Last week was a blur of events and emotions. Mom passed away Monday, October 27, 2008, with her five children, two sisters and one niece surrounding her. Although we have yet to see the death certificate, most likely the causes of death will be complications from Lewy Body Dementia (LBD) including dysphagia (difficulty swallowing) and malnutrition.
My family got Catholic Community Hospice involved on Friday, October 24 after Mom failed a swallowing test the previous day. She suffered from LBD for more than three years. Mom had eaten or drank very little for nearly two weeks. My family declined a feeding tube knowing that Mom would not have wanted to continue suffering. On Friday, Hospice estimated that Mom had between two and seventy-two hours to live. Mom outlived their prediction by three hours.
By the time I arrived in Kansas City early Saturday morning, I was surprised that my siblings and aunts had come to terms with the inevitability of Mom’s death. When I inquired about their change in attitude, they attributed it to the Hospice care team, particularly the volunteers, most of which had suffered similar losses and were grateful for the assistance of Hospice.
When I asked my family to elaborate as to how Hospice had helped, their comments about the volunteers included the following:
· They knelt on the floor right next to Mom, prayed out loud, and talked to her as though she really could understand (hearing is the last sense to go).
· They held her hands when they talked and prayed to her.
· One volunteer called her by her nickname, Margie, not the more formal, Marjorie.
· They told us about the death of their spouses and how Hospice had helped him.
· Compassion was written all over their faces.
· They gave Mom permission to pass on to the next life and described heaven in glorious terms.
· They strongly encouraged each of us to tell Mom how much we loved her, what we appreciated about her and to give her permission to move on to heaven. When one of our aunts initially responded with “I don’t think I can do this,” their answer was “you have to do this.” The Hospice volunteers were able to gently confront my aunt, in a way that she could accept, and she did it.
I never realized that the task of dying was so complicated. The body completes its natural process of shutting down. Throughout the final stages, Mom’s respiration was measured and blood pressure, temperature, and pulse recorded. Mom’s comfort was maximized and pain minimized through Morphine and Ativan administered orally by drops under her tongue. Her breathing pattern was irregular with either big intervals between each breath when she seemed to be not breathing or rapid shallow pant-like breathing. Mom’s hands and arms seemed cool to the touch. The color on her feet and legs turned to purple as the circulation of her blood was decreasing. She seemed to be constantly sleeping and couldn’t be aroused.
The Irish Wake
Last Sunday morning one of the Hospice staff members had learned about Mom’s many visitors since her admission to the Hospice program two days earlier. She scolded me with “you should limit your Mom’s visitors to two at a time.” My immediate response was “this won’t work for our family.” She couldn’t possibly understand our large Irish family with its boisterous culture. We proceeded as though we hadn’t been warned. On Sunday afternoon, we created a party in her room at the nursing home that included story-telling, praying and sing-a-longs. By the end of the day, 29 people had visited Mom. It was an Irish wake, minus the alcohol, and a wonderful opportunity to celebrate Mom’s life before her death.
Mom deteriorated further on Monday. Mom nearly missed hearing farewells from two of her relatives. However, late morning, one of her daughter-in-laws stopped by to say her final goodbye. Also, my husband Tom phoned from Denver to say goodbye and gave her permission to go to the next life in heaven. We put the phone next to Mom’s ear, trusting she could hear.
Before she passed, my brother and I saw one tear falling from her right eye. Her breathing and heartbeat stopped at 3:36 PM, and she died peacefully. I was honored to be part of the dying process. Through Hospice, Mom died with dignity and respect. It’s the only way to go!