Somehow it seems to get harder as time goes by.
Reaching that “new normal” is done and dusted.
To the world I am “fine”. I am coping and made a resounding success of Vic’s dying wish… Stepping Stone Hospice is going from strength to strength. I however am more fragile than ever. I long for the day that I will see my child again.
I live for that day.
I am grateful for the boys and that they give me a reason to live.
I however feel more angry with the doctors and the medical world as every day goes by. With the knowledge that I have acquired through Stepping Stone Hospice, I have come to realise that Vic did not have a “good death”. At the time I thought I had done a good job. Now I realise that, in my ignorance, I failed Vic.
Vic wanted to die at home. I wanted Vic to die at home surrounded by her loved ones in the comfort of her own bed.
Today I know that it was not the “best” for Vic, me or the family. Firstly, I was Vic’s primary and sole caregiver. I did not have the luxury of mourning her final days as a mother. I was “in control”. I washed and medicated my child. I moistened her lips. I brushed her hair and changed her pj’s. I made sure that everyone got fed; that the household continued running, I continued to blog and journalise her final journey. I smiled at friends and family and encouraged them. I remember my despair at Vic’s fear (which I now recognise as terminal restlessness); the agony of whether to sedate her or not.
I remember very little detail of the last weeks. I do however remember the horrific exhaustion. I remember allowing Vic to remain in the same position for two days. Her Hospice nurse never told me how important it is to turn Vic every two hours… I thought I was sparing Vic pain by not moving her.
I now know I caused her pain and discomfort by not turning her.
A memory that will haunt me for life is the bruising on Vic’s body. (Blood coagulates as the body system slows down.)
Yet I function. I attend meetings; I run my home and Hospice; I laugh; I smile…And then I cry. When I am alone I indulge in my memories of my child. I look at old photos. I listen to old voice messages that I recorded. When someone walks into the room I will smile and act as if the world is my oyster.