To the Carers at Christmas, with love

To the Carers at Christmas, with love

19 Dec 2019

Patient Care

Many of you may remember Paula who wrote about the loss of her husband Spencer recently. She has asked us to pass on the following for anyone who is caring this Christmas.

Paula with her husband Spencer

To the Carers at Christmas, with love.

It can break you being a carer of someone you love. It can break you when the person who was so strong and capable and took care of you becomes the one who needs care themselves. It can break you when you face relentless tragic events with no let up and have no choice but to keep on going.

I used to hate going into hospitals yet this last year I booked and completed a First Aid course, called an ambulance 5 times, visited and stayed in hospital and hospice rooms night after night and became known to more medical staff than family members.

I used to be afraid of needles yet this last year I held my husband’s hand through hundreds of injections and blood taking and through endless hours of toxic chemotherapy. I administered injections myself, always preceded by "Sharp scratch!" said in a cheery voice which I hoped hid the shaky undertone of fear.

I could never even look at a used plaster or a grazed knee and yet this last year I learned to remove and apply an ileostomy bag, clean and dress wounds and be brave and strong when faced with things more horrific than my worst nightmares.

I changed sheets endlessly through dark nights, cleaned up bodily fluids, dried tears, hugged and reassured through panic attacks and become accustomed to dealing with finding my husband unconscious on the floor and not freaking out.

I had never been close to anyone who's died and yet I sat by my husband 10 hours+ each day for 11 days as he lay in bed in St Peter’s Hospice, battling to live and I held his hand and whispered calmly to him through my tears as he took his final breaths.

As I face this first Christmas without my husband I have been thinking back to last Christmas as a carer of someone I loved so much who was seriously ill. I remember the feeling of being alienated from the joy around me, unable to say ‘Yes’ to plans on offer as things were so unpredictable. There was an unspoken fear between the two of us that this would probably be our last Christmas and the pain of that was unbearable. We were like two haunted people smiling falsely through this period which is all about family and friends and yet inside I felt cold and empty and scared.

In some ways we were closer than ever as we were completely there for each other, but in another way the situation was divisive. At the heart of it was one person fearful that this would be their last ever Christmas and trying to deal with the enormity of that. On the other side a person terrified and upset that they would lose the person they love before the next Christmas. Both feelings entirely valid and yet even for each of us it was hard to truly imagine what it must be like for the other.

It's a long and relentless life caring for someone seriously ill and it asks more of a person than they ever knew they had to give. If you’re caring this Christmas then know that I see your strength and I feel your pain and while a lot of necessary attention is on the loved one that you care for, I see your tears when you get a moment alone. Don’t feel pushed into pretending to feel different to you do. Enjoy the things you want to and know its ok to not take part if it all feels too much. Forgive the people who wish you a Happy Christmas and a Happy New Year when you want to shout and scream, “How can we be happy?!” If there are moments when you feel you want to join in and forget the pain for an hour then do! No-one knows how it feels to be you, but you.

Give yourself love and care this Christmas, say ‘Yes please’ to all the care and support that is on offer to you. Know that you deserve it and know that the people who are offering it don’t find it a burden to offer it, they genuinely feel good to support you. Know that even on the hardest moments you are doing your very best and that is more than enough. My heart is with you this Christmas.

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