You are currently browsing the tag archive for the ‘transparency’ tag.

crestone-eagleMany years ago, a close friend who was a hospice social worker asked me to cover her hospice clients while she was out of town. I told her, “I don’t do death.” She then taught me something that was way beyond my 40 years. “Hospice is not about death, it is about life.” Because I had been experiencing subtle neurological symptoms for years and I feared a degenerative, life-threatening illness building in my body, this concept peaked my curiosity as it assaulted my logic. How could dying be about living? Almost like a Zen koan that evokes enlightenment by showing the inadequacy of the logical mind, I had the next two decades to contemplate this paradox, because two weeks ago I became a client of Hospice del Valle in Alamosa.

When I was considering entering hospice, I received desperate messages from friends around the country who had heard I was actively dying. After all, I must be actively dying if I was in hospice. This is one of the major misconceptions hospice workers encounter. Families usually consider hospice only in the last days or weeks of a person’s chronic or terminal illness, which, in my opinion, does a disservice to the patient and greatly limits the level of care available through the organization. The main purpose of hospice is to provide palliation to chronically, terminally, or seriously ill patients (not expected to live more than six months), which includes attending to their medical, psychological, and spiritual well-being and those of their families.

Living in a culture that is death-phobic, no one wants to mention the H word to a person who still has some life in them. What if hospice involved helping to reduce the suffering of persons deemed terminally ill, but still living for many months? The illness I have been living with is a slow, degenerative illness that has only affected me from the neck down. The effects have been devastating, but from the neck up I have been able to maintain a quality of life that is different, but regenerative in nature. Having been a psychotherapist for thirty years, my work has become more selective but much deeper, given my spiritual growth directly informed by what I consider my “spiritual curriculum.”

I had considered hospice for the last year, but since I was not actively dying, I did not consider it seriously. My most experienced caregiver who had worked ten years in a hospice told me that about 10% of her hospice clients lived an average of two years. Working through the necessary emotional stages, I engaged the closest hospice serving Crestone. To my surprise and tremendous relief, I have received care on every level I could imagine—physical, mental, psychological, and spiritual. They are an interdisciplinary team: MD, RN, CNAs, chaplain, and Family Support liaison. Whereas in home health, improvement needed to be noted, with hospice I could let go and receive care on all levels. This is supporting my dreamtime, depth of meditation, and, I believe, allowing me to begin a conscious death with open communication to my Guides on the other side. Intuitively, I have been able to let go and begin my journey through the Bardos.

I imagine that choosing to work in hospice naturally screens out individuals who are not comfortable “doing death.” My experience with each professional is that their level of skill, compassion, and care have surpassed my high expectations. I now know what my friend was saying; hospice has been about improving my quality of life, even though I can die within days. I can also live months and perhaps a year or so. That was never a possibility before I engaged hospice. I am a natural strategizer or I would never have been able to live alone while quadriplegic, but their expertise has taken this to a new level.

I will likely see 2017, but perhaps I might see 2018! With the help of my care team and now hospice, I can continue to lead my psychotherapy group on Skype, share my growing wisdom gained from living in stillness, and perhaps I’ll live to write another book!

“Out beyond ideas of wrongdoing and right doing, there is a field. I’ll meet you there!” -Rumi

LR5 yell adj bluehue-7833

I am calling hospice today to see if I qualify for their services. Living in the wilderness, there are few services available in our area. Even the home health organization cannot provide outreach for our area anymore. Although I am self-sufficient, occasionally there are issues that are beyond me medically. For example, a few weeks ago my heart rate went to 152 while I was standing, so I was exerting. I didn’t know who to consult.

Making the decision to call hospice came from me. Nobody referred me to them, not the home health organization that regretfully discharge me, not the doctor who agreed to be my primary care doctor, not my caregivers or friends, some of whom are nurses. I don’t think anybody wanted to connect me with THAT organization. So it really wasn’t a matter of neglect or oversight, but perhaps it was more a matter of denial, denial and grief.

We called and although I don’t qualify for their short-term program (hooray), I qualify for their long-term palliative care program. Palliative care is defined as multidisciplinary approach to providing medical care for those with serious illnesses, to relieve pain, symptoms and stress. The administrative person explained the program and said with a doctor’s order, I could sign the paperwork. I explained that I cannot use my hands and she suggested a power of attorney. A power of attorney to me suggests deferring power to another. Doesn’t she realize that is what I have done my whole life?! I refuse to do it now. My suggestion was duct tape, but she didn’t seem to appreciate that.

There is a part of me (by the way, who is in charge much of the time) that really does not take this seriously. When you have a life-threatening illness for as long as I have and have moved through the state of acceptance to a state of transcendence, it is hard to take these circumstances too seriously; I would be way too serious, way too often. I had to give that up.

I feel like someone who is about to go on a beautiful journey and is excited about the adventure. Thinking about my place of departure is not really the point, when you are going on a “pilgrimage.” There is much I will appreciate to not have to deal with, like my in floor radiant heat, the physical discomfort I deal with on a daily basis and the enormous energy it takes to stay proactive, just to stay alive. When I think of my greatest grief, it is in leaving my children and grandchildren. As I open more to the belief that I will not truly be leaving them, what’s the point? It’s not like I can go skiing, swimming or riding anymore. After all, once we all make our transitions, we will be together again.

So I have the dubious distinction of being a member of a group of which I didn’t really want membership, but I am a member of a broader group, a group formed and expressed through LOVE, and I embrace that membership.