When I began volunteer work with Hospice, I did not really know what to expect. I had taken a very comprehensive course on Hospice and what it's all about...it was experience I lacked. What would it be like to sit in silence for two hours with a dying patient? Or what on Earth could I say to people who have only hours to live?
I've made many mistakes. The one mistake I continually make is asking how a patient is feeling. And one day, one of the clients might just say to me...How do you think I'm feeling?
Or, I sometimes even go so far as to say...You look great today!...I want to take that one back as soon as it comes out of my mouth.
But there are times when a client is not conscious. During those visits, I sit and write. Sometimes I write about the client's life; tidbits gleaned from photos and books and belongings all gather together in my writing. Whether or not my writing is correct about all of it makes no difference...I write what I feel during what might be the last time I visit this particular client.
Long term palliative care patients have so many stories to tell! Living with Death as a very close partner cannot be easy; yet each client I have met mostly lives each day to the fullest, with as many jokes to tell as they can remember.
I was discussing marriage with one of them the other day. After looking at photos of the man and his wife in their car on the way to their honeymoon, I asked the man what he liked most about marriage.
Of course, as soon as I said that, I wanted to take the question back. What if they had divorced, what if she had died and the gentleman in question was still sad about it, what if I had opened a can of worms?
And this is what it's like for me. I rarely know the clients well, I rarely know what their hobbies were, what their lives were like, do they like this or that? Do they like to be touched? Do they want to talk, or do they prefer silence? Do they even want me there?
But I know this long term palliative care patient as well as any. He loves to tell stories about his life; yet I rarely heard his wife mentioned in any of them. Which is why I wanted to take the marriage question back as soon as I had said it. Asking it felt a little like skating on very thin ice.
He thought about my question for awhile, looking into the far off distance. I held my breath...what had I begun? And then he nodded, as if the answer had just come to him.
He said...The best thing about marriage to me was that the house was always picked up. Yup...he said...that was the very best thing.
He was very serious when he said this. At first, I thought he was joking, since he loves to use humour. But he wasn't...and somehow I had to answer him without breaking out into a big belly laugh. I had to laugh inside instead, and mumble...Yes, that sounds nice...and leave it there.
I find arguing with a dying person intolerable, and won't do it, although given an answer like this to my question by a well person, I certainly would challenge it. There must be more to a marriage than a clean house! But not for Tom...
I visit a lady who is fully aware, yet due to a stroke she cannot form words. And much of the language she remembers is Native, which is very difficult for me to enunciate. I have a sheet of Native words; we practice them, she and I. She smiles at the way I pronounce them...and yes, I have even heard her laugh. Once.
With this lady, I tell her about my week since I last saw her. I don't ask her any questions, other than whether she requires something to drink. I tell her how I miss the Coast, where my children are, I tell her about my garden and how it is not doing well. I read her stories, many of them posts done by my fellow bloggers. Blog owners of blogs like Enchanted Oak, Studio Lolo, Dragonfly's Poetry and Prolixity, Options for a Better World , Writing Down the Words, All Consuming and others have generously allowed me the use of some of their posts and art work.
With this lady, I will never know if something I've said is hurtful or out of place. When she gets tired of me, her body language tells me it is time to go. It may be after a half hour or five minutes...I no longer worry about whether it's because she's tired or decided she's had enough of my prattle.
But we have a relationship, she and I. With many of the clients, there is no time to form a relationship.
So many clients I have been involved with have died. When I began volunteering with Hospice, I thought I would remember them all. But, unless I look in my book, I cannot.
But when a client dies, I do a small ceremony here for them, by Grandfather Rock. He has absorbed much of my tears and sadness and even happiness, if the dying person was ready for the next journey.
It's the ones who are not ready who I cry over. The ones who have fought the inevitable, who insist and insist and insist it is not happening right until they become unconscious. And when the family is still in denial even at this stage...well, it is sometimes heartrending for me to see young people, especially, in tears at their terrible loss.
It is so much more difficult when death occurs without acceptance.
I will glean more and more experience with volunteering as the days, weeks, months and years go by. I know a volunteer who, by her very presence, can calm a whole room full of relatives of the just deceased. She's volunteered for years...there is not much she hasn't seen or heard.
She's the very epitome of experience and wisdom.
I strive for the same.
In just a few more years...
Work with Hospice is completely confidential. Therefore, patients I mention have been disguised or are a composite of many. Names have been changed.