People are usually wowed by my revelation that I’m a hospice volunteer, more than likely following that reaction with “boy I could never do that.” They ascribe all sorts of saintly attributes to me which is uncomfortable, because they’re not true (ask my husband). What is true is the following list … in no particular order … at this time of lists.
I receive much more than I give.
Time and receptivity is all that’s required and in return I learn about life and what it means to be human. There is no other time in a person’s life when the need for true connection is greater. To be invited into someone’s ultimate personal journey is a gift not to be taken lightly. It holds great responsibility for truthfulness and vulnerability with its attending need for confidentiality. Life’s lessons can be transmitted in just a few final months and I’m awed by the opportunity.
Hospice care givers are selfless heroes.
After a certain point a person in hospice care can no longer go and do. All that’s available is to Be. It’s the caregiver who is their loved one’s wheels, hands, utensils, hygienist, eyes, ears and task accomplishers. They become housebound, leaving only when someone’s there to sit vigilance in their stead. Life can exist that way for months, depending on the nature of the illness. And it’s they who experience the deterioration of the person they knew and loved who’s no longer the person they remember. They give selflessly without complaint – the greatest gift of love. They lead invisible lives until theirs can once again resume.
Live life the way you’d like to be remembered.
This lesson can be sobering for someone on a deathbed. One of my patients was postponing her death as long as possible even though its extension caused her suffering to be prolonged. When we learned that she was afraid to die because of her shame about the pain she had caused others in her life, and her subsequent fear of retribution after death, we called in her pastor to pray with her, allowing her to ask for the forgiveness she believed she needed. And that included a necessary plea to her husband. The next day she died. No-one wants to be haunted on their deathbed.
Authentic relationships are the only kind to have.
Once I experienced a true human connection I realized that it’s the only type I want. Life is so short, putting on airs and pretending to be someone you’re not is foolhardy and a waste of precious time. Being invited to peer into someone’s soul can be profound.
It’s gratifying and enriching to be of service.
My time, until now, has been paid for by a number of companies who determined the value I brought to their organizations. Doing what I did had market value and its commensurate performance standards. So most of my waking hours were spent performing to expectations – theirs and mine, tying my definition of value to size of paycheck. Today I know differently and it’s had a profound effect on my life.
Love comes in many flavors…
and romantic love might be the most shallow. Relying on a family member to perform hygiene needs can force the final release of dignity. And yet it’s part of the dying process. Attending to people during their greatest time of need requires true unconditional love.
Shedding a facade makes room for intimate connection.
There are no more airs during the dying process, only naked humanity. When I walk through the doors of a patient’s home I leave my defensive walls behind and open my heart to anything that might transpire for the next few hours. I was privileged to attend to one elderly patient during her active dying phase with her equally elderly husband by her side, over wrought with grief. With fever raging and her husband helplessly watching, I applied cool, damp wash cloths to her head, chest and arms, speaking soothing words as her breathing changed. I witnessed her husband’s tears and last words of love and kiss goodbye – an unparalleled moment of intimacy that I’ll never forget. Even her children didn’t experience this exchange between their parents; by the time they arrived she’d lost consciousness.
Change is the only constant.
Spending time with the dying certainly drives this point home. Photo albums, pictures on the walls, stories from family members – those are the only ties to who this person was – his likes, her dislikes, their careers, their passions. This new person only shares the same name. Most of the time I’ve never met the person they describe. Life represents one changing moment after the next. Might as well embrace it and enjoy it.
Trust defines our human-ness.
When you’re dying all there is is trust. Trust that those who are there will do what’s right and take no advantage. The dying slowly lose all control over their lives, leaving it in the hands of those around them, trusting that their wishes will be honored. It’s heartwarming to watch adult children assume the role of parents and caretakers. And the process reveals the true character of people.
Listening without judgement is vital.
My role as a hospice volunteer is to do whatever the patient needs at the time. Some like to be read to, others enjoy playing games. One patient just wanted to watch old movies. And one gentleman waited until his wife left to break down and grieve that he wouldn’t be around to counsel his grandson into manhood. This man’s son died the year before and now his son’s son wouldn’t have a grandfather. It was more than he could bear and it took all his energy to stand strong in front of his family. Many patients need the ears and hearts of people who come with no family baggage. Holding hands and simply nodding provides comfort.
Friends show their true colors in time of need.
And many walk away, never to be heard from again. It’s easy to be friends when life is humming along; it requires much more mettle when there’s nothing to be gained in return.
Recognizing mortality energizes living.
Working in hospice is not depressing. It’s not morose. It’s not morbid. It ends in sadness but inspires vitality. When we recognize that life will end – for all of us – then we’re compelled by an urgency to appreciate each day and be aware of it. Awareness of the present is a Buddhist tenet and that lesson stands front and center in hospice.
Hospice is a gift.
It offers the dying a chance to end their days in comfort. Without pain. Without tubes attached. Outside the beeping noise of an ICU with its antiseptic smell and sterile walls. And it teaches the greatest lesson to accept that which you can’t control.
Yes, hospice inspires living. May be we all be so inspired.
“Working in hospice is not depressing. It’s not morose. It’s not morbid. It ends in sadness but inspires vitality. When we recognize that life will end – for all of us – then we’re compelled by an urgency to appreciate each day and be aware of it. ” -That is a lesson I continue to learn and you put it very well.
Thank you for the work you do, for recognizing the gifts and for sharing them.
Wishing you the happiest of holidays.
Peace to you and your loved ones.
Thankyou alyssadlv
Joyce,
We (I) have a sense of understanding of the circumstances and sentiments revealed as this is the unfortunate result of many circumstances – if I can assist, please don’t hesitate to contact me.
Your words are an inspiring gift this holiday season. Brings me right back to the true meaning of love/life when I need it most. Thanks Joyce.
That is a beautiful, thoughtful post, Joyce. You are a wise woman!
I appreciate the wonderful work you are doing to make those precious final moments special. I lost my Dear Mother on December 2009. and my beautiful oldest daughter on april 4th 2009 the day after my birthday and the grieving never stops for my daughter was in a ventilator and was not able to communicate with me and my mom passed without being able to say any thing to us. I am hurting so much for i miss them truly. god bless them.
I can only imagine your pain. Best wishes to you.