my Dad was diagnosed with pulmonary fibrosis about 18 months ago. Took him from being a fit and healthy 79 year old to a very ill 81 year old now.
He has been on a downward spiral since Sept 2021 and since Christmas has pretty much been bed bound. He finds even the most simple tasks very hard. It’s like every breath is a challenge for him. Last day he made it out of bed under his own steam was Christmas Day and he has really gone down hill in the last 5/6 weeks. His weight has plummeted as he has no appetite. He is down to 9 stone.
Took him to see the Respiratory Consultant this week after asking repeatedly for the appointment and unfortunately the upshot is that there is nothing more they can do and they have now referred to the Palliative care team.
We have the appointment with them on Tuesday and wanted to ask if any one knows what to expect from this appointment. What should I be asking for and what are the services that this team can give.
The consultant said that prognosis is difficult but she has written him us as 3 months remaining. She said May be more or less. She has recommended a Continuous healthcare plan is needed.
Im heart broken but also looking for help in making a list of what to ask and what to expect.
Xxxxx
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Precious68
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When my dad moved to palliative care district nurses came out and filled out a care plan. They also left a just in case box for morphine etc with us. They told us what to expect and what to do. They were very clear they were here to keep dad comfortable so not to worry about contacting them at any time. That was during lockdown but I think now your local hospice may also be in touch to offer support. Sending hugs it’s a difficult time for you all xx
I am so sorry that your Dad is having so much difficulty. The reply from Thomac is the same offered to me whem my Mum was end stage. From that meeting the cancer nurses were organised and everything put in place. My mum was moved to the hospice on the last couple of weeks. Make sure you get contact names and telephone numbers for anybody that can help you especially out of hours. Its a difficult time and hope you have family that can help x
Just want to say my thoughts are with you at this stressful time.. I Can't comment on care, treatment etc but I feel for you at this difficult time sending hugs. xxSheila 💕💕
It’s really heartbreaking news but at least we know and can focus on the time we have left. I’m a project manager so have been in organisational mode for the last year. Trying to sort appointments and carers and everything he needs. I feel now like it’s mostly out of my hands which is good and bad.
He is in good spirits after the initial shock and we are slowly working through some of the practicalities but we are also chatting lots about my Mum and the family and my dads life.
Thanks for advice and wishes. It’s really appreciated.
💔 The care my Dad received was amazing. He was adamant he wanted to stay at home and he did. He was surrounded by and included in, the love, laughter, squabbles and joy of his family even at the very end. I can't help with practicalities but talk, then talk some more as a family. Ask about his childhood, his teens, how he met your mom. It will be hard but can be a strangely beautiful time too. My thoughts are with you.
Just to add my hugs and heartfelt best wishes to you, your dad and family , your last paragraph above is so positive about Dad being in good spirits and you all making the loving best of the time you have left. He must feel the love and support and he sounds a lovely man .
My mum had a rogues gallery on the wall by her bed of her grandchildren and great grandchildren which brought her much pleasure.
On the practical side, there are calorie laden drinks, milky or juicy plus pots of deserts he could be prescribed. You could ask about medication and ensure they don't run out, advice on avoiding bed sores, supplies of aids to help ie a pee bottle - I'm sure those will be organised. Will he be allowed a carer for personal care?
Hi, My late husband received palliative care from our local hospice. It is hard to give up some of the control, but my advice from experience is to take all the help you can get. You can then be a daughter and less a carer. Make the most of your time with him. Please take the offer of personal care as those who do it are the experts, which we aren't. Please enjoy whatever time you have left with your dad. Those moments are precious. Good luck.
I have no personal experience of palliative care but having lost two very close friends last year I can say that they and their families had nothing but praise for the care team that saw them through. My thoughts are with you all.
thing is when you dont no your ill you get on with life soon as you get told you have something bad you go down hill pretty quick positiv thinking is the remedy here
Oshkosh, did u get the fibrosis from Covid? Also, do you know why ppl with breathing issues experience lack of appetite? All I keep reading is that it's either because of the meds, or difficulty breathing while eating. My dad does not have these issues, yet still little appetite. But he did have covid, so wondering if it's the long covid as appetite issues can be a side effect. Thx.
So sad to hear this. I remember one of your previous posts. My dad had covid pneumonia that doctors left untreated. Some days are really bad, and others are not as bad, but never great. He too was very fit! Is your dad on steroids...Prednisone?
One thing I have found about the pulmonologists and hospitals today is that they stink. I want to use another word but will refrain. They don't do anything for you unless you are young. Had he ever used a breathing device to help expand his lungs? It's sad that we are the blind leading the blind... have to learn as we go along. No guidance from doctors, not even in the US.
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