Monday, September 06, 2010

Experience and Mistakes

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.

24 comments:

  1. I've been hoping you would share some of your experiences with Hospice. I really admire those of you who do this very important work.

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  2. "It is so much more difficult when death occurs without acceptance" is the line of your post that resonates. I lost a family member who had so much to live for but was fated to cope with cancer for years. I knew her inside and out. Yet even I wasn’t sure how to handle the situation at different stages. Mostly I thought that if I accepted she could die of the disease it would hasten her demise and leave her (and all of us who cared) feeling hopeless. Now my regret is that I did not speak enough about death as a possible outcome and how this challenged our ideas about spiritual matters. We were positive thinkers and did not wish to dwell on disappointment. But eventually a seriously sick person has only pain and its management to think about. If lucky, there is also the treasure of a happy moment to share. A stranger to hold a hand and guide the way can be blessing enough and sometimes brings a solace that the people being left behind cannot. The hospice worker is courageous to venture into these territories. The picture a dying person must face is a large one indeed.

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  3. Marion, you're a saint. Thanks for sharing from your experiences.

    My favorite Aunt died at home years ago of lung cancer. She was my mother's last surviving sister and Mama moved in with her to help take care of her, but Hospice also came twice a week. Sadly, it took Aunt Mace over a year to die. She literally rotted away to a skeleton before she finally let go. But two Hospice volunteers came twice a week all that time and brought her fresh flowers, medication and tender loving care. Mama got a break while they were there.

    As long as I live, I'll never forget the pure, unselfish caring hearts of those people. I've often mentioned Hospice to others, too. Thank you for your work. You are an angel in disguise. Love & Blessings!! xo

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  4. This is important work you do Marion. As hard as it can be at times, I know you were called to this. I would want you beside me if I were dying.
    I've been having thoughts of my own mortality more and more lately. That often makes me anxious. But we'll all get there one day, won't we.

    There is magic in your presence and I'm sure all of your patients feel comforted by you.

    xo♥

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  5. Hospice was in my parents' home for the last six week of dad's life. It was one of the most profound experiences. Alas, we waited too long for mom to have the same experience. She died the day we were moving her from supported care to my brother's home for her final days. I have two major regrets in life - that my mother never had a life alarm that would have save her so much fear and suffering the day of her stroke, and that hospice did not happen for her.

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  6. Marion, I would echo what Lo said, if I were dying I would welcome you by my bedside, I imagine that you are doing a wonderful job, even if you have doubts. This is very special work and only special people are called to it.
    Bless you for doing it and for caring.
    xoxo

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  7. thank you for this amazing post. you are a special person, to be doing this work with such sensitivity and caring. YOu know, for my sister in law who died two years ago, to be told she cleaned well would be flattering. She felt it was one of her talents and she cleaned houses for a living for awhile and took much pride in her acumen. I'm not sure why I said that. But there you go, I did.

    Thank you for all you are offering to the world. Be well, suki

    PS a friend of mine, after her mom died, began training to be a sort of mid wife for those who are dying and their families. There is a name for this but I forgot it. It is not through Hospice I dont think.

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  8. Marion - since I have just begun working with Hospice for my MIL, this post is very timely. The Hospice organization is so wonderful and the people who work with them are so talented, kind and compassionate!

    I can tell you that I would never NOT want to hear that I looked great. If I was on death's door it would be nice to think that my hair still looked good for my last few moments - call me vain, but I've been human for too long to let it go entirely.

    I think the guy with the clean house was so honest, I wonder if he was really saying that it was nice to have a house that was also a home where he felt comforted and content. I hope so..

    Lovely post.

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  9. Jan,

    I'd be writing about it all the time, if it wasn't confidential, which I completely understand. By changing names and personalities, I hope to write at least about some of my favourite stories about hospice.

    Aka Penelope,

    Before I joined hospice, I had many people die that were closely connected to me. I didn't know what to say to them, either. Each time, I would search for the right words, yet never finding them. I think it is BECAUSE I don't know the people I sit with, that I am able to talk about death and dying with them. With less emotional attachment maybe.Listening is important, as well,without wanting to jump in and say...That wasn't the way it was!... as a relative might, even at this late stage in the dying process.

    All I know for sure is I want to leave my client more comfortable than when I came in, be it mental or physical.

    Marion,

    Thanks for your story...long term palliative care patients can linger on for a long time, physically wasting away. I wish life was still like this...your mother taking in her sister is very uncommon now. Most of our work takes place in the Seniors Village or the palliative rooms in hospital. And then again, it must have been difficult on families as well, to look after someone so sick, yet I think death was perhaps more acceptable when it happened in home.xoxo

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  10. Studio lolo,

    It must be the age we're at that makes us think of dying. I don't know that I thought of it much when I was young. But time goes by so quickly! Sometimes, my life can feel just like a dream. And I wonder, then, if all those memories really did happen...and I also wonder what I will think of myself, looking back, when I'm 80 or 85.

    Long ago, I made the pledge to live to 104 and still be dancing!

    Annie,

    I'm sorry, too, that you did not have the comfort of Hospice when your mom died. Too many times, it happens just that way...and I have to think it was meant to.

    Annie Coe,

    Thank you for your support, Annie...it means a lot to me. You are one I know I can count on if I should need an ear!

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  11. Your questions are important and you should keep asking them. You may not get the answer you want, but you have possibly opened a door to that person's life which needs to be opened.

    Your dedication is commendable and you must keep trying to meet the challenge.

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  12. Oh, I would love to have you by my side if I were ready to go. Just knowing someone is there would be wonderful I imagine, someone who has freely chosen to do this for another, to be witness, to comfort. This is a hopeful post, and a lovely one with the photographs and the bit about Grandfather Rock.

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  13. You are an angel to these people, simply your presence without needing to speak must be comforting. Some people express themselves by complaining about everything. Even if a person responds negatively to a "how are you?" it is perhaps a welcome question where they can have a sympathetic ear for their woes. It makes them feel good.

    Thanks for all you do and be!

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  14. ah, i have delayed in getting here. i started to leave a comment several days ago and was interrupted. i've come back now and i have the same reaction i had at first reading. we are sisters, marion. the bond i feel with you is indescribable. i am very grateful for that, and humbled by it.

    so when i think of you doing this work, i can almost cry with reverence. i would want you with me too, marion, and heck, who's to say you might hear me across the plains screaming, "MARION! I NEED YOU!"

    hospice helped my Father die and my family cope. from them i first recognized there are Angels among us (i am sure renee was an earthly angel, now a Senior Celestial Angel). the hospice volunteers, aides, nurses, made all the difference for my Father and family. they took care of us at every turn. i stopped being afraid of dyingbecause of them, and my Father, who could have gasped and drowned in his last moments, was lovingly cleaned and held and quietly prayed around. i will never forget it.

    i hope there will be some people you will have more time to know. i imagine your willingness to witness without words is your greatest gift.

    i'm glad we've been blessed with oneanother, my beloved friend. TSUP! always.

    love
    kj

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  15. goatman,

    You're right. Questions are important. One never knows what is bothering another at a time like this...and the right question may just help the person open up. And with experience, I will know just the right questions to use.

    I will keep at it, dear Lyle, I don't give up so easily. It is early days in my volunteer work...there is lots to learn!

    Pauline,

    Hearing is the last sense to go, so even if a person is unconscious, I still talk and pray and hum to them. I'm not so good at humming, but a lullaby or two works. I believe the person, no matter his condition, knows there is someone there who is warm and comforting, lending peace. I'm so happy to be that person, even if my attempts are less than perfect.

    Miruh,

    I know there are people who complain and are generally negative, yet when active dying occurs, it is as if a new personality emerges. Gratefulness suddenly becomes paramount and the formerly negative person suddenly becomes much more malleable.

    But I imagine I will run into one who is negative right to the end, given more experience with patients. And if they need to talk, I'm all ears...no matter what their complaints may be!

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  16. kj,

    "i imagine your willingness to witness without words is your greatest gift." I believe I'll put this on my fridge. "Willingness to witness without words" is a phrase that could have come straight out of the hospice handbook. There's that superb writer coming out of you yet again, kj.

    I'm so glad you had that experience with your Dad. Hospice can make a loss so much easier. Some of the volunteers are amazing...they can zero in on just the right way to handle a family and the dying, all at the same time. I aspire to that, given time.

    I'm glad we have been blessed with one another as well, my dear friend...thank you for your support! xoxo

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  17. One way I often judge a religion or philosophy is whether the person seemed comforted and stengthened by it at the end, or went kicking and screaming.

    I have always been impressed by people who pray Hail Marys or chant mantras on their way out. (George Harrison did!) It seems like they are setting themselves on a wave length, at ONE with the universe that brought them here... almost like: The carnival ride is over now, and the ride is slowing down to a halt. You are readjusting your senses and looking around... Our life is the carnival ride.

    I think that may be what death is, seeing the next/other plane clearly, knowing that now we have to get off of this one. I think death is scary because the next plane is not immediately visible, but calming oneself and praying/chanting seems to bring it into focus. I am just so impressed with people who don't panic, who are well-prepared and calm.

    They seem to know exactly where they are going. :)

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  18. Suki,

    I missed yours and Mim's comment when I replied. I'm so sorry!

    Cleaning well is a great thing, especially if you like it and are good at it. Just not completely sure if it is the best part of a marriage!!

    Here is a link for the doulas or midwives for the dying. http://www.agentleguide.com/

    They do much the same thing as hospice, although they will follow along with the dying person and hold the light. They are also there for the family so they can understand the process.

    Mim,

    I was so surprised when he said this, since he's really such a loving man. Your interpretation sounds warm and caring...much like the man himself. And thank you for saying you would want to know you look well...I would, as well. But some others want the world to see that they are really dying, don't feel well, and want the world to see it.

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  19. Daisy,

    Daisy, dear Daisy...how on earth did you know that George Harrison chanted when he died? I am amazed at your knowledge of the old rockers, but I totally love the fact that you share it all with us!

    I had a wonderful lady who talked about her dying openly and calmly. She refused to eat after awhile, only sipping some tea. She wasn't going to pretend, she said, she was dying, it was time to go. It was especially time to go give God some grief, she told me, she'd given enough here on earth.

    There wasn't any room left in her room when she died...so many people came to be with her as she took her last breath. She made everybody a part of her journey...and nobody refused the invite. Everybody came and felt comforted...just because SHE was so looking forward to what came next!

    that's how I want to be. Thank you for the lovely thoughtful comment, Daisy!!!

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  20. Having been the care giver when Hospice was called in 3 times now, I can only say how blessed these people are to have you as a comforter. And I think I know you well enough to be assured that you are a comforting presence. Yes, time will improve your skills, but the gift has to be there.

    I pray for you today and for those you minister to.

    PS. If you haven't already, you might want to check out Expose Your Blog as a way to increase your readership and find new bloggers to enjoy.

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  21. While getting my 1/2 hour infusion, a girl came in to get her portable drug injection unit. Her whole body seemed to be gray and I managed to catcher her eye for a quick connection. I cannot imagine her living very much longer, but I could be wrong.
    Maybe there is something to be said for palliative care.
    Me . . . just carry me to the mountains and let me go!!

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  22. I came back to read this post again and see what people have said - so interesting and comforting to see everyone's experience. I'm especially interested in the part about praying or chanting while close to death. In the Jewish religion, if you die with a certain prayer on your lips (in your head or heart too I suppose) it's supposed to do extra special things for you. Exactly what I don't know, but I'm hoping I remember to do it or have the time - seems like it would be a comfort.

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  23. DB,

    How nice to see you! I know you have had fairly recent experience with hospice. Thank you for your support. I am impatient, I think, to be as wonderfully sure about myself in a hospice situation as the more experienced hospice workers are. Time will be my ally.

    I have joined Expose Your Blog, but have not had time to peruse the site or use it much as yet. Thank you for thinking of me!

    Goatman,

    I'm glad your eyes met. I think these connections made with others in the same conditions we're in gives an acknowledgement, an understanding of what we're each going through. And when a stranger understands, there is so much comfort received during that moment. I know you did that for the girl that came in for her treatment.

    And I know your family will not want to throw you off a mountain, Lyle, even if it's your greatest desire...you deserve so much more than that!You deserve to be honoured.

    Palliative, in my dictionary, means to alleviate disease without curing. The patient is kept comfortable and pain free during the dying process...and to me that's got to be a really good thing!

    Mim,

    Yes, chanting, humming or singing can be a really important tool, I've discovered. Yesterday, as I sat with a dying woman who was once a singer, I hummed some of the old songs and hymns. Even though she is fairly unresponsive, she responded to the song...I believe I was humming Amazing Grace. Her breathing became more even, quiet. I could feel her listening hard. It showed me that hearing is the last sense to go, without a doubt. And it teaches me to watch what I say in the room where a person lays dying...it is so easy to forget when a relative or nurse appears and we begin to speak. It teaches me to speak quietly,or even outside the room.

    Smells are important, too...I don't know how many people I've sat with who want scented candles, scented flowers or perfume. The smell takes them back to past events and times.

    And Mim, when the times comes, and I hope it's a long ways away, you can write out that prayer and have either hospice or someone else read it to you. Even if you're unconscious,you will hear it, I have absolutely no doubt.

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  24. Just attended services for a lady (89) who was the wife of a fellow I did a lot of repair and construction work for -- deck, wheelchair ramp, etc. I thought about your writings and how they might benefit the pastor or religious rep who has to do the "celebration of life" speech at the funeral services. In this case the lady Methodist pastor did a wonderful job. Although she did not know June well (Methodists seem to rotate their pastors through the churches every couple of years), she collected anecdotes and details of the life of June and Chester very well. Items I will surely remember and items which they had not shared with me previously.

    I donot know how your notes might reach the person who has to do the funeral-recall but I am sure they would appreciate the input.

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