Hospice in place

Dear Family and Friends,

The signs are incontrovertible that the radiation gamble didn't work in Francis' case. Though he ate well tonight, -- and I will describe the precious supper we shared, maybe next time, -- Francis stopped reading the newspaper, eats very little now, and sleeps a lot. And saddest of all, his pain when standing is so insupportable, he spends all day in bed. Thank God he's comfortable there! OR, in order to escape the increasing pain when standing he must take 4 extra doses of dilaudid (a morphine derivative) from his pump before getting up. And that takes exactly 40 minutes.

Francis' bed is right next to this computer desk where I was sitting this afternoon typing his instructions for the financial tasks he used to do (though Lee is guiding me here.) Often stopping to talk, -- to love him with my eyes, and he me with his, -- I was startled for a moment because he seemed to look so well! Only for the moment it was as if he weren't sick! It made me heartsick to realize he is!

So there are these flips of the heart where the reality of our situation shifts into a sense of unreality. Yet, heartbreaking as it is, we are at peace with what is.

Since last Monday morning we've hired Maria, our neighbor up the street, to come during the so far busiest time, from 8:30 to 10:30 AM. She not only assists me so I can wait on Francis, but insists I eat breakfast too! Maria also takes care of the chickens, the dishes, the laundry, -- everything to free me to be with Francis. She's also funny, very efficient and smart with experience in her background of being a secretary and an EMT! We love Maria already. And the chickens do too.

Late last week we signed papers making Francis' entry into VNA's Hospice care official. Christine Turner their highly respected palliative care manager spent three hours meeting with us in our home. It was as productive a meeting as the one we had this morning with Pam Shay, Francis' primary hospice nurse, a woman of long experience and great compassion.

Pam unpacked medications that were delivered to our door yesterday morning (since Hospice pays now for those related to cancer,) opened the "Urgent Symptoms Management -- Hospice Pharmacia ComfortPak," and explained the uses of each medication. It was reassuring learning we have on hand what is needed. If or when certain symptoms happen the medications in this "ComfortPak" would be utilized under the guidance of a nurse through a phone call or visit, day or night.

So the Hospice gameplan will be in full swing tomorrow, Monday, when we see and talk with the two Anne's at VNA, one a Social Worker and the other the Coordinator of Volunteers.

In addition to the trained Hospice Volunteers provided who will come twice a week for a total of four hours, a good friend, Elinor Redmond helped me yesterday put out an invitation through the lotsahelpinghands.com website to solicit our own additional volunteers. That way someone will come here every day, 7 days a week, from 3:00 to 5:00 pm specifically so I can rest or do yoga.

I learned from a long conversation with a close friend, Dr. Ann Lemire a few days ago that the most common reason end of life patients go to Hospice House or to the hospital when the end comes, is that caregivers can no longer manage at home. It's usually not lack of skill, but exhaustion. Ann said: "Taking care of yourself IS taking care of Francis."

I am now doubly determined to get the rest I need so that I can accompany Francis -- at home -- to the very threshold of his completion, of his fulfillment,... and of his arrival.

Elaine