Tuesday, 27 September 2016

Carer Burnout- How do we recognise the signs?

Self Portrait

As a Carer you fear hitting a brick wall. What happens if you wake up and you just can’t care anymore? 
Mentally and physically you are broken. After six years of caring full-time for my twins (who both have disabilities) I am here, I have hit a wall hard and I have crashed to the floor.

I sleep in fits and starts, partly my own mind and body unable to relax, partly because my son who has brain damage rarely sleeps through a whole night. I wake as tired as when I went to bed. At one time no matter how difficult my day had been my head would hit the pillow and I would wake up refreshed. But not anymore. I wake up with joint and muscle pain most days; it might subside but only for a couple of hours.

Over the course of the last 12 months I have been repeatedly dismissed by my GP’s surgery when I have gone in with symptoms. It’s a Vitamin D deficiency, it’s hormonal changes (I’m 44); It’s depression (I don’t feel depressed). I have migraines; well that’s those hormones again.

But through all of this I have continued to have overwhelming exhaustion like nothing I have experienced before. Even when I was averaging 4 hours sleep a night when the children were small I never experienced fatigue like this. At no point did any doctor say ‘Its Carer Burnout’ do they even know what Carer Burnout is?

Last week I went back to my Doctors surgery again. This time a GP with a good listening ear said ‘I think you have Chronic Fatigue’. He has referred me to a Specialist, but then what? In order to get well I have to take away my stress, but I can’t stop being a Carer, and I can’t abandon my kids. In a recent review by our family support worker it was evident that extra support will only appear if I collapse, and I am almost there.

I had not realised how much I had burnt out. Apart from a few hours of respite over the six-week school holidays I did most of the caring on my own. A week away was no holiday for me and my husband as the unfamiliar surroundings sent my son in to meltdown every day. While I have had my symptoms for a year they are worse during the intense times of caring during school holidays.

So how do you recognize burn out? I am seriously angry that no one, not my G.P, not my family support worker has ever given me a list of what the signs are and details of how to get help. But then why would they. Carers are expected to stay silent and just get on with it. Below is some useful information on Carer burnout from Care Watch.

Can you answer Yes to the following? If so then you have Carer Burnout.

I feel overwhelmed, exhausted and drained, even after a rest. (YES)

I feel helpless and hopeless. (YES 90% of the time)

I no longer want to be around my loved one.

I have angry outbursts that are uncharacteristic (YES)

I am increasing irritable and impatient. (YES)

I have thoughts of harming myself or my loved one.

I feel increasingly resentful. (YES, I WANT MY LIFE BACK)

I am neglecting my own needs because I don’t care any more

I am eating, drinking or smoking more than normal
(YES, Pass me more chocolate)

I have difficulty relaxing

I am neglecting important responsibilities.

I rarely see or contact friends or family members

I have difficulty sleeping.

I have lost interest in things I used to enjoy.
(YES, partly because I am so exhausted)

Wow! Why isn’t this in a Questionnaire that Family Support Workers, Social Workers and GP’s can hand out? I don’t have the answer right now, but I am determined to find out. This should be a huge red flag for Doctors yet its not being treated as such.

Care Watch goes on to describe several factors that can push a Carer to the Burn Out stage.

- Providing continual care for someone who is unable to reciprocate their feelings or show gratitude for their care.

- Feeling deserted by family, care services, religion or a partner

- Fears about how long you can cope with limited support

- Frustration and disappointment that, despite the efforts put in, your loved one does not make progress or continues to deteriorate. This is a failure to accept that the care you are providing is not the cause of the decline.

- You are reluctant, unable or unwilling to seek out or accept help from others.

So how do we change things before it is too late? 
I am now in a stage of chronic fatigue and I have to claw my way back to good health some how. As I write this a bunch of people from Social Care are going to sit around a table with my family support worker and decide if I am exhausted enough; and if my kids needs have worsened enough, for me to access more respite care. Should we really have to reaching our breaking point before anyone steps in to help?

How can I help my self? Well Care Watch has some useful suggestions and with some discipline I hope to make the right changes:

Diet – or rather lack of it. I need to ditch the caffeine and the chocolate. Both of these have fuelled my caring days for the last 6 years.

Exercise – Something slow, maybe Tai Chi for now.

Meditation – Not only relaxing but also an opportunity to improve my mental wellbeing.

Creativity – I am currently doing some self-portraiture. Both therapeutic, and creative, I also think it drives the message home of what it is like to be a Carer and feel silenced by a system that doesn’t carer for carers.

Acceptance – Be able to accept my feelings of anger and resentment and understand that they are only natural when I feel over burdened. Of course with acceptance one also has to come to a place of forgiveness and I am not sure I am very good at forgiving myself.

Write about how you feel – Well my outlet is a blog, but you could use a journal.

Most importantly for all of us who are Carers we need to:




If you want to know more about my portrait project visit www.kusuma.co.uk/my-blog

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