Hi Sara-Jane
I have got my dad so im not on my own but he will not budge he says that because every now & then she smiles that she is responding to us but im not so sure
The crux of your situation is your Dad.
You have two people to care for here. He must be in agreement with any decision regarding his wife as, if only in legal terms, he has the responsibility. If anything were able to be done without his agreement [and my belief is that legally his agreement would be necessary] then it could seriously affect him.
There are many sides to the "should we/shouldn't we" discussion. Mostly people tend to centre on the 'rights' of the person who is ill, and certainly they do have the rights. Often the rights seem to take precedence over the needs. And anyway, what right? The right to live - or the right to die with dignity?
But also importantly, there is the effect on close family. Too often the debate is couched in terms of a family placing its wishes in front of the needs of a sick relative. Whichever way: to say 'yes' or to say 'no'.
The responsibility for a decision is huge.
I have thought long and hard over the years about my Jan. Before her illness it was easy for me: if their quality of life is, as far as we can determine, nil - then let them go.
Once I had someone so close to me so badly ill, I thought over and over. At night, towards the end of her time being at home, when I had seen her in torment all day long, I would wonder whether I should put the pillow over her head. That shows how close to the end of my tether I was.
Yet that was never really a serious question for me.
But sometimes you have to test yourself to understand your true beliefs. It is also something that is the least possible option because the person, when asleep, looks perfectly normal once again, and of course they are totally defenceless.
Since Jan has been in her care home, a number of other Early Onset residents have come, and some time later, they have died of an infection or of heart failure. I have seen the grief of their relatives [as we are all 'in it' together, relatives of residents become quite close] but have always thought "if only..." But Jan seems stronger than any of them, including very fit younger men who have just...gone.
But even now, as I have to lie alongside Jan on the floor each day since, recently, she has lost the ability to crawl, while I still think 'I wish something would take her from all this', I also see that odd smile [and they are becoming less and less frequent] and think 'it wouldn't be right' 'what will I do after?' 'How will I feel?'
If the doctor said - and I know they can't - "I'll just give her this jab and it will be all over" I think I'd say no, to hang on until I am completely sure 'Jan' is gone.
When the ultimate happens, my belief is that I will feel relief. For her. For me. But also immense grief.
I have a new life to build and I am desperate to get at it, as time marches on for all of us, but I must not let my massive wish to be getting on with that [and my guilt at not being able] to affect in any way how Jan's time concludes.
The decision is forever, not just for discussion.
...these are all just a husband's thoughts/agonisings