Recently on Facebook I asked for some insights into what it means to care for someone with a disability or serious illness/injury. In particular I asked :
- How did the carer cope with the situation?
- What were their biggest challenges?
- What would you have appreciated by way of support or input from others?
It was found that over 1/3 of the group suffered from severe or extreme depression, more than 1/3 also suffered from severe stress and anxiety.
What was most surprising was that a vast majority of the carers were not seeking professional help to treat these issues. Perhaps the carers felt that their own issues were secondary to those of the person they were caring for.. that their problems and health issues could be put on the back burner.
So this is the reason I asked the questions of my Facebook friends. I must admit I was surprised at how many of my friends have played the part of a carer at some point in their lives.
This is a very important point... we do not seem to talk about these issues enough ...and we can often feel alone and isolated because of our caring responsibilities.
The next point that seems to come through- is the need for carers to feel and be 'real' in their situation and find ways to acknowledge the processes they are going through.
Also it's important to have good friends around you to support and as Ben says - 'distract' - you.
I might interpret this to mean that there is more to life outside of the caring role that a carer plays...that a carer appreciates being taken out of their caring role occasionally to allow them to think of things other than caring duties and the person they are caring for. We all need a break!
Here are extracts from some of the responses I received.
Carol-Anne wrote: I think one of the most important things for a caregiver to understand is that he or she has the right to be angry -- the right to feel tired -- the right to be frustrated. NOT acknowledging these things will only bring severe stress and end up with your not being able to cope.
Jodye wrote: I found in the beginning with Mum that I became almost obssessed with doing everything I possibly could for her. My life purpose was to be with her 24/7. I soon realised that this was not a good thing for her. She needed to keep experiencing a normal life.
Sue wrote: I think one of the more difficult things is people being unsure of what to say, instead of just saying what they feel. Platitudes don't work but pure empathy does help
Denise: Internally when I cared for my friend that passed away I was surprised at the lack of time to deal with emotions, there were so many logical day to day medical decisions to be made based on the patients daily condition.
Ben: A year ago my wife Cassi and my father-in-law were in a pretty horrible car accident, Cassi was in a coma for a week and I was totally unsure how she'd pull through, and if she did, what level of brain injury she'd sustain. For me in that time of uncertainty, the things that I appreciated most was company and distractions. Things to get my mind off the "worst case" thoughts rolling around my head.- luckily 3 months later she was out of hospital with no long-term brain damage and her physical injuries are almost completely recovered now.
Thank you to those of you who responded so generously to my questions. I hope that by sharing our own insights and feelings we may help others who looking after another, to realise that they are not alone..that they are not expected to do it all themselves.