Some may remember me posting regarding my OH serious problems with COPD, pseudomonas and bronchecstasis and his long periods in hospital. Well, after four weeks of various antibiotics consultant said there was nothing more they could do so it was just a case of palliative care - given terminal diagnosis and Macmillan nurse thought a few months max. My husband decided he did not want to continue to "exist" as he had been and chose to go into the local hospice for symptom control before coming home. He has said if he gets another infection he does not want to have any treatment. He has been in the hospice for 6 days and finished the antibiotics course two days ago. They are administering slow release morphine twice a day and his usual COPD meds, but he is on 4lpm oxygen 24/7 - something he had never needed until the last hospital admission. The family has been to hell and back coming to terms with his decision but accepted it BUT ... since he has been in the hospice the transformation in him has been amazing. He is managing to walk around his room (attached to oxygen) is eating well and is far brighter than he has been for weeks. Does anyone think this is just a reaction to coming to terms with his decision or is there hope that they may be wrong? Difficult to answer, I know, but I am lurching from highs to lows mulling this over in my mind and it is driving me crazy!! Thank you.
I am really pleased for you both, that your OH is responding well to treatment! They don’t give my OH, his nickname for nothing! Please, try not to read too much into his improvement, just 😊, and think that’s my man!, best wishes!😉💕
Hi I am sorry to hear about your husband, but it is good news he is feeling brighter. We had a lovely long term member on here who was given 3 years, but lived another 11 so there is always hope out there. Sadly she lost her battle last year. x
Hi Bossidan, sorry to hear of your news, and so very hard for you to come to terms with this when your husband appears to be doing so well. It could be the morphine, as this helps you to breathe better and he will be free from pain. Speak with the staff there I am sure they can advise you, but whatever the reason, he at least seems happier and that can only be a blessing. Thinking of you . Irene x
Hi I have just returned from visiting and spoke to one of the consultants who said they were all surprised at his progress but not to read too much into it yet. She said it may be a combination of being out of hospital environment and the constant tests etc and the fact that the antibiotic might have actually done its job this time - no guarantees it will work the next time. They will continue to support him whatever happens and he is still very poorly. It is a real shame that hospices do not get government support as they save the NHS money in the long term. That said, if the Government got involved, the end product would just be another health institution. I really should NOT criticise as without the NHS my husband would, most definitely, not be with us. Thank you all for your input. Onwards and upwards!!
Everyone has given wonderful insight. I think finally letting go of all the stress and expectations of "fighting" , and "being strong" has probably lifted a weight off his shoulders. I would enjoy these moments with him, however long or short it may turn out to be. I have a friend who has been under hospice care for a year and a half now. Totally unexpected. Take care of yourself too. xx 🍀🌿🍀
Wow Caspiana, that is a long time to be looked after under hospice care, my Mum was only in St Annes for 8 days and they told me I would have to find a home for her, and badgered me until she couldnt be moved. It was a very stressful and emotiinal time for me without having to find time to look for a home for her to go into. I just couldnt understand it as they knew she was dying and in her last days. I cant say I have a very good opinion of these places due to that. Thankfully it seems, they are not all the same x
Hi Izb1 . That is truly horrific. I can't imagine why they'd push people out in that way. I think you were unlucky with that hospice. 😕 It is quite disgusting actually and I am sorry it happened to you. *HUG* 😘
Thanks Caspiana, I must admit I was shocked but the macmillan nurse said they dont like to take patients for more than 2 weeks, I was in fact being asked to leave everyday, just glad I didnt have to move Mum again x
That is very strange - I actually asked when my husband would be able to come home and the consultant said she was not sure - all depended on how he responded to the modifcations to his medication. They are certainly not in a rush to get rid of him. Such a shame that your experience has coloured your impression of these wonderful places - so sorry. Xxx
Maybe it is the policy at St Annes in Heald Green I dont know, but it did leave me feeling bitter and I try not to dwell on it too much. I must say because of this though i wont donate to any of their charities now. Anyway I am glad your hubby is receiving good care as thats what both you and he needs at this time. I wish you both the very best x
Hi bossidan 🌹 I’m so sorry to hear about your husband diagnosis I always believe in hope and of course for myself I believe in prayer. You should speak to a dr or someone who knows what is happening it must be great to see him like this please try and enjoy his happiness with him while it lasts as he may have been feeling really down after his diagnosis. I promise I’ll keep you hubby and family in my prayers and I really do hope for the best for your hubby. I know you need to stay strong and that’s going to be hard for you . Take care of yourself as well best wishes and please let us know if there’s any change either way good or bad we are here for you ❤️🌹🌹
First, let me say seriously Ok! My mother did a similar thing before she passed with copd, please don't be fooled by it, the hospital has a name for it! We had all gathered at home to say our goodbyes, when mum suddenly got out of bed and came out to join us for the day, we thought she had some sort of remission, but, no! 24hrs later she was in a coma and she was gone 2 days later.
It's not too unusual for this to happen apparently.
please, I DON'T MEAN TO BE CRUEL, I HOPE THAT I AM WRONG!
I lost my grandmother, mother, brother, my 14yr old furry friend, then my father in the space of about 3/4 years, it ripped my soul out. So, l am very weary of death, & now face the prospect of my own!
I'm NOT going, to discuss, the Rights/ Wrongs/ Accuracy and so on, of his Diagnosis/ Prognosis....Just be Happy, with this improvement, enjoy your Time together and, if he dies tomorrow, you have had TODAY! If he is Still alive, next year then Even Better. Discuss Happy Thoughts and Memories, plan for the Future. (NO GLUM FACES!!!) Why not go for a Nice Meal Out, or even, to the Cinema or Theatre...Alright the Rubbish Tip, if the roses have been cut! Let him ''Buy'' you a new Dress, or Shoes....Just Normal 'Things'- THAT is Life or, at least, Living. If he WANTS, to Talk, let him but don't 'Make' him, just enjoy each others company....How many years? and you NEVER had an argument....What ROT and rightly so!
I am sending, you both, my Love and Prayers- I will Remember you in them.
Feel for you both X But can only repeat what l wrote a few days ago.!! Diagnosed
terminal 11 yrs ago,went through all of the usual drugs. Then had Exacerbations time after time,in and out of Hosp. constantly (3-4 times a wk). Last time l stopped breathing,
woke up in Intensive Care. It was suggested by a Nurse that perhaps l could try Aoxocillin
twice a day. That was a good few years ago now.And yes, l felt like your OH did,i.e had
Enjoy your time with him. I remember discussing admitting my mum to a hospice. They explained that some people really rally for a while because hospices do everything to meet their needs and make them comfortable and they can even get a 2nd wind. They told me that if that happened that at that particular hospice they would be sent home until they needed to be readmitted.
You can graduate from hospice. They told me that to then they put me on Daliresp I quit going to the hospital I was on the medication for a year on my fourth year being out of hospital.
My mother was in I.C.U. late August 1999, doctors said she wouldn't last the next winter! Which gave us about 8 months. She lived til February 22 2002. So, l agree.
BY THE WAY, mum never went to hospice, dad & I looked after her.
Hi Bossidan, It is hard to say why he is better, so as others have said, you can speak with hospice. It is not uncommon for people to go on and off hospice. All the drugs they give you start to feel worse in time, so just going off them, may give him a boost in energy. Perhaps being on pain medicine he is able to relax his airways, and along with the oxygen, that gave him a boost?
It is a blessing during a hard time. Wish you both well.
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