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Palliative Care - Carers UK Forum

Palliative Care

Share information, support and advice on all aspects of caring.
Well, kind friends, who have replied to me in the past. I'm a very intermittent visitor to this site. You all know what it's like being a carer. Long periods when you can't even get your hands on the keyboard to join in the conversations.
My dear husband, (who has COPD), is now being entered into the "palliative care" pathway. Makes me shudder with dread. There has been so much publicitiy lately in the newspapers with regard to the "Liverpool Care Pathway" and all it's attendant problems. I have to say that the COPD nurses are absolutely brilliant, and my dear old man wants to stay at home, and they are OK with that. They say that full support is there and he can be nursed and cared for at home. Please God that he can. I feel strongly, that if he goes into hospital, the so called "pathway" will begin. It's so frightening.....
Of course, we are still waiting to hear from the the Palliative Care Team. Our GP has written to them, but we have still heard nothing 10 days later. Is this good or bad? My husband's COPD Nurse said "it's something he should think about, but not for right now, but, the Palliative Care Team need to be aware and come and visit soon". So we wait, and wait. No doubt a letter will come soon with an appointment. A letter that neither of us want to receive though - especially my husband!
I always seem to be whinging on this forum, so forgive me everybody. My emotions just "well up", and I have to "spill them all out" sometimes. Bless you all, and I hope that your lives as carers are not too bad at the moment. Good days, bad days, and sometimes absolutuly "bloody awful" days, is the burden that all carers carry. Take care.
Nothing to forgive you for Charmian, this is what this place is all about-support for those who need it.

My mum received and of life care at home but we had very different circumstances from yours so hopefully someone should be along soon to try and help you.
Please also remember that you can talk about anything here-I have said things on this forum that I would never have said elsewhere about how I felt.

We need to be able to do that-it is our release valve. Take Care xx
Palliative care, delivered by the right hands can be wonderful if they get the pain management versus being mentally aware right.

Hope your hubby will be able to stay at home and that the pathway is a long, winding happy road full of memories you can share before his time comes to pass on to a better place.xx
Thank you so much poppet and ladybird for your kind words. It's 10.35pm, so I'm going to try to get some sleep now.
I hope you manage to get some sleep Charmian x
Hope today has dawned brighter for you Charmian.

You will always find someone here willing to listen to you even if it feels like moaning, and we will be happy to share your joyous moments (and I hope there are loads) with you as well.

Wishing you strength for what lies ahead.xx
I really feel poppett and ladybird that you really understand what it is like to watch your loved one suffer. It breaks my heart every day to see my "old man" slipping away. He hasn't eaten for months (just the dreaded "Fortisip drinks" which he struggles to drink). He's lost so much weight.
I think you are such remarkable people to reach out and comfort me, when you are in turmoil yourselves, and I thank you from the bottom of my heart for your wonderful words.
I get into such "tunnel vision" looking after my husband, that I forget there are others out there who also need comfort and help. I feel so selfish. I've got to get on this site more often now and see if I can spread some words of comfort and hope to others. It can't be all "me, me me...". Others need help.
On this Rememberance Day I think of my grandfather, killed in 1917, leaving my mum (aged 2 and her little sister aged 1) to grow up without a dad. I know how much my Nan struggled to bring up those two little girls on her own, and it's a good reminder to me that I'm not the only one struggling.
Bless you both.
Thank you x Now go and have a look at your inbox, you have a message there. Image
Hello Charmaine.

Please don't dread the call from Palliative Care. I fought long and hard for Mum to be taken on by the hospice as she also had COPD and certainly in Mums area, it was more often only cancer patients that appeared to have the majority of beds/resources from the local hospice.

Once taken on by the team (and like your hubby Mum was very reticent) there was no looking back. We had a consultant from the hospice come to visit who was able to talk about end of life wishes and pulled things together such as a DNR that Mum had requested. The nurse was always available on the phone whenever there appeared to be a problem with medication and pain control and also their help for me was wonderful.

I suppose in all Mum had the support of the team for about 12 months and I will always be grateful to them. It was even the team that the hospital staff turned to when Mum was finally admitted to support not only Mum but the family too.

Mums fear with COPD was always that the end would be so scarey, as you know only too well I'm sure it is so frightening when people with COPD cannot catch their breath. The team reassured Mum that they would be there and the end would not be painful. It wasn't and Mum passed away peacefully.

So many times when Mum was poorly she would surprise doctors and pull through against their prognosis and I felt that this would always be the case! I think it was the realisation when the team became involved that there would be "an end" that was so difficult to come to terms with both for Mum and myself.

Not wishing to eat I think is fairly "usual" for COPD patients and apart from anything else, the pure effort of doing so can simply be too much. It is a horrible disease and awful thing to watch a loved one suffer.

Charmaine, I hope you and your husband find benefit from the team and of course, I am always around somewhere at sometime on the forum if you want a "chat".

Bell x
I get into such "tunnel vision" looking after my husband, that I forget there are others out there who also need comfort and help. I feel so selfish.
There is absolutely no reason to feel like that at all, Charmian. So often we can bottle it all up and put on a brave face for others, but this is the place where you can let it all out and tell it like it is. There is always someone around who can listen.