Grief and Love in Hospice Care
There is no question that in spending time with hospice patients, caregivers experience grief when a patient dies. We grow close to our patients through the sharing of a sacred space of death preparations. We experience grief because we come to love our patients. The grief's intensity depends on the depth of connection with the patient. This is OK. Hospice training materials acknowledge this, and most hospice organizations have bereavement support for the workers, be they paid or volunteer. But training materials also often admonish volunteers not to get "too close" to patients, and, I am sure, the authors of those training binders would shriek at my use of the word "love." These warnings run contrary to my experience. My best work as a hospice volunteer comes when I have a deeper connection with my patients. I find that the closer I get to a patient, the more I can comfort them and support them in their final days. Frankly, I have come to love my patients, and though this might sound strange, the benefits to the patient are well worth any grief I experience after they are gone. I do a few things to mitigate and process the poignant grief I experience after the death of a patient.
My first hospice volunteer coordinator was super welcoming and spoke at length about the joys of spending time with patients. But she was more serious when she told me there was a high likelihood that I would experience grief with the death of a patient. She informed me of the company's support in the form of bereavement counseling, should I need it. This was the first time I thought about the emotional implications of losing a patient.
It was a couple months before I was assigned a patient, Mary, who I came to care for deeply. She was lively and loved to talk about her life and ask questions about mine. We became friends and grew closer with each visit. We discussed life and death. We spoke of pride and regret and leaving something to mark history. With Mary, I was able to achieve presence for the first time. I'll never forget how happy she was to see me when I arrived and the heartfelt gratitude that her family expressed as I left. Unlike most hospice patients, Mary died unexpectedly, without the weeks or days of decline that usually herald the final transition.
“Every time we make the decision to love someone, we open ourselves to great suffering, because those we most love cause us not only great joy but also great pain. The greatest pain comes from leaving…the pain of the leaving can tear us apart. Still, if we want to avoid the suffering of leaving, we will never experience the joy of loving. And love is stronger than fear, life stronger than death, hope stronger than despair. We have to trust that the risk of loving is always worth taking. ”
The loss struck me rather hard. I remember being shocked when I read the email from hospice. My first reaction was to think that there was some error. A call to my volunteer coordinator confirmed the death. A hollow ache formed in my chest, and I realized that I had been thrust into a grieving state. It was not devastating grief, but still, I missed Mary, and over the next couple of days, I tried to process the loss. I tried to understand why I felt so bad about the death of a person I only knew for a couple months, once a week for three hours. Then I got an unexpected phone call from Mary's daughter, Lourdes.
"Michael, I want to invite you to my mom's funeral."
I was surprised and could only manage, "Really?"
"Of course! We want you. And Mom would want you there. She really loved you."
"I loved her too!"
It just came out. And I realized my deeper feelings for Mary. And that did a lot to make my grief understandable. I also learned the reason I was confused as to why I was sad as I was. Somehow, this made it easier to bear and accept.
When I arrived at the church, I sat in the back. But in a few minutes, I saw Lourdes' husband Marcos heading down the aisle toward me.
"Michael, what are you doing here? Come sit with us; you're a member of the family."
I was again pleasantly surprised and buoyed by the appreciation and empathy that Mary’s family showed me.
So, I stood, knelt, sang, prayed, and held hands with Mary's family throughout the service. Participation in the service was incredibly cathartic. I considered it an honor to be included in their family and community celebration of Mary.
The thing is that this is not the only time that this has happened. I have learned from years of doing this that families are extraordinarily grateful for hospice. They are especially appreciative for volunteers who sit with the patient as they grapple with their remaining time.
I can say with absolute confidence that all the families I have gotten to know have supported me by including me in their grieving and remembrance process. It might come in the form of a thank you card with the memorial program in it, a kind text/email of appreciation, or an invitation to a celebration of life. But, there is always some grateful inclusion. That people I just met can wipe their eyes long enough to consider my experience of loss renews my faith in humanity again and again.
Gratitude from families is healing. It is one of the things I find helps me to process my grief. Feeling appreciated is a salve on a broken heart.
I do a few things to help myself process the grief and achieve closure.
I usually try to attend the memorial, and I sometimes will speak at the services if offered. I will write a letter of condolence to the family if I can't do that. I tell them what I love about their loved one and how they touched my heart.
“Only people who are capable of loving strongly can also suffer great sorrow, but this same necessity of loving serves to counteract their grief and heals them.”
I also write stories and essays like this one. Writing down my experiences and learnings helps to internalize my experiences and memories. It helps me to be able to carry that person with me for the rest of my life and feel that I am honoring their memory. The act of writing has always been cathartic for me. I often write first in my journal and later might use that to build a blog post.
The third thing that I do is to let the grief happen. There is no predicting it or managing it. The grief carves a space in my heart to contain the joyful memory and love for each patient. I have come to accept that I will get sad when I lose a patient, and that is a small price to pay to connect deeply with a person who needs comfort and love at the end of their life.
I've said this in previous postings, there are two milestones that we all share that define us as mortal beings. We are born, and we die. There is celebration and love around birth. Love is showered on the parents and the child. Death needs to be more like that, even though it is saddening. The dying person and their family need to be showered with love. Love is the reason for our grief and the salve to our sadness.
“Grief is the price we pay for love”
So, yes, I love my hospice patients. And, yes, I experience grief with every death. And, thanks to Mary and her family, I accept this, as usual, as part of the job. It is the thing that helps me to do the best that I can for my patients. And the pain that I experience is nothing compared to the appreciation I receive and the chance to accompany a person to the threshold.
As an addendum, I want to share one of my favorite poems by Kahlil Gibran. In it, a mystic explains that we must have sorrow to be able to contain happiness. We must accept grief as the price for love. The point of life is not to avoid all pain and discomfort. If we do that, then we cannot experience joy or love. We have to love like there is no such thing as a broken heart. We have to grieve to heal that, eventually, broken heart.
On Joy and Sorrow
Kahlil Gibran
Then a woman said, Speak to us of Joy and Sorrow.
And he answered:
Your joy is your sorrow unmasked.
And the selfsame well from which your laughter rises was oftentimes filled with your tears.
And how else can it be?
The deeper that sorrow carves into your being, the more joy you can contain.
Is not the cup that holds your wine the very cup that was burned in the potter’s oven?
And is not the lute that soothes your spirit, the very wood that was hollowed with knives?
When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy.
When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.
Some of you say, “Joy is greater than sorrow,” and others say, “Nay, sorrow is the greater.”
But I say unto you, they are inseparable.
Together they come, and when one sits alone with you at your board, remember that the other is asleep upon your bed.
Verily you are suspended like scales between your sorrow and your joy.
Only when you are empty are you at standstill and balanced.
When the treasure-keeper lifts you to weigh his gold and his silver, needs must your joy or your sorrow rise or fall.
