Hospice 7- The Nurse says I’m stable

h,b,kids

Bob, Heidi and the Leesburg youngsters at Christmas lunch on December 23, 2016

Thursday, the hospice nurse declared me “stable”. We do have a routine we follow most days, but she meant that she saw color in my face.

Pain
I feel very little pain. I’m taking just one-half the morphine dose I started with in September. It is doing the job and seems to affect my sleep not at all.

Meals
I am down to eating mostly liquids: soup broth, hot tea, hot chocolate, water, pudding, stewed prunes, canned pears or peaches. It seems my stomach is not capable of digesting much.
Medication

The two medications Hospice prescribed for my irregularity problem seem to be working well. Hospice also prescribed Lorezapam, a liquid form of Ativan, for anxiety. It is also used for a sleep aid. I don’t think I need the sleep aid, at least not yet. So,we are slowly lowering the dose; maybe I can stop it completely.

Sleep
I have very few complaints about my sleeping. I can lie comfortably on my back now after many years of pain from lumbar stenosis pain when lying on my back. I am very grateful for that mysterious turn of events. I’m in bed by 9 pm and sleep until 8 am the next day.Then, I usually take a 2 hour afternoon nap.

Mentally
In spite of my antidepressant, I often feel down, especially on cloudy days. There are many things I can no longer do. When I allow myself to brood on some of these, it really takes me down. I know I’m walking into a blind canyon, and I do my best to ignore that far-off fact.  So, I try to think of some near term activity to anticipate and concentrate on what’s positive about today.

Activities
When I’m up and alert, I read the front section of the Post, or at least the headlines therein, a magazine article, or a chapter in a library  book. I watch the TV news in the evening. We also watch programs we’ve recorded, e.g., NOVA. I’m house-bound, especially in the winter cold. So, we enjoy visits from friends and/or neighbors at happy hour time. My drink of choice these days is a small cup of hot chocolate. I’m still getting around on my walker in spite of my legs getting weaker.

Our Leesburg family came for a Christmas lunch and gifts on Friday.  Heidi made cinnamon rolls, a favorite, for breakfast Christmas morning. And, one of our wonderful neighbors shared plates from their Christmas Day dinner.

Outlook
This Christmas holiday season is a time we both have much to be thankful for.
Happy holidays to one and all!
Love, Heidi and Bob

xmas-bkfast

Christmas morning breakfast with seasonal favorite cinnamon roll.

 

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