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?
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Poppin
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Oh Poppin my heart goes out to you, as a parent who knows what my prospects are I,ve tried to have the conversation with my kids, they refuse to listen, telling me I,m like a creaking gate, I,ll go on for ever, they can't face what I've already accepted.
My only suggestion is to start the conversation, preferably when your dad is not around, & ask her if she knows just how ill she is, you might find the relief of being able to speak about her illness with you might open the gates & you will both end up with a better understanding of each other
My heart goes out to you at this time,,you may find your mum knows a wee bit more than you think..Regarding discussing end of life care is hard i know,,yet you will at least have time to find out her wishes..May you all have a great summer to do all the things you wish with your mother..I myself,, had to do this with my late wife,,do not be afraid to let her see you cry it will be good for both of you,,she is your mum she will dry your tears,,,, god be with you....
My advice would be to get Palliative care on board at this stage if you can as they will support you and your family and help guide you. This is exactly what they are there for and i promise you it is wonderful support to have. Ask your mums GP for a referral, or your matron may be able to refer you.
Poppin, I'm so sorry you are having to deal with this. I do have experience of this, my mum had emphysema and although she did have a Will we didn't discuss anything else. Please don't worry, things will fall into place naturally - try not to let the practical things get you down, keep strong for your mum and your dad. I am sure your dad will have an idea of your mum's wishes even though he is in denial at the present. With best wishes, Libby
Sorry I've no answers but I wanted to pop on to say my heart is with you and I'll be thinking of you all the way. I'm so very sorry you're in this situation.
Like Mike I have no answers for you which I very much regret. I feel for you so much and I hope you find a way to explain to mum. Please keep us up to date how you get on and if you need to come on for a cry or a shoulder to lean on one of us will be here for you. Lots of love and understanding from Bobby xxxx
Thank you all so much, I really do appreciate your comments. I have a nasty habit of keeping all this inside which I know is not the way to deal with things. I will try to come here to unload
Hi, you sound alot like me, my mum has been very poorly since December, in and out of hospital and when she is home we have matron coming in, who last week suggested palliative care and i was shocked.i know my mum is deterioating but i don't think mum realises, my brother is grtting married in may and she keeps saying she will be better to travel 4 hour car journey, matron told me it could kill her, but how do i tell mum. I send you my wishes and hope all goes eell for you, so sorry i couldn't offer any advice,. Take care of yourself xx
Ihad the same with my Mum.I just could not talk to her about it.Then just beforeshe passedon she said,There is no need to worry everything is written down! God bless her.
Take care poppin ,my thoughts and prayers go out to you and your Mum.
Richard
Poppin, I've never had to have that conversation with a parent, however, I did with my husband. It wasn't easy. He didn't want to die and refused to acknowledge his terminal illness. I had to turn to the palliative care team - who were absolutely fantastic. Yes, there were tears, rivers of them, but he was then able to address a host of issues he'd been bottling up.
My heart goes out to you. Like many others on here, I understand what it's like and what you're going through. You're not alone. Thinking of you and yours x x x
Poppin,my heart goes out to you.You do sound somewhat alone,with all this on your shoulders.I do hope you have a good friend,or family member that you can relate to.Your Dad is probably in denial,maybe the only way he can cope,at the moment.
So glad the matron will be with you,when the subject is raised.The suggestion of the palliative team,is a great one,there will be support for all of you.
We are always here to listen to you,do keep in touch,
Thinking of you too Poppin and anyone else who has to go through this. It must be so very difficult. Try and stay strong and thinking of you and sending hugs. xxxx
Poppin, really, really sorry - this must be heartbreaking for you. I have never been in your position and pray I never will. My advice, for what is is worth, is to trust your instincts, you seem a very wise person. I wish you all the best and strength . Adrian
Oh poppin so sad you have to deal with this.You already have some good advice nothing to add just wanted to say thinking of you and sending hugs keep chatting it helps.
My heart goes out to you to Poppin. Very hard for you. I do hope that your hopes for some quality time this summer with your mum come true
I can see this is probably tougher for you than Mum. I'm so glad you have a good nurse there to support you. I wish you and Mum all the very best for the coming months. P
think you are right to think of things you can enjoy so that the best quaity of life that is left can be had and you'll have some lovely memories to treasure. I would also ask how sure the medics are of what seems to be a prognosis ... she may be a very very creaking gate for longer ? am thinking of you xxx
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