Topic: Sensitive Questions

My husband was diagnosed in December and was not a surgical candidate. He made the choice to not have any treatment based on his experience with his dad and grandma who both died of pancreatic cancer.

My husband has a stent with a biliary drain bag. It has been working well. We have had it replaced a couple of times. Lately we have noticed bile seeping out where the tube comes out of his abdomen. He also seems a little jaundice. Has anybody else had a problem like this?

My second question is sensitive. My husband for months has told me he is not ready to die. Today he has told me he is ready and wants to die because he is tired. Someone told me that  most people go pretty fast once the say they are ready. I know everybody is different, but has anybody had any experience with this? I hate to see him suffer so much.

We do have hospice coming in once a week right now. They're not saying much as they are always so positive. I just don't know if we are coming to the end. He seems to sleep all the time and has his days and nights mixed up. I appreciate any and all responses and advice.

Thanks, Shelley

Re: Sensitive Questions

Dear Shellina,

This must be immensely difficult for you and you are so brave for coming here and asking.  To give you some background, my 41 year old sister died in March 5 months after being diagnosed.

She had an external drain that started to leak from the drain site.  Her doctor re-scanned her to see if it was blocked or needed repositioned but it couldn't.  It ended up with little bag over it to hold the bile.  I would get hospice team to look at it in the first instance and sort out a dressing or bag at the drain site  as you don't want the bile irritating your husbands skin. 

There is no perfect science to knowing when a loved one will die but I do believe that nurses and doctors experienced in looking after those that are dying can give you a good indication.  When my sister was told she had at best 2 months to live, I said to her Gp and nurse specialist that she didn't - she had 2 weeks -and when pressed, they both agreed.  She died 2 weeks later. 

In her last few days  I felt she was hanging on and I was desperate to say to her it was OK give in.  In the end it was the humanist celebrant, who on the Friday afternoon after discussing with my sister what she did and did not want at her funeral, said to her she could relax now as she had done everything she needed to.  I thanked the celebrant for saying that to her.   The next morning my sisters passing started and we all spent tHe next 2 days by her side and she died on the Sunday. 

Use this precious time do say and do all the things that you both want to so that if your husbands decline is rapid, you won't regret not saying and doing those special things.  Please use the forum and everyone here and I am happy to answer anything about a loved one dying if it helps you.

Clare

In the stars now . . . .

Re: Sensitive Questions

Hi Shelley,
First of all, let me say how sorry I am that you and your husband are going through this. It is a tough time no doubt.  My husband passed away in March and he felt the same way for about the last month.  He would sometimes say "I think today's the day", but it wouldn't be.  At the end, his ammonia level was so high, he was almost non-verbal.  It's so hard seeing someone in liver failure.  I knew what was coming as I'd seen patients in this condition (I'm a nurse), but never anyone I was so close to. When the end came, I was devastated for myself, but happy for him.  Stay strong, get as much outside help as you can, and do everything in your power to make him as comfortable as possible. Feel free to come here and vent your frustrations, it helps.
Dianne

4 (edited by Lainy Sun, 07 Jul 2013 08:42:10)

Re: Sensitive Questions

SENSITIVE:

Dear Shel,  I have privately walked members from the Board through this difficult time by email. I have an article about what to look for as the end of this unwanted journey approaches. I do believe that oddly enough "the time" is when the patient says so. I believe that your hubby knows what is coming and by saying it is his way of accepting it. This is the time to make those last memories and remember that hearing is the last thing to go. I told Teddy all day that it was OK to go to his peace I loved him and for him most important was to hear that I would be OK. From about Noon to 9PM every time I said it he put his fingers to his ears or held up his hand like a stop sign. He was not ready! About 830PM my Daughter called 2 of the Grandsons (14 & 16 at the time)  who were home and told them Papa is Passing but he is ok and you don't need to come if you don't want to, he knows how much you love him. 15 minutes later they appeared and Robin said, "Papa, Kyle and Brandon are here to see you" and he passed 3 minutes later. I feel he didn't want Robin and I to be alone and she felt it was his last life lesson for the boys. Either way it worked. Do not be afraid, I have to say some awesome things happened that made us feel privileged to be there, I know some privilege, but it gave us a real feeling that now Teddy was going to be just fine. Let me know if you would like me to send you that list. Hang in and be strong. I will try to answer all questions privately, please keep us posted as we are all here for you.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Sensitive Questions

Thank you all for your responses. Since you have all been through this, I knew I would get the best info and advice. Yes Lainy, could you please email the article to me?

Re: Sensitive Questions

Shel, I just sent it. If you would like my phone number, I don't mind sending that either. I am home most of the time and beginning to feel like my Computer is my roommate! At least we get along, no arguments. LOL

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Sensitive Questions

Dear Shelley,

I am very sorry for you and your dear husband. It must be such a difficult time for both of you right now. My Lauren passed away June 9th, but was not awake for three weeks before. I miss her more each day and I am sorry you must go through this. Just know that I care and will be praying for both of you.

Love,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Sensitive Questions

Pam,

Thank you for your kind words. I know you just lost your sweet Lauren. Like everybody else I followed your blog and prayed each day for her. I am so incredibly sorry for your loss.

Hugs, Shelley