Thank you so much for the messages of support, they have helped me so much. You are wonderful friends, you have supported without making me talk, which is just what I needed as I struggled to come to terms with things.
John is much the same, no better, no worse. His latest swab was still infected -- despite the GP's assurance that it would clear up on its own! It doesn't seem to have got into his bloodstream yet, thankfully. I'm feeding him Manuka honey after each meal (thanks, gigi).
I wrote a strong letter of complaint to the GP practice manager last night, encouraged by the staff. They (GPs) have been most unhelpful in all sorts of ways. They seem to think that because we're self-funding they can abrogate care. Well no, they can't.
I've got a meeting of the Integrated Care Pathways panel tomorrow, provided John is OK. We're supposed to be discussing end of life care! I emailed a copy of my letter to the chairman in case I couldn't make it, so that will be on the agenda, as an example of bad practice!
I must be feeling better, I'm beginning to fight back!
My thoughts and prayers are with you and John.
The hurt and the pain when we are told by the Doctors' are not what we want to hear.
Thank God for all the friends on Talking Point.
Love and best wishes
If you can make a difference it will be so worthwhile. As you know, 18 months ago my Mum was classed by the GP as being beyond hope.
All of us felt that this was wrong at the time. However there appears to be a feeling amongst many doctors that dementia sufferers are really not worth much. I first noted this on the HDU ward after Mum had surgery when a nurse thought that she should be written up for IV feeding but that it was not done. It was only hindsight that made me realise that this was odd!
Hope that John does improve and I am sure that you will get him the care he deserves. You are a courageous lady.
You and John are both in my thoughts. As you face this final stage, I can only say that John has been so very fortunate to have had you "in his corner" over the course of this dreadful disease. There are still things you can do for him to ensure his time left is as peaceful as possible. Knowing you as we do from TP, I'm sure you will not cease doing everything you can for a single moment.
Please know you have the love and support of us all. We admire and respect you so much. Sending you every best wish for the grace, the courage and the strength you need at this time.