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April 14, 2008
A Response To Carolyn Cassin Featured Speaker at the 2008 CPSP Plenary By Fred D. Wilcoxson, Ph.D
Carolyn Cassin spoke to the facts and myths of Hospice. She gave us statistics and information about the state of the US regarding Hospice and Hospice legislation. As a matter of fact her PowerPoint presentation was perfect for the Ethics Committee meeting I chaired this week. She spoke to the dilemma of under utilized availability of hospice services. Carolyn spoke to the need to educate physicians, nurses, patients, and families to the fact that Hospice is not about dying, it is about living. She emphasized the need for earlier referral and the use of referrals to specialists in Palliative and Hospice Medicine. Carolyn spoke with a passion that made her presentation great.
The problem is that I can get her PowerPoint but I can’t take her with me each time I present the information. I am sure that others can relate to this dilemma. There was though another reason that I was so impressed with what Carolyn had to say. You see William I. Wilcoxson, 89, passed away Friday February 1, 2008. His story can be told with passion, even if you didn’t know him personally.
In early December 2006 my dad, Bill Wilcoxson, had an episode where he was too weak to get out of bed. Against his wishes, but in his best interest, he was transported by EMS to the hospital. He was found to have exacerbation of COPD due to an upper respiratory infection that had triggered dementia symptoms. After a five day stay in the hospital it was determined that he should be sent to a skilled nursing facility for rehab.
Dad was not keen on the idea of going to the physical therapy room and playing catch with a beach ball and being walked with a strap around his waist. He also was upset by the indignity of a precautionary diaper, since he didn’t make it to the bathroom in time once. After few days in the facility his first room mate died. He began to give up. He refused to go to therapy, eat, and even attempt to make it to the bathroom.
Christmas 2006 was not a merry one for him or mom. Even with visits from great grandchildren, he was totally uninterested. When his second room mate died, he gave up completely.
Like Marybeth Sammons said in her story in Eric and Sharon Langshur’s We Carry Each Other: “But though I am good at caring for many others, I am paralyzed when it comes to knowing what to do for my parents. I proclaim myself a struggling novice and brutal failure… I’m scared watching my parents get sick and old.” Regardless I had to do something or my dad was going just lay there and die.
I went to my dad and told him that I loved him and that I wanted to know what I could do or what he wanted that I could accomplish for him. He looked at me and firmly and clearly stated: “I want to go home. I want to sit in my chair and mostly sleep. When I want ice cream, I want someone to give it to me.”
I left shaking my head and thinking: how in the world could my mother be the caregiver for my dad when he was totally dependent, in a diaper, won’t eat, and has refused to walk for weeks. I thought of mustering my sister and our children to form a schedule to help make it happen. Then I pondered whether or not Hospice could possibly help. I contacted my friends from Vitas Hospice; I see them nearly every day in the hospital where I work. I told them what was going on and asked what I could do. Shockingly, but it was a joyous shock, they looked at me and said ‘no problem’ we can make that happen. Within two days, they had visited with my mother, arranged for all the necessary home equipment, sent a physician to evaluate my dad, and arranged for his transportation home. Added to all his chronic diagnosis was ‘adult failure to thrive.’
The rest of the story is the fun part to write. It is for the Wilcoxson family a happy ending. For my dad hospice was not about dying. Within a few days of being at home he got up from his chair and walked the few steps (assisted at first) to the table to eat. It wasn’t long until he was out of the diapers. Over the next fourteen months he had his good days and his bad days. He got to the point where he would ride with my mother to the Post Office, bank, and grocery store where he sat in the car a few minutes while she picked up what she needed. On one occasion he surprised everyone by getting out of the car and pumping gas. He enjoyed another wedding anniversary, Valentine’s Day, a birthday, Easter, Fourth of July, Thanksgiving, Christmas, and New Years. He enjoyed the birth of two great granddaughters and was able to hold each of them. He enjoyed seeing and being with his family and we certainly enjoyed being with him.
Late in January of 2008 dad went on ‘crisis care’ twice. On February 1, 2008 a little before noon he looked up at the ceiling and took his last breath. My mom was next to him, holding his hand and talking to him. He died without pain, peacefully, in his own home, and with dignity.
Vitas Hospice continues to take care of the emotional and bereavement needs of my mother. My girls and my niece will be taking some of dad’s clothes to hospice where volunteers will make teddy bears out of those clothes as remembrances.
And for me, my friends from Vitas come by on a regular basis and make sure that I am taking care of myself. Writing this is a part of my grieving process.
My hope is that some one will read this or tell this story so that someone can become involved with hospice in time for them to experience the gift of living with their loved one just one more day, one more week, or one more month. I hope they can give their loved one a pain free death, in the environment that is comfortable to them, and make their death be with dignity.
Thank you hospice for all that you do.
__________________________________________
Chaplain Fred D. Wilcoxson, Ph.D., PC, BCCC
Supervisor Pastoral Care
Health Central
407-296-1815
Convener Orlando Chapter
College of Pastoral Supervision and Psychotherapy
Posted by Perry Miller, Editor at April 14, 2008 9:45 PM