Hospice Guilt: When you can’t do more. Then what?

June 25, 2016

by Jeanne Denney

Last week I stopped by to see a patient I have incredible guilt about.  In my arms were a stack of clothes I had hurriedly gathered from racks of a church thrift shop and laundered in time stolen from my work.  I hoped that they would fit.   I was responding to a call from the volunteer coordinator that Jenny needed summer clothes, could I get them?  Yes, I said.  I should feel good about myself, right?  But as I drop them off, I don’t.  Jenny is a patient that I have been seeing on and off for about 6 months that were chaotically busy for me.   I have hardly seen her, or not nearly enough. I forget about her regularly.

Jenny is a slight and feisty woman of Italian ancestry around 90 years old.   I don’t know much else about her.  I know that she never married and doesn’t have children.  She has a niece somewhere that comes to see her occasionally, but not often.  I know about the cracked picture of her mother holding a dog.   I fished it from her bedside drawer.  I know that her dentures and glasses are lost, and that there is a small hot pink handbag in her drawer.  This is about all six months has taught me.   Jenny is also hard to understand.  She mumbles incoherently and repetitively, but she is occasionally clear.  Like one day she told me that she grew up in Brooklyn, and had 4 older brothers.   Another that she wishes she could have pizza.   I know that she enjoys her meals,  feeds herself decently well, gets angry with people who mess with her, and has no problem kicking you out of her room (such as the first night I visited her) “Get out of here!  Leave me alone!! I don’t like you!!” She is tough.  But in six months of me sticking my head into her room for short visits,  playing her music while she settles for sleep, or sitting with her during dinner she has come to recognize and tolerate me.  “Oh yea, I remember you Gabolla.”  She calls me and almost everyone “Gabolla”.  Not a clue what that means.

The truth is, I haven’t been anyone’s idea of a “good volunteer” with Jenny.   Good volunteers schedule regular visits, get to know their patient’s lives and longings, think about how to delight them, connect with them in all kinds of deep and meaningful ways.   Right?  Well, that is what I did in many good years.  Now years later, I am mainly teaching and writing instead of doing.  No longer a consistent volunteer,  I am a team extra. Is it time to stop volunteering?   I don’t want to quit, but is this fair?  Should I just hang it up?On this evening I had those questions.  I had not visited for over a month.  I had little time, just enough to bring the clothes.  I was weirdly embarrassed.  If I wasn’t going to be a devoted person in her life, what right did I have to pop into her room like a do-gooder as if expecting praise?

When I arrived Jenny had just been put to bed after a long day in her wheel chair.  Cartoons were on in a dark room.  “Hi Jenny”  “Oh it’s you Gabolla.”  Her face lit up.   “Yea, I remember you.”   I took her hand, almost wishing she hadn’t remembered.  “Yea, it has been a long time since I have been by Jenny.  I am sorry.  I have been gone.”, I say (true enough).   “You are working Gabolla.   Thank you for coming.  You are a good person.   You are a good person…” she said over and over.  Though I am certainly not feeling this, I wonder how she knew to say it.  I stroked her hair.   “I need to do your nails.  Next time I will bring nail polish.   What color do you like?”  Small talk.   “I brought you some clothes Jenny.  They said you needed them.”  “I don’t need no clothes.”  “Well I brought them anyway.  Want to see if you like them?”  One by one I held up tops, pants and a nightgown.  Too big. I don’t like that one.   “Oh, I like that one”… a knit top with bright pink flowers on it.  I liked it too.  “You are a good person”, she mumbled….”You’re like a daughter.”

Like a daughter?!  Guilt doubles.   I remember that Jenny never had a daughter.  What kind of daughter would be so remiss?  Me, the hospice slacker, a daughter?   But the guilt did have a very familial feeling, one I know hospice families live with constantly, especially when there are young children, work demands, family crisis, illness or when family lives at a distance.   The truth was, Jenny didn’t expect much from me.   She had been here for years. She did not know I was a hospice volunteer or hold grand ideas about what I should do for her.  She just knows that now and then, out of the blue,  I show up to hold her hand, bring her garden flowers in a glass jar, ask her questions, play her music, bring a new top she liked or a gift.  Like a daughter.

When working in a low-budget corporate nursing home, short of moving in or taking them home, how can we not feel guilt on these visits?   The environment and its workers are depleted, the situation usually shocking.    The resistance we may feel just getting out of the car to walk to those doors can be large.   It sits in our conscience like lead.   We can’t fix what we see in just a short visit.   Does it matter?  In short…Yes.  Because most often just what we are able to do, in human limitation and ineptitude really does help.

“Thanks for knowing I am here...”

Years ago an familyless patient in a run down nursing home said something to me I haven’t forgotten. “You don’t know what it means to me that you know I’m here.”   Those words have been my guide post in guilt.   She didn’t say “what it means to me that you come..”, but that I just know.   Awareness itself seems to matter: carrying patients in our thoughts, praying for them,  thinking about their needs, even when we can’t get there, even struggling with  our aversions to going.  Could this daily, unseen inner “work” also be service?  

I am not suggesting that volunteers neglect patients, only that we might drop idealisations that abound in hospice work:   the inevitable feelings of “if only I had done/given/stopped by/said…” (to have made it more perfect), or the moments of death that go unaccompanied.    We are human.  Just like families.  A little can be a lot.    Sometimes our patients know more about what is enough than we do.  Hey, maybe guilt itself does some of the work of care.  But always,  present or not,  if we show up for the lessons, they will be given.

A silent thanks Jenny for this one.


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8 Responses to “Hospice Guilt: When you can’t do more. Then what?”

  1. Katherine said

    Thanks to you and Jenny for this wonderful reminder. There are so many lessons we learn from the people we meet in hospice. I volunteer in a residential hospice so I am always dealing with up to 9 patients in a shift. And sometimes I am just “too busy” (making lunches, cleaning the kitchen, making beds) to simply be with someone in need. At times, when I am sitting with someone, a staff member will look at me as if I’m doing “nothing” (this doesn’t happen a lot but it does… and then I feel guilty!) when I know that being with someone, especially if they are dying, is the best thing I can be doing, the “right” thing…. But sometimes too I get caught up in doing, and forget about being, myself..
    Thank you for the work that you do…

  2. Thanks Katherine! Nice to hear from you. And thanks for the work you do too, and for the consciousness you hold. If you read other posts you will know that I have high regard for doing nothing at bedsides. I hope you can do more of it without guilt. Or with guilt. As the case may be. If you would like to share some of your own stories and experiences here, I would most likely be happy to have them.

  3. Carol Galione said

    Jeanne. You echo my feelings perfectly. As Volunteer Coordinator for a Hospice agency; each day I scramble to match patients with volunteers,with the high hopes that they take on one or more of them. Some days I feel as if I’m drowning in patients needing care and attention. Some days I feel my work is very deliberate and other days haphazard; BUT as long as I’m here I will continue to do what I can because deep in my heart, I know what you know…IT MATTERS! Any little bit you can give matters immensely during this transitioning state in our patients life. It’s magical I think- a rare opportunity to instantly increase the value of time…and although we are aware of the time we are or are not there- I think that Jenny is more apt to live in the moments you are there…With gratitude
    Carol Galione
    Volunteer Coordinator
    United Hospice of Rockland, Inc.

  4. Charlie Izzo said

    We Show Up………Blessings Come…….No Expectations…..Great To See My Reflection in You……

    And Jenny… Thank You….

  5. Jody Atkinson said

    Jeanne, you are doing angel work. Thank you for this post. I am so grateful to have you in my life.

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