I apologise in advance as this blog may be a bit all over the place.
My mum has been in hospital with exacerbations four times since December after being diagnosed with emphysema two years ago after a bout of pneumonia. For whatever reason she had not seen a consultant in out patients since her first hospitalisation two years ago.
Since February this year, we have managed to get a community matron who is absolutely brilliant. She has been treated at home for another exacerbation. Our matron chased up the hospital and we finally saw a consultant a couple of weeks ago, who did spirometry, the first one she has had. He said she had about 20% lung capacity and her next exacerbation may be her last!! Fortunately my mum didn't hear him.
I told our matron what the consultant had said ( out of mums earshot), and she said realistically things were pretty poor, but would speak more when she had full results.
The matron came today as planned and she had the proper result of her spirometry, ( as my mums Carer, the matron said she would discuss my mums results with me before talking to my mum), her fev was 14%, which I gather puts her in the very severe category, but if anyone knows more about this, I would be grateful for your comments.
I spoke to the matron, again out of earshot, and she agreed that the next exacerbation could be fatal. She suggested that we find out what my mum wants if she becomes ill, ie., stay home or go to hospital, whether to resuscitate or not etc, :-(.
I don't think my mum is aware of how bad she actually is. As she has gone from fairly well to pretty bad in two years, which I think is a fast detoriation but maybe wrong, she keeps thinking she will get a bit better.
She has always been busy and gets really annoyed with herself because now she can't even walk to the kitchen without getting really breathless and needing to use her oxygen.
The matron ( Jackie ), has said next visit, she will start explaining the reality of mums results to her and what her wishes are.
My dad is really unrealistic in his expectations too, he wants my mum to have a lung transplant ( she is nearly 75 and would never survive the operation anyway). He is also very dogmatic and drives my mum to distraction.
How on earth do I discuss end of life care with my mum? How do I help her through these discussions?
I manage to keep my composure when I am with her, but a feeling of rising panic when alone, and being selfish, I am not ready to lose her, she is my best friend.
As this may well be her last summer, I want to give her a good quality of life and take her out and make happy memories.
Does anyone else have any experience of asking a parent how they want to die, what sort of funeral do they want, have they made a will etc?