Warning: If you are uncomfortable with end-of-life narratives, you should not read this. It is my diary of the time (thus far) that my mother has been in hospice.
Friday, Dec.19th: Mom is extremely ill and the test results are grave. There are no good options. Her quality of life has degraded from awful to hideous in the past few weeks. We all fully support (and agree with) dad’s decision for palliative care. Mom is transported from the hospital via ambulance to Hospice. As he makes sure mom is settled properly, my brother reports that the place ‘reeks with peace’.
Saturday, Dec. 20th. An urgent call from hospice hastened our journey to mom’s bedside. Mom was quickly surrounded by family: her husband, children, many grand-children and assorted in-laws. It was a veritable love-fest. Her room at Hospice is spacious, and there are several common areas and family lounges at Hospice; making it possible for this large group to spend the day together, taking turns at mom’s side. It is also my son’s birthday.
It was a day of tears, laughter and joy. Joy of a shared history and reminiscence of a life well-led. Mom rallied and had several moments of connection with several of us, offering us a few precious smiles and occasional words. She is comfortable and seems to be at peace.
Sunday, Monday, Tuesday: Mom is less and less responsive with fewer moments of connection. Hospice modifies her medicine to reduce troublesome twitches and spasms and apparent bouts of pain. It is difficult to gauge her discomfort or pain level, since she is unable to communicate. My brother spends a couple days and nights at Hospice-on the pull out bed in mom’s room.
Mom is heavily sedated with rare moments of semi-consciousness. We talk to her and hold her hand, not knowing what she can hear or understand. I believe that the Alzheimers contributes to her sense of disorientation and fear during her few wakeful moments–she has no idea where she is or why. Each period of wakefulness may come with the realization that she is very ill and that she is dying. Her comfort is our primary concern.
Wednesday: Christmas Eve I play and sings some traditional Christmas carols on the piano at Hospice; using a very old music book that was once mother’s. Several staff and family members thank me, since they (like me) are at Hospice instead of at church this Christmas eve. Dad spends the night at Hospice. The prolonged waiting and watching is painful for everyone.
Thursday: Christmas Day: The report from early in the morning is that mom is unlikely to survive the day. I bail on my husband’s extended family Christmas and spend the day in Hospice along with my brothers and father. We play Apples to Apples at her bedside. As an answer to the clue ‘pathetic’ I write: “Spending Christmas in Hospice.” I spend an uneventful night in her room. Once again mom has beat the predictions.
Friday, Saturday: One or both of my brothers and dad are with mom throughout the day and nights. I find a need a respite: I visit for a few hours each day. Saturday is Dan’s birthday and we go out for dinner with friends.
We learn more about the effects of dehydration. Mom has not had any fluids (other than a few drops at a time to keep her mouth moist) for over a week. Hospice and other research assures us that there is little or no discomfort — particularly at this stage of the dying process; and particularly when accompanied with pain medication. Thus far there have been three false alarms from the Hospice medical team warning of mom’s imminent death; but she breaths on.
Sunday, Dec. 28: I spend the day at hospice, and as I write this I am preparing to spend another night with mom. The silver lining has been the connection with my dad and brothers throughout the day. Dear God, please let this be over soon. It is more than we can bear.
Monday, Tuesday: More of the same. My brothers and I all have jobs and I have not been spending time with my daughter, Guzzy–we cannot continue to sustain a round the clock vigil. We learn about a volunteer vigil program; and arrange for some volunteers to be with mom at night.