My Husband and Cholangiocarcinoma – Part 2

It’s with a sad and heavy heart that I post this today. Home Health care came to the house on Friday and after 5 minutes with Tom, they stated that he needed Hospice and called in the hospice team.

Within the hour, hospice was here. He is having increasing apnea spells and sleeping more and more. The last time he ate anything was Thursday when he came home for the hospital, a small bowl of breakfast cereal. Since then he has only drank water or juice mostly. On Friday he drank 1/2 of a boost and drank the other 1/2 on Saturday.

When I asked the Hospice nurse (after she had assessed him), how much time she thought he had left. Her response was “If you walked into that room, would you be surprised if he was not breathing? My answer was No. She then stated “I am not God, but with what I’m seeing now, I would say that he has hours or days, but not weeks.” She has done hospice for about 30 years.

My son and daughter in law drove here from Tomah on Wednesday and spent the night. My Daugher and son in law and 3 grandchilldren will get here later this afternoon. All three of Tom’s kids have spent a lot of hours with him. His son is still in denial and does not believe that his father will pass on – no matter how many different ways I tell him that his life here on earth will soon be gone.

My daughter Brianne has been here by my side since she learned that ‘her dad’ is on Hospice. She is a stay at home mom and has little Tommy with her. He certainly delights me and helps “Ama” with my sadness. Brianne babysits other children at home and will have to go home on Monday after I’m done with work. That will be hard for her to do if Tom is still here with us. She wants to be here with her dad when he passes.

Tom’s daughter Holly spent Friday looking after him while I worked, but at the end of the day, she said “I don’t know if I can stay, it’s creepy and morbid and I can’t deal with it. She and her husband had been planning to spend the weekend and get the Christms trees up. After she left Tom kept asking where Holly and Derek were and was confused as to why they were not here. I explained that she was having a hard time dealing with everything and that we would get the trees up over the week. Later in the day, the did show up along with two of the older grandkids. Tom’s son and grandson and nephew came later in the day and spent about an hour with him then left. Tom’s daughter Kim also came and was here for quite some time.

My grand daughter Courtney who is a CNA was at the hospital for hours when he was inpatient, and also has been here with her Papa for both Friday evening and all day Saturday until she had to leave for work.

At one point Tom’s daughter said to me, I think there are too many people here – I told her that this was my home and I want everyone here for moral support for ME. She thought that everyone was being too noisy and it was distribing Tom so I said OK, I’ll close the french doors, then just asked everyone to lower their voices.

I did also call his best friend Dennis and told him what condition Tom was in – he is going to do the eulogy (sp?) at his furneral service. Whe he and his wife showed up, only Briane, Little Tommy and I were here, everyone else had left to go home. When he came in and gave me a big hug, he started crying and I told him no crying cause he was going to make me cry! He said he has never cried so much since he got my call. He’s started writing what he wants to say for the eulogy and as writes it he cries so he writes notes to himself on the parts that he knows he will start tearing up (BIG BREATH!) He asked for some things with humor that he could add so I gave him a few stories that he will add. I aske him to let his Mom and Dad know cause Tom and I are also very close with them. Deacon Vincent, Dennis’s brother will be doing the funeral service.

I am getting physically exhausted and have a kidney stone that is starting to move so I also have intense pain and really should be getting medical attention for myself, but I refuse to leave his side. I will be here at home working on Monday and Tuesday but I am just moments away and can Instance Message my Supervisor if I need to leave my desk to be with him. Both of my work Supervisors have been wonderful during the past three years and 8 months. If Tom declines more between today and tomorrow I may just call in and take Mon, Tues and Wed off for FMLA. Right now each day is an “Let’s play it by ear” until we have more information on his condition.

I am so sorry for the long post but it helps me wrting this all down and I know that each of my CC family will understand. Please continue with prayers for Tom, but this time I’m asking for prayers for him to have a swift, safe and pain free journey to his life everlasting phase.

I love each and everyone of you (past and present) who have supported both Tom and I along with our journey with Cholangiocarcinoma.

Love and Hugs and a great big THANK YOU to everyone!

Margaret and Tom