End of Life Journal

I wish I had kept better records for a time-line of my mother’s illness as a resource for others. I am constantly researching on the web for the ‘next things I can expect’ on this journey I am experiencing with my mother.

Many of us want to know, “When will this end? How much time does she have left? When should a sit-and-be-with-vigil begin?” I want to be there for her, but there have been so many scares that turned out to be nothing…

I’ll try to briefly summarize my mother’s illness timeline:

January, 2014       diagnosed with IPF

March, 2014       hired geriatric social worker; hired full time live in nurse to assist

May, 2014       Last visit to primary care physician; given 6 months ballpark

Late spring       Enrolled in Visiting Nurse Program: PT, OT, Speech and Behavior support

Summer, 2014       confined to wheelchair; dementia evident; numerous behaviors surfaced

August, 2014       entered Hospice program

October 3              began morphine for comfort

Late October       complete incontinence began

Early November              24 hour care necessary

November 14       asleep, for 3 days, non-verbal, minimal food; first full prescribed dose of morphine; hospice nurse called in to check vitals, BPM dropped to 14 from 20+;

                             Mom called out to her dead father, “Daddy, wait for me!” all night long;

Today I visited. I noticed some reaction to what I said, “Your sister’s coming tomorrow, won’t that be nice?” with eyeball movement, frowns and vulnerable expressions. She also pulled her hands away from my touch more than once, which I thought was interesting. It feels like my mother hates me, even in her dying state. But I can’t believe that’s the case. She’s full of morphine-who knows what she is thinking and feeling?

I also called Hospice today to try to learn what happens after…?

It is not necessary to call 911 or to have the patient/body transferred to a hospital. We no longer have to be ‘pronounced dead’ in NY. The coroner no longer needs to come.

We call Hospice. We call the doctor. The doctor files a report to the city online. Then a death certificate is created. The funeral home orders the certificate and copies for the family. It’s best to get extras for various institutions that will need it.

I post all that I learn in the hope that it will help someone.