Should we be TOLD MORE about a Home Passing ? CHOICES ? ?

Hello Geoff

I totally agree with you. people are well meaning and I can understand why the hospital might agree to Anne going home. I think during my husband’s illness we didn’t know all the facts. Not that they were deliberately withheld. Just we didn’t know what we didn’t know.

One of the reasons I admire Anne so much is that she made the decision not to have chemotherapy. There seems to be a feeling that you have to try everything. This is my view and I do respect others feel differently.

Squeaky

Hello Squeaky

It seems we are thinking along similar lines here Squeaky.  Yes. Anne knew that with her past knowledge of Non Hodgkins Lymphoma treatment and the fact she has  Lupus, an incurable immune system disorder, trying to snatch at life as if in an attempt to live for ever was totally futile. Sadly no one can live for ever and Anne knows  this. As she said to the Specialist. " I've had my three score years and ten.Just let nature take its course." ( For those who don't know this. Its a biblical quotation. Although Anne would tell you she is a lapsed Catholic.) Yet something quite touching today happened. A member of the local Catholic guild visited Anne and our family. He asked if it would be OK to say a prair for Anne and give her  a part of the last sacrament to Anne. I was ready to say no thanks but Sarah gave me a nudge in the side. She knows me well. And so Anne was asked if she would like this and she nodded a tiny yes. So it was done with this man finally forming the Catholic cross on her forehead. Anne smiled and I was so touched by this I shook his hand and thanked him along with a God bless. I'm totally non religious but this man deserved respect. And despite Anne being a lapsed Catholic something from her past came forward to give her comfort. Bless her heart.

Good morning Geoff

This was a very touching episode with this gentleman. I don’t follow a religion myself but I think it’s important to be respectful of those who do. I’m sure it gave Anne comfort.

Squeaky

Morning Squeaky

Yes I know it gave Anne comfort because she gave a tiny nod and a smile as best she could. As I said Anne is a lapsed  Catholic in the formal sence of the meaning but deep inside she has her own beliefs. 

Geoff

Geoff - I am 100% with you here.

I knew the 'theory' of this disease - what the words meant on the page and on the screen - and had seen Dad decline - his anorexia and the dehydration. But he wanted 'not to know' and when he asked of us to to help him have a home death Not least because of all the pain and trauma which he had endured in recent yea with his first cancer, surgery, chemo, CDiff infections and isolation nursing then painful cannulas and procedures) - we promised. I promised to be there all the way and to make sure that he did not suffer. I believe I failed. Failed not for lack of trying but because his last week to 10 days were A-typical... and I was experiencing it in the moment, relying on others and their reassurances, despite my reservations.

I think he imagined a peaceful death with family around like in a movie... being conscious to close the end and being aware of being loved etc. But he wasn't... and it wasn't. I have certainly been traumatised and am getting counselling to try to disrupt the images and memories, thoughts and feelings of the last 72+ hours of his 'life' as the culmination of everything we did for and with Dad. I am haunted when my eyes are shut and I can still 'feel' his skin. I dream of dead horse in the desert, dried out - but with my darling dad's face on them.

If Dad could have communicated in those last 5 or 6 days, and certainly in the last 3... I believe he would have changed his mind - if not for him then for us. Plus the DNurses have such controls on their protocols (understandably) that there is little bespoke/individual/ or thinking outside of the box possible unless you become a 'problem' relative.

It has certainly informed members of my family about the need to consider their choices and their loved ones experiences.

I have a meeting planned to discuss some of the issues with the specialist nurse and for her to feed back into the system, our experience. I hope it will help as one of those - unusual situations/cases and where discretion ought to have come into play earlier.

A friend wrote in support  "You're not a hypocrite for finding the last stages so awful - just a loving human being. And keeping a promise, when the askers don't really know what their request entails is further testament to your incredible strength and support for others. You'll no doubt be kept busy with sorting and funeral arrangements. And then reflecting on your dad's life with other people who knew and loved him... and there is comfort in sharing good memories. At least it's a start in seeing him, in your mind, as he was, rather than in these last months..."

Today is his funeral and I have immersed myself in his past and his joy and his love for life - as a means to try to seehim in any way other than he was in that last few days.

I weep that I have time and hindsight about what I could have done or said... regret and sorrow that I didn't make more fuss sooner.

I am at a loss to find the right words to convey my heartfelt feelings towards you. You have done everything that was asked of you and more but I fully understand everything you have written so clearly and honestly. Your feed back  with the specialist nurse and on this forum, will I am sure help others. Thinking of you today xx

Hello Robin

i hope your father’s funeral goes well and that you get some peaceful feelings from the celebration of his life.

You saw what I wrote earlier on about end of life choices so you will know I agree with you.

Please remember, as Needing Friends says, you did everything that was asked of you. These bad memories will fade in time.

Squeaky