Hospice #6

Many things have changed for the worse this past month or so. Still, I enjoy spending time with Heidi, short visits with friends, and watching the PBS network in the evening.
I find myself feeling tired and listless most of each waking day. I like to sleep for 11-12 hours a night and take a 2 hr. nap in the afternoon. I rely on Heidi to help me get up from both.
Reading regular font books has become more tiring (I’m using Helvetica 22 for ease in composing this draft.)
I think the morphine I take for stomach pain is affecting my comprehension. While trying to read a story about the gold rush, I stumbled upon an ordinary word – “conquer”. I was stumped. It took me until the following morning to remember how to pronounce the word and recall its meaning.
I have pondered a lot the process of “passing away”. I think the journey for me started when my appetite disappeared in July.  This probably explains all my loss of energy. At the end of September, I started taking a small amount (10 mg daily) of morphine for stomach pain. I can tell that the impact of this drug in my brain is accumulating, affecting my speech and reasoning. The morphine also has some difficult side-effects.  Occasionally, I have af night or a day of steady pain, but still I am thankful that most of my days are pain free. I haven’t thought about where things go from here.  We had a quiet Thanksgiving at home, but I’m glad to say I can still enjoy a glass of holiday egg nog with friends.  Sunday Heidi was happy to make chocolate ginger bread cookies with our grandkids.

Kids and product

The photo shows the fruits of their labor.

Hospice #5

Hospice-to-regular Medicare back-to-Hospice – can be complicated
Medicare will pay many (if not all) expenses of patients enrolled in hospice. But, patients cannot be receiving hospice services and continuing to receive treatment services from his/her previous medical team – consultation, yes; treatment, no. In early August we gave up on my being physically able to do the biopsy to determine if I had the genetic structure to try Lynparza. We joined hospice on August 11.
On August 26 the chief sent us a test kit for the new biopsy-free method might give us the same information. We quickly signed the paper to “de-enroll” from hospice (August 29) and took the test kit to the hospital lab for processing. We did not realize that it be nearly a month before our “de-enrollment” paperwork would clear through the Medicare system. We also kept three previously made consultation appointments with the “old” medical team. You can imagine how many Medicare claims were denied in the 6 weeks following – all of which needed
calls to various providers in order to get them paid.
Lesson: if you must de-enroll from hospice, presumably for a defined period of time, be careful the billing depts. at your treatment providers are well aware.

Family visits
We were so happy when my sister Ginny called from Berkeley to say that she could come for a visit the weekend of October 23rd. Heidi and I enjoyed hearing about Ginny and husband Don’s trip to Portugal. She will return at Thanksgiving time to visit daughter and family. We are hoping to have another rendezvous then.

On a warm October 30th, we were visited by some spooks from Leesburg.

Happy Hallowe’en to all!

Love, Heidi and Bob

Local spooks - Lexi, Luke, and Kate

Local spooks – Lexi, Luke, and Kate

Ginny and Bob, September 24, 2016

Ginny and Bob, September 24, 2016

Hospice#4

Now that I’ve described some of my recent daily routine, I’d like to change subjects, to wit; how much longer should I expect to lie here in this hospital bed? I have felt increasingly tired all summer long, so tired I sometimes felt I might take my last breath at any minute. But, I very much wanted to see Kathy, Todd, Emily and Paula once again. Maybe those desires helped me stick with the program until the kids arrived. It was simply delightful for me they staggered their visits  throughout those two weeks! At two&one-half Emily is as always tearing around exploring new things she picks up. Kathy’s visit was thankfully several days longer, and she was a great help to Heidi with the “patient.”  Kathy had great fun videoing my reminiscing of Boy Scout and my Marine Corps days.

Kathy & Bob

Kathy & Bob in mid-October 2016

My voice has grown much weaker. It takes energy to talk, in-person or on the telephone. We use a wheel chair to move me from my hospital bed to my recliner chair and back again. I have just enough arm strength to “help” move my body in and out of the wheel chair. An aide comes from Hospice twice a week to give me a sponge bath. The small dose of morphine, taken just before bedtime, keeps my stomach pain under control for 24 hours. But, the opioid interferes with my vision and causes constipation. My lack of appetite continues.  Heidi does come up with things that do taste good once I start eating them.  She is my angel.