Posted in End-Of-Life Care

The Truth is Not Everyone Survives

The saying goes, “The only thing you have to do is pay taxes, and die”.  I guess that’s a reality…I wish it were more.  Unfortunately, the truth is that not everyone who is diagnosed with a chronic or other life-altering illness will live to cherish their golden years.  It can be for various reasons; the diagnosis was discovered to late, your disease doesn’t respond to treatment, or you experience the domino effect where you don’t die from the illness you were diagnosed with but from a complication related to it.

Our culture doesn’t discuss death.  I remember in my junior year in high school our health class was on “death and dying”.  I’m not sure why they were talking t a bunch of teenagers about death and dying when they believe their invincible.  For most of us in the late 20th and 21st century, don’t experience the death of an adult until we’re older.  Our first experience with death is a pet and that can be very traumatic.  However, it certainly doesn’t have the long-term effects of a loved one dying.

I want to talk about end-of-life care because November is National Hospice Month.  Hospice started in England as a way to provide care for those in the end-stage of life.  The requirement for hospice is that your doctor will certify that you have less than six months to live.  Once you enter hospice they stop treatment in hopes of healing the illness.  Medications that are treatment specific are given if they alleviate pain and suffering, but otherwise treatment is stopped. 

Hospice offers support, comfort, and pain management to the individual and support and education to the family.  There are both in-patient hospices and home hospice depending on where you live.  Because we’re so afraid of the dying process and hold on to the glimmer of possibility that we’ll miraculously get well, hospice care if under utilized.  In England the average length of time a person is enrolled in hospice is 17 days; in the United States the average is 7 days.

Have you made your wishes known to others about your end-of-life care?  Have those in your inner circle been willing to hear you talk about death and dying?  Are you willing to let go of what might be the illusion that you’ll walk away from your illness alive and well?  I know that many believe that hospice is the message of defeat.  Actually I believe hospice is the message of triumph.  It puts you back in control of your own life.  It gives you options so that you can be cared for with dignity and compassion.  It gives you the freedom to make conscious choice about how you’ll spend the days you have alive.

There are some amazing stories in hospice about the six month rule.  I was facilitating a support group for cancer patients and a woman in the group in her late 70’s early 80’s had a rare sarcoma.  She’d been through treatment for over a year and then made the decision to go on hospice.  She lived six months and they extended her hospice benefits.  One day she came to group and announced that she had graduated out of hospice.  In order for her to retain her hospice benefits on Medicare in the months to come; she’d have to leave the hospice program until she was “ready” for it.  Can you imagine graduating out of hospice?

During the month of November when we celebrate National Hospice Month; it may be a good time to look at what hospice has to offer.  Know your options.  Give yourself the gift of knowledge and understanding about hospice.  Allow yourself to consider the possibility that if you’re considering stopping treatment, what options will provide you with the highest quality-of-life with the time you have remaining.

I wish you health and healing, but I also want you to recognize the reality of life…that is no one gets out alive.  Find out how through hospice you can maintain control of your care with a little help from those who understand end-of-life care.

Posted in Caregiving

We’re All On an Odyssey

Welcome to Caregiver Friday!!

Over the past few months I’ve been spending time reading and studying about Odysseus, the story of “The Odyssey”.  If you haven’t explored it, it’s a wonderful story and so applicable to life today which to many would be a surprise.  The lessons are explored by many authors who take their turns exploring the meaning behind the story and how it applies to their particular discipline.

Tonight I finished Norman Fischer’s book, Sailing Home, a Buddhist perspective of The Odyssey.  I found the book to beautifully written and the meditations were good ways to understand the work on a deeper level.  At the end of the book Fischer talks about the point in our lives when we “come home”.  For many facing a health challenge you may be thinking this is the point of death, but he takes it much deeper because his perspective is that there is no such thing as death, only life in the moment.

The part that caught my attention and that I want to share with you is a story he tells about a friend who is a hospice social worker.  The hospice worker asked Fischer, “How do you prepare for death?”  He finally answered the following, “So hospice work is about living, appreciating living, at life’s most crucial and poignant moments.”  Can you think of anything more eloquent? 

Caregiving is about sharing those tough moments at “life’s most crucial and poignant moments”.  It’s the ability to share a moment with someone when you are both at your most vulnerable.  There’s an intimacy that develops even deeper than any physical intimacy you could imagine.  As a caregiver, to develop the capacity to be completely naked emotionally and spiritually is an amazing journey.  It’s a gift that provides you and the person you’re caring for hope in love, togetherness, and compassion.