Carer Brain – Looking Inside the Brain of a Carer….

It’s Carers Week and there’s lots of stuff around about how us carers manage to juggle caring with a whole range of other things. Some folks manage, some struggle, some topple over the edge. There are many powerful stories about our trials and tribulations and the hard work we put in to making it work for the people we love.

What’s not always as visible is what caring does to our heads and as a psychologist I’m very interested in that, so I thought I’d do a spot of reflective thinking about the impact that caring has had on me and how I think.

• When you’re a carer things are pretty black and white and priorities are crystal clear, especially at crunch times.  Caring for parents with dementia and other illnesses means that at any moment anything can happen. A fall, an exploding microwave, a lost key, a distressed and frightened phone call.
• When you’re a carer, you dread what’s coming, you’re always expecting something to happen.  I still freeze when the phone rings, especially at care home getting up times and late at night. Is this the call? My heart stops, dreading who might be on the other end.  One morning on the way to work I got ‘the call’ about Dad. One day it will come for Mum.
• When you’re a carer your head is full of lists and appointments. You have total responsibility for someone else’s life. It’s not just my dentist, optician and GP appointments, the hospital appointments that come with health problems and the general ageing process. Pick up medication, buy milk, do the washing, pay the Day Centre.
• When you’re a carer, things can get pretty emotional.  Walking alongside loved ones who live with dementia brings with it all that is the best and worst of being human. The journey takes us to the heights and the depths of our emotional life. Love and concern  for my wee Mum can come rushing in at any time, almost bowling me off my feet. Mum’s bravery, her resilience and determination to find a way round dementia, her fight to stay independent and in control, her vulnerability, the kindness of her carers and friends, the thought of where dementia will take her, the worry that I might get it. Of course I’m emotional, of course at times it gets too much. 
• When you’re a carer you’re always asking favours and always grateful for small kindnesses and mercies, you owe everybody.  The carer Fiona who read Mum my daily diary note in the morning and initialled it so I knew she’d done that; Alf, the neighbour who kept a friendly eye on things.  The boss who never asked any questions if I had to leave early or flex my working for hospital visits.
• And of course there’s the guilt that haunts you whatever you do.  Although Mum might forget I’m her daughter, she still knows and loves me. At this stage in her journey, I can make her happy just by holding her hand and making her smile. I feel constant guilt that I’m having a run, walking on the beach with Ali, writing this blog, doing dementia friendly work when I have a Mum who I should be with. I will have life long guilt that somehow I am to blame for the awful experience Dad had in a nursing home until we got  him up to Fidra in North Berwick and he had 6 final, happy months.

None of these are unique to caring for parents, or dementia or disability, all of these are a normal part of caring, full stop. What people can fail to appreciate is the intense vulnerability of people with dementias; their total dependence on how they are treated by the people around them and that vulnerability increases day by day. A large part of being a carer protecting our loved ones from the inadequacies of the health and social care system, a system which often removes the humanity from the people who work in it. That’s what Christie was about for me, reminding us that it’s really all about people and how we treat each other. Outcomes don’t happen by magic, people are what it is all about and caring for people dementia means there is no way of avoiding this simple truth.

I didn’t truly understand what vulnerability meant until I saw Mum, tiny and frail in the corner of a hospital ward where she’d been most of the day after having been ‘discharged’. Someone forgot to tell me. She sat there in her nightie, trying to be invisible; the fear, confusion and pain in her eyes haunt me still.  I’d been at work, catching up on things and arrived for evening visiting thinking she’d been safe and cared for.  Every day until Mum went into the Abbey, her lovely care home, I rang her from work at 9am.  By 9 she’d be up, got herself sorted and would be expecting the carers. I wanted her to have a friendly loving voice to greet her in the morning and help her orientate to the day ahead. But there were many mornings  when there was a crisis I had to deal with there and then; the carer hadn’t come so she’d not had medicines; there was a leak in the bathroom; she’d had a nightmare she believed was real; she was searching her 3 rooms for my Dad. There were times when I had to put the phone down on a very confused and frightened woman, praying that the carers would turn up soon because I had work to do, planning my exit if they didn’t. Then I’d have to walk into a meeting as if there was nothing wrong.  Sometimes I just couldn’t compartmentalise enough.

Carers often live on the edge of a precipice; anything can happen at any time, you have to be always alert, always ready to act, hoping for the best, expecting the worst.  None of us know what will happen next, the difference is that for many carers we’ve a pretty good idea of what’s ahead, and it’s scary.

Now that Mum’s in a lovely care home, I’m not her only carer. Looking back I wonder how on earth I coped when I had a full time job and Mum was ‘living independently’.  I suppose the answer is that in the end I didn’t, I had to leave my work and my health and well being were pretty well messed up.  Lots of carers try their best to make it all work and just can’t, lots of us leave our jobs because we can’t stretch things any further, we go ping.  Caring undermines our health, takes up massive amounts of time, energy and brain power.

Caring takes over your brain, hijacks your emotions and gradually your confidence and your capability can get undermined.  When you can no longer do the things  you’ve always taken for granted, when you find your tolerance and resilience flagging, confidence plummets. Caring can take its toll and something has to give.

BUT now that my caring role is manageable and we are Mother and daughter again, I can look back and reassess.

• I know my priorities and can be quite ruthless in deciding what to do and when to do it
• I can juggle time, thoughts and diaries like a demon and when things go splat I just deal with it and carry on.
• I am agile, I can adapt to almost anything that comes my way
• I am gradually re building my confidence.

Caring for parents with dementia has been one of the most remarkable experiences of my life.  It has highlighted to me that what really matters is how we treat our fellow humans, especially the ones that are most vulnerable and sensitive. We’re all cheered by a smile and depressed by a telling off, people with dementia just show it better.

Carers of course need more formal support too and with our ageing population more and more of us will be carers at some point in our lives. And more and more of us will probably need cared for in our later years. The country can’t afford to lose carers from the workforce because we’re knackered or have to give up our jobs from ill health. The health services can’t afford lots of worn out sick carers who have given so much caring for others they can’t care for themselves. We’re going to need understanding, good quality services for our loved ones; support to help us stay in work or return to work after our caring role is done.  It’s do able and essential – a lot’s  been done for parents (though parents/carers of disabled children struggle and don’t get the support they deserve), surely it can only be a matter of time before we start to adapt things so that caring at the other end of life is supported too. Fingers crossed.

 

Take care

 

Sue