Death of child with mitochondrial disease

foxie48

My daughter has worked in intensive care units and says the most difficult aspect of the work is telling relatives that a loved one is not going to recover and she feels the best thing for the patient is to remove life support. Sometimes relatives disagree with her or between each other, usually they just need time to accept that their relative is not going to recover but it's often very stressful even when the patient is someone very elderly. I do urge people to talk to their relatives with regard to what they would want as it removes any feelings of guilt if they haven't tried to keep their loved one alive for as long as they can.

My daughter is a doctor too, as you know foxie, and has spoken in the past of having to deal with this dilemma. She also mentioned that sometimes the patients are very elderly with no hope of recovery, and yet the family still want the doctors to keep on trying to keep them alive.

There is a difference , a child with brain damage, a child with an illness, both are so devastating

I won’t go into detail but, DNR has its place. As does the decision of loving family members to say do not treat 💖💙

MOnica, apologies, I’d meant to acknowledge the very moving comments you mentioned from your mother. I’ve been blessed in not having to make the decision for my children. That has been some comfort as I negotiate the most difficult bereavement I’ve faced so far

How very sad for this family.

It is so distressing when extremist evangelical groups latch onto grieving and desperate relatives to peddle their doctrine.

May this wee lass rest in peace.

Monica. How brave your mother was.

maddieone My sister and I had experience, at a distance of the circumstances, your daughter descibes. Our DF was 92 when he died. He died in distressing circumstances after a 3 month illness. He had been fully mentally alert until the last second of his life which made the circumstances worse.

After his death we was suggested that we spoke to the PALS - counsellor - she probably was, who was absolutely amazed that the two of us accepted his death as the natural end to a long and effective life and we had a profound relief that his sufferings in the last few weeks of his life were over. She commented, just what your daughter said maddieone that so many people were angry that their relation had died even when, like our father, it was blindingly obvious that there could only be one outcome.

Wise words from M0nica, as usual.

I’m so sorry Monica that you found yourself in this position, and also that your mother had to make such a difficult decision. Sometimes death is the better option.
When my mother was clearly coming to the end of her life, aged 94, I asked the care
home staff to please not send her into hospital, but let her die in her own bed, looked after by the lovely staff there. They did, and she died peacefully a week later.

maddyone we had the same with my Mum who had become seriously dehydrated with Alzheimer's.

Her very sensible GP outlined the options and likely time frames: hospital admission and rehydration would give her at most three weeks, stay at home and she would be dead by the weekend.
He agreed to Dad's request to keep her at home. District nurses and extra carers were brought in and the GP came every day.
Mum died peacefully, at home, in her own bed, three days later.
We had all agreed with this and were so grateful.

Whether I would find it so natural to accept that it was time to let a little child go, is another matter.