Nearing the end

Hi 

I’m so sorry to read your post. You really must phone your palliative care nurse and I’m sure she won’t feel you are “bothering” her. You need to set up the care and support you both need at this point in time. All I can offer is a big virtual hug and caring thoughts.

Grasan

Thank you for your reply. I have realised today that I do need some help. This does not come easily to me. I somehow feel I have failed. I really struggled to get him out of bed today so that he could sit in his chair for a change of scenery. He’s been very down today. It’s made us both very sad. We have two grown up children who are very close to their Dad. Our daughters husband died suddenly just under a year ago and our son doesn’t want to believe his Dad is as poorly as he is. I really try and keep the struggles from them. I’m going to ring the nurse tomorrow, just to ask for advice. X

Oh I’m so sorry.  I would keep looking for help even if you think there is nothing to help.  I don’t know if the palliative care nurse will mostly have expertise in pain relief, etc or if they will also be able to support more generally in end-of-life emotional issues.  If not, keep trying.  Most people I know have said hospice staff have been excellent… so please keep trying until you can find someone with the expertise to help.  Best wishes.

Hi Carpetbagger

I'm so sorry to hear of your struggles. Your husband sounds like a lovely man who has coped as well as anyone during this awful illness.  

I agree with others who have recommended you contact the palliative care nurses.  I have found them to be amazing and willing to help in any way they can, 24/7.  In fact, they would possibly be shocked to know that you're carrying this yourself when they could be helping you. My husband is also palliative care with a terminal diagnosis and has stipulated that he wishes his end of life care to be in the hospice. As he has struggled with depression since his diagnosis he has cycles of staying in bed/pushing me away and I can honestly say that for me living with depression has been worse than living with cancer, so far at least.  However, he now has anemia which presents much like depression, making it difficult for me to determine whether he's in another depressive episode, or beginning to fail physically.  The hospice nurses have told me that I should ring them any time he goes into another cycle and they will come out to see/assess him.  He's currently in the hospice being monitored for just this reason.  This puts my mind at rest that I won't 'get it wrong' by assuming it's another episode when in fact he may be needing end of life care.

I do hope you decide to phone the palliative care nurse as I feel sure they will give you the support that you need.

Also, one of my husband's doctors told me that I should keep my adult children informed of the situation with my husband, as they would then be able to understand the reality of his (and my) struggles so that we could all support each other through this time.  He was right because, until then I had like you tried to shield them from the worst days.  Now, we can all admit to each other that there are days when the tears just fall, and days when we feel stronger and more able to carry on.  But knowing that I am keeping nothing from them has drawn us even closer together.

And whenever you need to unload, you will always find someone here who understands.

Thank you so much for your reply. I did phone the palliative care nurse. She’s on annual leave until Tuesday but arranged for the doctor to see my husband. Turns out he still has a urine infection despite 3 courses of antibiotics. They’ve started him on something new that we’ve not tried before and this morning he actually managed to feed himself his porridge. Don’t get me wrong, he’s still very poorly but so much more comfortable and less distressed. I was just so afraid that given his prognosis the doctors would just leave us to get on with it as he’s not going to get ‘ better’. Caroline ( the nurse) was able to explain to the doctor that this sudden decline was not right. Much love and thanks to you all. We will plough on and hope that he will be able to be wheeled out into the garden to feel the sun on his face just once more xx