The mental health of carers

Becoming a carer changes  your life and can have a significant impact on your mental health.  Much has been written about the challenges faced by carers and how to cope with those challenges.  (Mind and the Carers Trust have helpful information on their websites (mind.org.uk/information-support/helping-someone-else/carers-friends-and-family-a-guide-to-coping; carers.org  ).   I would like to write here about some of the ways I have coped mentally with becoming the main carer of a young person living with Duchenne muscular dystrophy.  By 'care work' I don't mean regular parenting; I mean all the work to do with DMD over and above regular parenting - the personal care, the planning and organising, the meetings and appointments. 

I do not claim to be an expert or a professional, and would advise anyone experiencing mental health issues as a carer to get professional help.  Here I just speak from my experience.  The following are the three main strategies I developed, ways of coping that I wish I had known about when DMD first came into our lives.

Getting a Filing Cabinet
Tom’s diagnosis was an emotional bombshell.  In the weeks and months that followed we also had to get our heads around a huge amount of information and paperwork.  It was a vertical learning curve to find out about the condition, what we needed to do to manage it, and which professionals did what.

Getting a filing cabinet helped a lot.  In practical terms it helped to have somewhere to put the paperwork and to have somewhere we could find things easily.

Emotionally it helped.  It enabled me to separate out in my mind the many different things we were dealing with.  It helped me to feel more in control.  Filing helped to calm my mind.   I think it helped to have somewhere to ‘put’ DMD – it was a way of getting it out of my head.  I could close the filing drawer and feel I had some mental space away from this terrible condition that threatened to engulf our entire lives.  It helped to separate DMD from my relationship with Tom himself.

A Weekly Day Off

For a year after Tom’s diagnosis in 2008, as his main carer I coped by manically sorting out and doing what needed to be done.  At the same time I carried on with my part-time job. Then in June 2009, like a cartoon character whose little legs have kept running even after going off a cliff, I inwardly plummeted.  I needed time to take in the emotional impact of the diagnosis, as well as time to deal with the practical things.  After several months of struggle I gave up my job. 

Along with work I lost structure in my week and a focus other than DMD and care work.  I became a slave to the Duchenne to-do list.  Every day was household drudgery, gritty organising of Duchenne-related things, and caring for our son.  2010 was quite dire.  There was no let-up and I felt depressed and empty. 

In 2011 I decided to change my approach.  I began to treat my care work like a job, and have a day off a week.  This approach was – and is – great.  I'm simply unavailable on Fridays for meetings or appointments.  On that day, I am allowed to do anything, as long as it is not on the to-do list. My Fridays generally involve walking in beautiful woods, watching some nice TV programme and/or reading a good book.  There is always cake. 

It has made a massive difference to my mental health to have a regular break and to look forward to something lovely every week.  Since 2011 I have been able to return to part time work as well.

The Quadruple Diamond

It is a challenge to keep track of everything I need to do as the main carer of a young person living with DMD.  Until recently I have woken up every morning (except Fridays) feeling overwhelmed with the sheer number and variety of small tasks that need doing. 

When I was growing up in Birmingham, there was a big advert on a railway bridge near our house for ‘Double Diamond’ beer.  And Buddhists speak of the ‘Triple Gem’ of the Buddha, the Sangha, or community, and the Dharma, or teaching.

I have decided that my care work is the ‘Quadruple Diamond’.  Tasks fall into one of four categories:  those to do with Tom’s physical wellbeing; those to do with his education; those to do with social and emotional issues, independence and self-esteem; and those to do with training and working with his assistance dog.

Instead of an endless to-do list, I think of the day-to-day tasks in these four groups.  Every three months, I write down, inside four interlocking diamond shapes on a sheet of paper, the longer term issues and what needs doing.  I keep the sheets in a ring binder.   

Categorising and recording my care work in this way helps me not just to keep track of what needs doing but also to keep in focus the purpose and the results of my work.  I can see what has been achieved over a given period of time. 

And the idea of the Quadruple Diamond helps to remind me that at the heart of my care work is a great treasure:  the health, wellbeing, and flourishing of our beautiful son Tom. 

Monkey World

I have an anger management issue.  I am asking myself where I can put these feelings of anger.

To cut a long story short, it's not Duchenne that sets me off.  It's dealing with a world that doesn't get it.  In the last three weeks, it's been: the officious volunteer at the Chiltern Open Air Museum, a venue that actually has good access, greeting us with a list of what Tom would not be able to access as a wheelchair user; it's my mum being charged £25 for a £10 taxi journey because we had a wheelchair accessible vehicle; it's feeling 'told off' by a restaurant owner who got very flustered when we arrived with wheelchair and assistance dog;  it's the unnecessary step from plane to corridor when we came back to Heathrow from our holiday; it's the 'wheelchair space' on the Heathrow - Oxford bus, precarious to get up to and sit in, too small, secured only at the back, without seatbelt, and taking twenty minutes to put together by the (very nice) driver who needed to consult the instruction manual.  It's the accumulated effect of examples like this going back ten years.  When we are about to celebrate the 2016 Paralympics, why is accessibility still not routine in much of the UK?

So how can I deal with my anger?  To carry it around eats me up, and fighting every battle is obviously not possible.  Cognitive behavioural therapy had me writing a diary of every time I got angry.  A 'mindfulness for carers' course had me observing my breath and sitting by a river watching the feelings flow by.  But I still want to thump someone.

'Let go and let God' is another option.  I'm not a believer but I have a good imagination.  What kind of god could I give my anger to?  Maybe the Narnia route, sitting by a stream in Aslan's country?

Then the image came into my mind of a tourist attraction in Dorset that I went to a couple of years ago:  Monkey World.  It's a refuge for primates rescued from abuse.  A wonderful place, with big enclosures and deeply caring staff.  I remember the gibbons silhouetted in their high tree top home, and how the children's playground was a lot like the chimpanzee enclosure.  The traumatised residents of Monkey World were accepted there as themselves, calmed, reassured, and eventually brought back to physical and mental health, their natural energy and grace.  I imagine such enclosures and such care for my own anger, fear, anxiety, frustration, and grief.  The God to whom I could give my anger would be like a keeper at Monkey World.

Direct Payments for Carers - my experience

Direct Payments - receive money from your local authority to choose and employ your own carer.  What's not to like, what could possibly go wrong?

We had a carer for our son Tom for 18 months, using the Direct Payment scheme.  Recently she left and we wanted to employ a new carer.  Here is the story of sorting out the employment of the new carer.

Having sorted through the job description, health and safety notice, and information on disciplinary and grievance procedures, and having updated the risk assessment, insurance certificate, employee registration form (not to be confused with the employee registration and liability form), and P46 for our son's new carer; having photocopied three forms of ID from our carer as specified in lists 1, 2, and 2a, and having decided that the carer personal information form was probably not necessary, the information being reproduced elsewhere, I realised that we needed electronic, or at the least new paper copies, of the contract and the employee registration and liability form.

I also wasn't sure if I still needed to complete the forms for routes 1, 3, and 6 of the DBS checking system and send them to the local authority, or how I could find the online DBS form our new carer had already done for another employer.

The original organisation who had supplied the pro-forma contract 18 months previously was no longer contracted by the local authority. I tried to phone the local authority's direct payments helpline, as given on my original 18 month old paperwork.  The number was no longer available.  The email address of the person who had at that time been my point of contact in the local authority was also not working.  So I phoned the number of the new outsourced direct payments organisation.  They told me they don't do contracts, told me to contact the local authority directly, and gave me the generic social services number.  That number put me through to the children's disability service, who put me through to my son's social worker, who we had seen the previous day.

All this took so long and was so frustrating that I neglected Tom, who was downstairs watching telly.  I got tea ready late and then tried to hurry Tom at bathtime; he started having a meltdown and I blew up and shouted at him.  And he's the one whose care and wellbeing this is all about.

The moral of this story:  policymakers, always keep your focus on the realities of life for service users.  Parent carers like me sorting direct payments are by definition in need of help with care.  They will be juggling the paperwork with the needs of their child/children and their jobs and household tasks.  Please keep it simple.  And please make sure there is one-stop-shop admin back-up for direct payments that can supply parent employers with the paperwork and admin advice they need.  Oh, and please make sure that the Direct Payments scheme is flagged up to parents via school or the health service - we found out about it through the grapevine, talking to other parents.