By Toni L. Eaton, RN, BSN, MS, President & CEO of Old Colony Hospice & Palliative Care
For some people, visiting a loved one on hospice care can be frightening and complicated. As a society, we struggle with integrating death with life, and many of us become paralyzed when we hear a friend is on hospice care.
You don’t know what to say or do. Everything seems inadequate. You may be dealing with your own grief or complex feelings about death. You’re afraid you’ll make your dying loved one and their caregivers feel even more emotional or uncomfortable during an already difficult time. You feel you might be intruding and are unsure how to act. So, you put it off or avoid a visit altogether.
Caring for those on hospice, we see this all the time. But we also understand that saying goodbye without regrets can be powerful and healing—for the person on hospice and for visitors. So, how can you overcome your emotional reluctance and hesitation for yourself and for your loved ones?
In hospice care, time is precious and fleeting. Understanding that a visit is not just for you but also offers connection and comfort to the patient and their caregivers helps many people get over the difficulty. Spending time together–whether it is a recurring visit or a single visit—communicates, “You are important to me. You are loved. You have a special place in my heart. You will be missed.”
As you try to work through your feelings, we would encourage you to be gentle and honest with yourself. Know you’re not alone in this position. Acknowledging the situation, understanding what is stopping you, and deciding what you would like to do about it are the first steps.
“Not everyone knows how to relate to someone who is terminally ill or facing a serious crisis, “
said Vince C., a chaplain at Old Colony Hospice & Palliative Care. “In that awkwardness, people sometimes pull away inadvertently from relationships that are important to them. They don’t know how to engage. They may have never experienced this before, or it may bring up so many other emotional experiences. It’s a learning curve like anything else in life.”
OCH Spiritual Care Coordinator Maria C. said some people don’t visit because they are concerned about getting in the way or imposing on the patient.
“I think about one patient who had many siblings, and they were not visiting because they were fearful of being a burden and worried that their visits would be too much for the patient. It turned out he was just as worried about them,” Maria said.
These kinds of concerns create obstacles, but conversation and communication can overcome.
“Once they started talking, they were more at peace. The siblings realized they could call ahead and ask, how is it going today? Maybe doing a Facetime would be better that day. The patient understood it was alright to say, ‘Can you come in the afternoon instead of the morning today? I’ve had a difficult night,’ Maria C. said. “Don’t be embarrassed to have a conversation. If you’re leading with love, people are less likely to take offense.”
Others may not visit because they do not know what to expect or what to say once there. They wonder what they can talk about or do when they are there. Try not to overthink your visit and take your cue from the patient. Understand that patients on hospice run the range from those who can entertain their visitors to those who are unresponsive or in a deep resting state.
Just sitting for a few minutes holding someone’s hand can offer comfort to the patient or their caregivers. Sharing a memory of a time spent together can bring great joy. Listening without judgment can be a precious gift.
“Allow the person to guide you,” said Vince C. “Maybe all you do is sit with them. Maybe they need you to listen to them talk about how they’re struggling with the situation or how they’ve come to peace with it. Listen. And understand that listening is just that, hearing what someone is saying without offering your solution to their dilemma.”
Embarrassment can build walls that keep people apart. Some people feel embarrassed that they have not visited, and this makes it more difficult for them to reach out. As more time goes by, the embarrassment and guilt grow.
But Vince C. and Maria C. said that in their experience, most patients and their families understand the awkwardness and would just like to reconnect.
“People worry they won’t know what to say or do,” said Maria. “Just being present for a time is wonderful. It’s just a visit. You can read from the paper, hold a hand, or sit in silence if someone is sleeping. You don’t have to fill every moment.”
If you cannot get there physically, consider reaching out in other ways. Pick up the phone. Write a note. Mail a card. Send flowers. Organize a Zoom. Drop off a meal. Don’t underestimate how much it can mean to reach out.
“The smallest gestures of kindness can have immeasurable effects on those around us,” said Vince C.
Toni L. Eaton, RN, BSN, MS, is the President & CEO of Old Colony Hospice & Palliative Care of West Bridgewater, a dynamic non-profit hospice serving more than 55 communities south of Boston. OCH also runs the Dr. Ruth McLain Hospice Home in Braintree. A native and resident of the South Shore, Toni brings her compassion and experience as a nurse, veteran, and community leader to her insightful columns for South Shore Senior News. She is also the founder of Sunny Paws Dog Rescue. Several groups have honored her leadership, including the South Shore Women’s Business Network. She currently sits on the board of the Hospice & Palliative Care Federation of Massachusetts. For more information, call (781) 341-4145 or visit Old Colony Hospice & Palliative Care at www.oldcolonyhospice.org.