If you have read my column in the past year, you know that my mother has been ill with congestive heart failure and emphysema. In "Patricia’s Determination" in the 2004 August/September issue of Unity News and Views, I wrote of her miraculous recovery after being declared “terminal,” and my hope that the attitude boost she received from beating the reaper would be permanent. It wasn’t, and as her health deteriorated further, she became even more difficult. By September, with a daily crisis to handle, I’d had more than I could cope with. I told her she had to either get a housekeeper/nurse, or look at the dreaded “retirement living” she had resisted for so long. She hired a local woman who describes herself as “a country redneck” and their relationship as, “your mama is always trying to make a dandy outa me.” They fought, laughed, and became fast friends. Mom did all she could to get “Deb” to eschew her jeans and tee shirts. Debbie remained true to herself, but enjoyed the fruits of working for mom and the nice clothes she gave to her to wear when they went out to eat. No one went out with Patricia in jeans. Mom was the fashion maven; we all had to follow her command, or it was a reflection upon her.

My mother died on April 23rd, after a six-week illness. Her eyes had weakened from macular degeneration to the point where she was listening to books on tape offered by the state library. If you are unaware of this service, you can request a catalog of books on tape and they will send you the player and tapes you select—sometimes at such a giddying rate that my mother would have stacks of them waiting to be heard. Newsweek also sent her a refund of her subscription when notified of her loss of eyesight, and free tapes of the weekly magazine began arriving in the mail.

We learned so much about illness and dying in such a short time. Before these long six weeks, I thought we had things under control. There was so much we did not know, which I want to share with you.

My mother was a very competent woman fiscally. She was an accountant during my youth. She had written a trust in California, her first smart move. If you have a trust, your family does not have to go through probate. She had also a Health Care Power of Attorney drafted, naming me as executrix of both. I had not read either since then. When the hospital requested a copy of the latter, I reread it and discovered the latter had expired in 1997. When I mentioned it to the social worker, she thanked me as she had not looked closely, never expecting another state would have limits on such a document. So, we had to get a notary and witnesses and a North Carolina Living Will to sign while Patricia was in the hospital.

Actually, it was a good thing. I was able to ascertain what “DNR”, “Do Not Resuscitate” meant for an 87 year old. The doctor told me, “You wouldn’t be doing her any favors. 90% of people who are resuscitated die in three months anyhow.” I knew that she did not want a feeding tube, but was able to ask her about hydration, IV’s, and other assorted procedures that are automatically followed but may disturb the comfort level of the patient.

Having survived the bout with death last year, mom kept hoping for a miracle. A week after our discussion, when she began her downhill spiral, she became paranoid and began hallucinating. Having had this clear discussion saved me from my own fears, guilt, and second-guessing. However, it was still hard to make the decisions I had to make.

I had been a social worker for our county in the 1990’s for 18 months. I did placements for the elderly and inspected rest homes. I knew something about the process when the hospital informed me I needed to find a nursing home after mom had been in the hospital a month. Her lung had been “stabilized,” not cleared, and the social worker said the doctor would release her on Monday. I spent two days visiting 11 homes in a 25-mile radius. The Internet Medicare Website reported the deficiencies of the homes, so I could rule out those written up for abuse or too many pressure sores. But with the visits, I found that you cannot rely on paper to tell the whole story. Homes with perfect scores might have 15-20 people in wheelchairs sitting in hallways and an administrator who, when asked for help getting back to her room by a resident replied, “I’m busy. Your room is at the end of the hall.” I needed no more of her time for that tour. For me, the very worst aspect of this search was the fact that the good homes were full, and I had to hope someone would die so my mother could have their bed. Someone did.

Mama was a floozy to the end. She had her cosmetologist visit the hospital to paint her inch long acrylic nails iridescent purple and silver. When one of her friends suggested they be cut so she could run her tape player by herself, she was incensed. She'd had those nails for thirty years and was not giving them up.

The day she was released she was in bad shape, shivering, running a fever, and having explosive bowel movements. By that evening, the nursing home wanted to send her back to the hospital. I requested they send her to Asheville instead, as she had no faith in the local hospital and had begged me to “get her out of there.” The admitting doctor at St. Joseph’s was wonderful and connected us with Palliative Care. I had never heard of it, but it is a service that bridges the gap between Hospice and the hospital which helps the family and patient understand what is happening to them and how that impacts their choices. As the doctor said to Ed when he asked what she would do, “Send her back to the home and make her comfortable. I have done this for 21 years and I see so many people try to keep their loved ones alive for their own feelings. It is misguided good intentions.” Mom began a week of hallucinations, on and off. That was the hardest for me to cope with, and Chad and Jana helped me understand the concept of “Mother as Guru”: Patricia was teaching me unconditional love in one of its hardest manifestations.

When mother finally was cognizant enough to realize life was not going to get any better than a nursing home—her long-held fear—she looked at me, smiled, and asked me to help her die. I climbed onto the bed and held her in my arms. “We’re not doing anything to keep you here. You aren’t hooked up to any machines. The nurse can give you morphine for the pain, but you have to do the next step yourself. I can’t walk you across; you have to find your own path.” Within two hours, she had begun the “chain-stoke” breathing that led the social worker to take me aside and tell me mom was dying and that she would call Ed. It was Wednesday; she died on Saturday. I find that a testament to her strong will. Once she decided she was going, there was no stopping her. I had hoped for an epiphany, or a spiritual connection with her in death. She stayed in her own world. Her epitaph was truly, “I did it my way.”

This past Saturday we held a Catholic mass, followed by an Irish Wake, to celebrate Patricia’s life as a vibrant, unique character who loved to be the center of attention and tell the most outrageous story. It was a time of laughter, tears, food, drink, stories, and love. A piper played as we followed in procession to our pond, Lyric driving mom’s 1967 snow leopard “PURR” Datsun and me sitting shot-gun, holding my mother in her urn for her final ride. At the dock, my brother and I got into the canoe. I paddled by the island, which was covered in white, red, and lavender azalea blooms, Garth cast our mother’s ashes into the water. The pipes lamented “Amazing Grace” as the kilt-clad men raised their swords. We bid Patricia goodbye.

Afterward, as I walked back up the road to her house, the rain began. I could see her in heaven, telling St. Peter he couldn’t rain on her parade. But her parade was over, and the healing spiritual experience I had been looking for had begun. ~Gabrielle Thompson lives with her husband Ed and daughter Lyric in the mountains of western NC at Eco-Cove, a 117 acre wildlife sanctuary. She has a degree in Anthropology and is Coordinator of Library Services at McDowell Technical Community College. Previously she helped Ed build, sail, and charter the 75’ schooner, SATORI for 14 years in the Virgin Islands. She is a freelance writer and has written 2 unpublished novels. In Dec. 2002, one of her articles was published in Moments of Grace magazine, with an introduction by Neale Donald Walsch.

~ Gabrielle M. Thompson, 2005
© 2005 Gabrielle M. Thompson