"Hate" is a four-letter word

Friday morning started with me calling our case manager to let her know our decision to transition Ed to inpatient hospice.  I felt bad making this move, like it was raising the white, surrender flag.  I had talked to Ed Wednesday and he agreed this was our next step.  But it doesn't make it any easier.  At 3 PM the hospice social worker came to visit us and I signed the necessary paperwork.  It reminded me of that first day when we went to see Dr. Bowers and stepped over the threshold into the Hampshire Hemotology Oncology--into the world of cancer.  And now here I am signing my name on a piece of paper and stepping into the world of hospice.  I hate it!  But I know where this path is leading and I know my priority is Ed's care and comfort.  But I still hate it!

Of course Friday morning also started with Boston and the surrounding communities in lockdown and so my thoughts turned immediately to Dan.  Thankfully he heard the news on the radio when he woke up, so he knew to stay put and not go anywhere.  At least I know he was at his apartment and safe.  Unfortunately, because the lockdown was all day, Dan did not come home Friday night as planned.  But again, he was safe and that was what mattered most.

Friday also marked what would have been my brother's 52nd birthday.  My sister counted that it has been 40 days since he passed.  Is this number significant?  Like 40 days of Lent where you suffer?  I have no idea.  My sister-in-law also reminded me that today would have been her 39th anniversary but her husband passed away 5 years ago.  I do not like April 19th anymore.

So as my day was starting on such a negative note, when I get to the hospital they had given Ed some solid food for breakfast.  He ate some of the scrambled eggs, a few bites of toast, orange juice, Ensure, milk, and pudding.  I'm happy that he felt like eating.  At lunchtime, he had some tortellini soup (ate mostly the broth) and some mashed potatoes and sipped the Ensure.  Dinner he wasn't interested in at all.

We changed his colostomy bag today and they also drained 1 liter of fluid from his abdomen.  We decided not to drain whatever they can, but instead limit it to 1 liter since this gives Ed some comfort versus draining more that causes more discomfort.

As I mentioned, at 3 PM the Hospice social worker visited and explained things to us and I signed the necessary paperwork.  Ed mostly listened since he doesn't have his voice.  Soon thereafter, the hospice nurse came in to see us.  Both very nice woman.  The nurse, Jill, checked Ed's vitals and I left the room so that she could talk to him.  I didn't really know what Ed understood at this time.  We hadn't talked about it in days and I wasn't sure he understood how much time he had left.  Although I don't know all they talked about, she did let him know we were talking days/weeks and that his body is preparing itself.  I know it makes him sad.  And I hate (there's that word again...a word I don't usually ever use) that he has difficulty talking because I want him to share his feelings with me or with others.  Which I laugh about as I write because Ed is a typical man who doesn't talk much about "feelings".  So I don't know why I would expect him to change now.

So I'll cherish these last "days/weeks" and be by his side and be sure he knows how much I love him.  And although there are times I don't want to go on without him, I know he worries about me and Dan and so I will let him know I will be alright because that's what I need to do for him.  And that's love which is much stronger than "hate"...