After the diagnosis came the shock - and it was a serious shock. Sarah wasn’t dead but could still die over the few days pre-operation, during the operation or, it seemed, even post operation.
The internet provided many answers including all the unfortunate outcomes post surgery…. disability, speech impediments, memory loss, fits, and they were just some of the more “pleasant” ones. We faced many hours and days as a family with our emotions all over the place and, whilst I’m sure we visited certain questions individually, I know we didn’t face them together. What would happen to Sarah if the worst did happen and she lived to be little more than a nodding body? And could I cope with that? God it was a horrible time and I really feel for those whose lives have been so altered by the necessity to care for a loved one who can’t even pee on their own.
I’m a pretty realistic sorta gal and began to make copious plans in my head for dealing with all the possible outcomes….
Some weeks later I breathed again, it was like I’d been holding my breath for all that time only daring to gasp for air when Sarahs survival rate had hit an acceptable level. She had made it through some of the worst times and was home. Stupidly I thought she would get better quickly given my amazing nursing abilities, I mean she was at home, being fed well, I was about all the time…
But not so, she was shattered and slept like a new born awaking only to check what had happened when and where. The kids came over as did Penny, her sister, a trained nurse. We coped together for a couple of weeks and then bang… everyone left to resume their lives… Now I know that in a perfect world that would not have happened, but it did. In some ways it was easier to cope, less meals were needed, less shopping and there were fewer heart to hearts. I didn’t want to talk anymore, I just wanted it to be normal again…..
Over the next few weeks we got on with it all - I missed Sarah and the way we were, our chats, jokes, our ways. I began to seriously doubt why it had to happen to us and what was I supposed to make of it all. I lost faith, took off my cross and rang the Doctor.
3 months and 2 weeks later things have inproved. Sarah had a bad day today and spent it in bed. I was lonely, lethargic and lost - yes I did say improved, because over the last few months I had been very lonely, increasingly lethargic and so lost without her that I cried every night.
Still, people said it would be tough on the carer(s) and they weren’t wrong. I had coped fine for a while and then whoosh - massive wave time and gurgle gurgle gone.
I haven’t had the support from my family that would have been a great comfort and that hurts, but through it all I now realise what and who is important.
If your are a carer, take care of yourself - you will be called upon to do everything and will need courage, strength and the patience of a saint. Never give up hope and don’t bother looking for a reason for all of it - there aren’t any. I hope your “patient” recovers well and your lives together rejoin the path of happiness soon.
Sarah is coming on a treat - we are sooo lucky. If care is another word for love, then I hope I have loved well…
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