nothing changed. I was feeling even worse, the thoughts in my head were hard to deal with. 

I couldn’t find any motivation. I couldn’t see ahead to what came next. I just wanted out of these feelings. My doctor changed the medication. 

I talked with bereavement services like Cruse bereavement support but they were one off calls on their helpline and I felt like I was reliving the whole thing each time. 

They were good to talk to, but the sessions were limited and it would take weeks/months to get a referral to a local counsellor. Our GP had a mental health specialist on staff, but I refused initially thinking that medications would work quickly, so when they didn’t I went back to them for a referral but again it could take months.

Why I’m Sharing This Now

That question from Chrissy surfaced the truth, ‘What support did I get after caring ended?’ None, unless I found it myself. No follow-up from anyone. No joined-up contact. No one is saying, here is the next step. Here is a number. Here is a timeline. I had to ask the GP. I had to figure out money and work on my own.

That was the moment I understood why I fell apart now. I didn’t step into support. I stepped into a gap.

I am not saying there are no services. I am saying there is no bridge. 

The Post Caring Gap

There is no automatic emotional support. No mental health follow-up. No practical signposting about benefits or work transition. If you knew about services, you could ask. If you don’t, then you suffer in silence. 

The only thing I got was a leaflet about Cruise Bereavement support as part of the death registration paperwork, nothing aimed at caregivers. I had to find my own solutions while I was at my lowest. And I think that’s why I’ve had this breakdown now.

There is no post caregiving support pathway. It is a gap you have to cross by yourself.

Building My Own Support

Since there wasn’t a clear system to fall back on, I built my own. I decided to pay for a private counsellor because I couldn’t wait months for stretched services. I’d reached a very low point. Counselling is helping me shift the way I think.

I’m contacting the doctor every two weeks for a review of what’s going on in my head and how the medication is affecting me. Thankfully, It’s starting to work. I’m writing again,making myself get out of my head.

At this point, I’m taking it one day at a time. I am improving slowly. I’m nowhere near whole again, but it’s taking some of the edge off.

I did not know how to write any of this before. I thought keeping it inside would make it easier. It didn’t. I’m embarrassed to share this, but I shouldn’t be. If I had post caregiver support would I have gotten so low? 

What Should Have Been There?

Emotional support, financial guidance, mental health follow-up surely? You know advice on money, work and bring you into community groups that could help.

Something to help someone step out of caring and into life after it. It’s not that complicated, it’s care after caring.

If you have lived through this stage, I would love to hear from you. 

• What did you find helpful?
• What was missing?
• What would have made a real difference?

You can leave a comment or send a message if that feels easier. I will read it. I will share what I learn.

Why I’m Saying This Now

I don’t want this to end on a negative note. I want to stop this constant crying, a thought comes into my head and the tears follow. That’s not something I’m used to.

I am improving slowly. I need to get my head straight first. 

Looking back at the question Chrissy asked me, what kind of support can someone plan for after their caring role ends,  the truth is that there really wasn’t any.

Today was one of the first days I managed to get up and get ready to do something (I almost didn’t go) and I’m grateful for that.

I’m saying this now because hiding the truth about mental health doesn’t help anyone. So I hope as always by sharing this that it helps others to know that they’re not the only ones. I pray that we all get through this.

Thank you Chrissy.

Reader Feedback – Sources of Support

I asked readers if they had any sources of support they’d like to share:-

• Sue Ryder Organisation– they support those approaching the end of their life or living with grief can access the support they need. They have a ton of online information and advice, but more importantly they online communities, as well as informal, in-person, peer-to-peer support at weekly or fortnightly sessions called “Grief Kind Spaces“