Diamond wedding anniversary

[Deb16]

My parents celebrated their 60th wedding anniversary last week! My dad has pulmonary fibrosis and 2 months ago the doctors told us he only had weeks left to live, we were shocked at this as he was only diagnosed with this disease 3 1/2 months ago. He is on oxygen 24/7 so the big party we had arranged for them had to be cancelled as dad is not well enough to leave the house,. Anyway we are glad to say he is still with us and we had a fabulous day ( though the snow tried to block our travels) with most of the family being able to get there. My parents got a card from the Queen to celebrate this event too!

It's my mums 80th next week, hopefully he will be here to see her celebrate this too!

I wanted to keep this a positive posting but also to say my dad wouldn't be here if I hadn't asked the doctors what else they could give him to prolong his life so that he could make it to his anniversary, they put him on 5 prednisolone (steroids) a day and morphine drops, the steroids are being reduced each week, this week my dad was down to 2 a day and collapsed, when I went to visit him, there was an ambulance outside the house, his stats were low, but as soon as the doctor came out she put his steroids back up to 5 and within half an hour he was much better, and has been allowed to stay home, and is staying on 5 a day for the next week. This is such a hard time for us as a family, but we are keeping dads spirits up ( and yes we let him have a wee dram of whiskey each night too) why not?

I am just annoyed that they were weaning him off the steroids when it's so obvious that this is what is keeping him with us this far.

They had stopped his daily care as well, but now the nurse will come in and check his stats each day for the next 3 days, but he will now get a carer back in to help him get up in the mornings and wash him for the next 2 weeks! I am glad of this though it should never have been stopped as this is when he collapsed when my mum was helping him to get washed and she couldn't help him get back up!

We are all hoping that we might be able to get him out for some fresh air when the better weather comes along, or just a drive in the car. Keeping positive is the only way!

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How lovely to reach such a milestone. And how angry I was to read that they had stopped his care. I am so pleased you made them see sense. xx

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Hullo Deb16, I was sorry to hear about your Dad. I think you have the right attitude - positivity is a help but hard to find in some situations. I hope that when the better weather comes, that you will be able to get your Dad out. xxxx

[Deb16]

Thank you for your kind comments, it's nice to have support from others who understand this disease. We are a strong family and have had many battles with the NHS over the lack of care and hygiene my dad received in hospital, we have put in a strong complaint but I really feel for the poor souls in hospital that have no one fighting their battles for them!

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Big congrats to your parents, for reaching that milestone!! I'm so glad that your Dad has such a caring family, & like you feel for people,that have no one to stand up for them,its realy not right in this day & age.All the best to you all,& hope soon enough he will enjoy a trip out,if only in the car,at least a change of scenery! Cheers to him & his wee dram,let him enjoy it,bless him,

Love Wendells xxx

[dall05]

Hi Deb16, Why are they reducing his prednisolone so soon, Ive been on 20mg a day for 2 years now and I have pulmonary fibrosis. There has been no really bad side effects even from this length of time. It works for me so maybe they should be increasing the dose not reduceing it.

Wish your dad all the best from me. Tony.

[Deb16]

Tony, I don't know why they reduced it, I guess we just accepted that this was how long he could stay on it not having any previous experiences. But I will certainly question this now I know that you have been on these steroids for 2 years. Are you on oxygen too? My dad has been given the do not resuscitate speech while in hospital from the consultant, which should never have been told to him on his own! Scared him and us. Thank you for telling me about your steroids.