What to Expect

Mom has been on hospice for one and a half years. She has a well-worn pamphlet that I call her Hospice Bible. It is called "Final Days...Sacred Moments: A Guide for Families Facing Terminal Illness." Mom has read and reread her Hospice Bible. She carried it in her orange bag. She underlined and circled. She waited eagerly for symptoms to arise, willing them to arise, announcing each one (real and imagined) with satisfaction.

Because Mom was so well-versed, I don't think I had read the Hospice Bible until this week. As she began her precipitous decline, I turned to the page that promised to give me a "Summary of What You Can Expect."

One to two months prior to death:
*Decreased appetite and food intake.
*Increase in hours spent sleeping.
*Withdrawal from activities and people previously enjoyed.

That describes where Mom has been for a while. Toddler sized meals, awake 4-6 hours out of 24, not listening to Rush or watching Hannity regularly. But then soon after Gayle arrived, Mom changed. When I finally picked up the Hospice Bible, it was clear Mom had moved into the next category.

One to two weeks prior to death:
*Disorientation, including agitation, restlessness, confusion.
*Changes in heart rate and breathing patterns.
*Decreased blood pressure.
*Changes in skin color and temperature.
*Not eating, reduced fluid intake.
*Further increase in sleep time but may be arousable.
*Congestion or noisy breathing.

Yesterday Mom had each one of those symptoms, every last one. And we thought, okay, one to two weeks. Then today she changed again.

Two days to hours prior to death:
*Increase in intensity of symptoms listed above.
*Surge of energy or "rally."
*Irregular breathing, sometimes with significant pausing, called apnea.
*Restlessness.
*Non-responsiveness.
*Mottling may become more apparent.
*Pulse is weak and difficult to find.

Today Mom was only awake twice, about 45 minutes each time. During her first time awake, Dave and I and all four kids were able to speak to her and make eye contact. During her second time awake, Gayle played her flute for Mom. She barely responded to us, mostly staring. We think she had her "rally" yesterday afternoon. Her breathing is shallow and her heart flutters like a little bird.

Cassandra came today and washed and changed Mom. She advised us that it would now take two people to change and move Mom. After a short trip out to the ReStore with Dave this morning, I've stayed home. I just feel like I should be here.

I can't imagine Mom making it through the night. How long can her partially functioning heart flutter on? How long can her metastacized lungs draw breath? How long can her wasted body hold life? She is super tough, but it looks like the fight is almost over, the race almost run. Please, Jesus, let her fly away to You.