February 2017 – Our Experience

February 2017

A few months ago we were asked about our experience of the end of life by a Carer’s Support group.  I had to say that we’ve discovered just how differently each of us responds to our experience of the end of life.  And each of us has our own way of dealing with loss.  Every loss is different too.  And we couldn’t have prepared for ours, because it took us completely unawares.  The experience of Caring for a Terminally ill patient is life changing.  

Our experience is of cancer, a brain tumour, in our healthy & strong, academically, professionally & sportingly successful daughter.

A positive attitude proved to be so important.  We could be positive because we understood what was happening. We had good information, and we had good relationships with Consultants, GPs, District Nurses, Carers, Macmillan Nurse, the Man Who Brought Aids when they were needed, the Marie Curie Nurses, Maggies Centres. We asked questions and we tapped into all the support services offered.

Our preparation for dealing with end-of-life, began with diagnosis & prognosis.  The telephone call saying that the scan showed a primary brain tumour was completely unexpected.  Fortunately the care we had from all the medical personal we came into contact with was wonderful.  

Everything happened so quickly:  the emergency admission to hospital, the helicopter flight to hospital in Glasgow, the surgery, and the shock at hearing that her prognosis was 5 – 14 months … rocked my world.  

All of a sudden, the focus of our lives changed completely.

What kept us going?  A strong partnership.  Inner strength and instinct.  This was an instinct to care unconditionally.

We drew strength from our daughter’s approach:  her humour, the support from her friends & colleagues, her campaigns, her charitable fund raising, her determination & strength of character and will, her mantra:  Live Love & Laugh, the way she packed her life full, and her timely preparations, eg making sure we knew all her wishes.

For me it was important to keep a sense of normality, to continue working & social contacts going, we drew strength from contact with friends & colleagues, who provided invaluable support.

A point came when caring took over our lives completely, when her functions gradually diminished so we had to back up the nursing.  We never considered any alternative.  It was natural for us to continue to care for her at home, with the support of Marie Curie nurses some nights, District Nurses visiting each day, MacMillan responding to telephone calls & emails, GPs providing all necessary back up.  

This was full-on caring for both of us for the last few weeks.  For me it seemed like conducting a huge orchestra, co-ordinating times & visits from the services, administering medication, doing the laundry, keeping the house looking nice & smelling sweet,  maintaining contact with friends, hosting visits from friends, providing meals for whoever was in the house, etc, etc, etc.  Due to her diminishing brain function, in the middle of the night she’d ring her bell and ask for breakfast or to go outside (in the snow in temperatures well below zero) for a cigarette (she’d never smoked before).

Our world had turned upside down.  This put a strain on our relationship.  But we were both recognised that we were doing the best we possibly could.

The inevitable happened at a serene moment, there was no struggle, she just slipped away peacefully.  This was a relief.

The funeral directors dealt with everything with impeccable respect.   Our wishes were somewhat unconventional, and they were entirely supportive and treated us with the utmost respect.

Father & brother decided to make the coffin together, and this proved to be hugely cathartic.  And I lined it with materials inspired by her.  It was the ultimate statement in making her comfortable and respecting her wishes.  She had provided most of the ideas for the funeral, which involved her most significant friends.

We had two ‘Meetings’ to celebrate her life, as she’d died at our home, far away from her own home.  The first was at the crematorium, which we led, and significant people – friends & colleagues – were asked to contribute.  People drove & flew huge distances for this and we drew strength from the massive support & love.  The second was in her home village, in the village hall, in a Quakerly setting, with chairs set out in a circle, some silence, and people were invited to contribute.  This was followed by food & music.  It was full of merriment, which was just as she requested.

The Aftermath:  Exhaustion.  Getting our home back to normal.  Getting our lives back.  Dealing with her estate and wishes.  Establishing a new ‘normal’.  Recovery from life being turned upside down.  Finding ways to rebuild our life … it takes time.

Ann and Alasdair