Caregiver Burnout

Posted by Sharon F on 10th September 2020 Additional Needs, Advice & Support, Disabilities

Burnout:

noun

the reduction of a fuel or substance to nothing through use or combustion.

I am not sure I have ever reached burnout, but I have felt myself being carried towards it. It’s not hard to see how this can happen to a parent carer, doing what we do is very demanding on fuel. I have realised that the only way I can avoid it is to take action and do stuff to prevent it, ironically ‘doing stuff’ is one of the last things you feel like doing when you are heading in this direction. The trick for me is to get far enough ahead of it, upstream, before you get caught in the current.

One of the quite handy habits of people who live with anxiety is the ability to rapidly leap further into the future when challenging situations strike. For example, the cat pukes. Non-anxious mind: ‘the cat puked, I should clean it up’. Anxious mind: ‘the cat puked, what if she has an incurable disease, what if she dies, how will I tell my child, what if my child is psychologically damaged by this…’and so on. Although a largely annoying way of thinking (to put it mildly, anxiety is often debilitating) this comes in handy in some scenarios, one of which, for me, has been in anticipating burnout.

Earlier this year our daughter’s condition became much worse. She was suffering hundreds of drop seizures a day that lasted only a few seconds but violently flung her to the ground. They became so bad that we had to hold her up on a harness from the moment she woke to the moment she fell asleep. She would get out of bed in the night, have a seizure and crash to the floor in seconds. Her makeshift bike helmet (before I found out on a Facebook group I could get one through orthotics) made multiple dents in our fridge from her falls. She could no longer feed herself, lost the ability to talk, to use the toilet and to engage in any play.

We were, and are, devastated.

Somehow in the midst of this I was able to poke my head up, meerkat style, and see the prospect of burnout on the horizon. I went into ‘fix it’ mode. I knew my daughter’s condition was largely out of my control, we were following the consultant’s drug advice, but I also knew there were some things I could put in place to make this liveable with (practically that is, emotionally it takes longer).

I was able to call our community care worker and get emergency care support in place, get a helmet from orthotics, persuade the OT service that Covid was not a reason not to get us equipment to keep our daughter safe, and get her a safe bed and a chair with a head support so she would be less likely to choke when eating. They even ordered her a special harness from America for us to hold her up with. I spoke to wheelchair services and got her a buggy as walking outside became hazardous.

The care and equipment we have in place now is what has stopped burnout for us.

I know it would not be there had I not started organising it as soon as I could see where we were headed. I do think someone would have put it in place eventually but only after burnout had happened. Unfortunately that seems to the be the way services work, by then the journey back to being well can be painfully long.

I do appreciate that for lots of us, the ‘getting in there early’ approach is not possible for a whole stack of reasons. It’s just what helped me this time. I would like to think I could do this next time and, if I couldn’t, that I could manage to grab someone from our support network, download and ask them to do it for me. The organising itself takes lots of fuel and so I do find myself very depleted as school finally starts again.

I can also see that, all being well, I should have some days ahead when I can begin to revive myself again. I have walks, bike rides and a spot of shopping and lunch planned. Oh, and naps, plenty of naps.