Grief and Loss for Professional Caregivers: Facing Death and Sorrow as Part of Work

There aren’t many professions where you develop a deep, emotional, and truly personal bond with a client, to the point where they no longer seem like a client, but more like a friend. There are still fewer professions where you develop that bond near the end of your client’s life. This professional-personal connection is part of life for a professional caregiver for older adults. Professional caregivers enter into someone’s life, help them through what could be their worst moments, interact with family members, and possibly spend more time with someone facing their final days than anyone else. And when they die, your job is over, and it is time to move on.

There aren’t many professions where you develop a deep, emotional, and truly personal bond with a client, to the point where they no longer seem like a client, but more like a friend. There are still fewer professions where you develop that bond near the end of your client’s life. This professional-personal connection is part of life for a professional caregiver for older adults. Professional caregivers enter into someone’s life, help them through what could be their worst moments, interact with family members, and possibly spend more time with someone facing their final days than anyone else. And when they die, your job is over, and it is time to move on.
If you are a caregiver, you know how hard that simple phrase—“move on”—can be. You grew very close to the older person, but you are not actually part of the family. The professional boundaries are clear. You may not be needed as the family makes funeral arrangements. You may be invited to the funeral; possibly be invited to speak. Or you may not be invited at all. Often, a family, in their sorrow, may see you as an employee whose services are simply no longer needed.

This can be difficult for you, because you developed a true connection with this older adult in your care. I’ve talked to many professional caregivers who feel conflicted about their feelings and their professional role. As the helping professional, it is important that you recognize your complex feelings. The death of a client is a sad experience. However, the family of the deceased older adult is not the place where you find comfort. The professional caregiver needs to speak to their supervisors, colleagues, friends, and family members about their feelings.
To grieve the loss of a client is important. Professional perfectionism, however, often dictates that “I must not express my sadness because I am a professional.” This self-talk is not helpful. The professional caregiver who works with older, frail, ill, adults needs to recognize that death of clients is part of the experience. If we do not believe that we can express our feelings, we run the risk of experiencing compassion fatigue and burnout. Compassion fatigue, simply put, is the high cost of caring.

Five Ways Professional Caregivers Can Help Themselves, Their Patient, and The Family Say Goodbye

Here’s how to make sure you are taking care of your patients, and yourself.

Assist with End-of-Life Paperwork

As a professional caregiver, you have very few legal rights when it comes to assisting with paperwork (except in exceptional circumstances). No one expects you to complete their living will. What you can do is talk to the family and to your patient to get an understanding of what needs to be done. End-of-life planning is often met with great anxiety. As the professional, you are aware that it is important to be patient with the older client. This person needs to feel comfortable talking about issues about which they have little experience. The client may never have discussed any feelings about the end of life. Listening to the complex feelings of the client can be a very good step towards accomplishing the goal of preparing for end of life.

Help to Make End-Of-Life Wishes Come True

Thanks to Hollywood, we think a “bucket list” has to be full of grand gestures and adventures, like skiing down Mt. Kilimanjaro. It usually isn’t. Most end-of-life wishes are simple, involving reuniting with family or visiting familiar places from the past. A patient I knew just wanted to see his childhood home. People have achievable dreams. What you can do is speak with the older client about her needs. “While you still have energy, what are the things you would like to do that would bring you comfort?” You can ask this question and begin a conversation that might be very helpful and ultimately rewarding.

Work Closely with the Family to Maximize Comfort

We all know that there can be tension between a professional caregiver and the loved ones of your patient. It’s a relationship that is fraught with fear, stress, and guilt. As the professional, you must remember the boundaries. You are not the same as a family member, for whom the dying of a family member may be sad, confusing, and distressing. By working closely with these family members, and being open and honest about what their loved one is going through, you can build trust, and learn to work together to make sure your patient is as comfortable as possible. You can also position yourself as someone the family can turn to when they have questions. This makes everyone’s life easier and more peaceful, both before and after death.

Consult with Peers Who Have Faced the Same Challenges

Being a caregiver is challenging work. Nearly one-third of caregivers report having trouble balancing work and a family life. Because caregivers are dealing with matters of life and death, they face many complex emotions. Creating peer support groups can be a very healthy activity. Talking with people who understand the subtle aspects of working with a client who is near death and their family can be so helpful. It’s important to find peers who understand what you are going through. There are many peer groups online, as well as some that meet in your community. You can call IOA Connect, for example, to inquire about professional caregiver support groups in your area. Communicating with others in a real way can decrease the negative impact of compassion fatigue.

Attend Professional or Group Counseling

Group counseling sessions led by trained experts in grief management can go a step further than peer-to-peer. These can help you understand your sadness, and come to terms with your grief. There is no “getting over it” and certainly no “just accept it as part of your job and stop worrying.” We understand that grief is something that is always a part of you. Working through grief is about understanding your relationship with the person who is dying or has died. There is help available.

Professional caregivers have some of the most important, intimate and undervalued responsibilities. You are helping to ease the anxiety, fear, and hopelessness of someone in their final days, months, or years. Your presence is a great gift to people who are suffering. By practicing self-care, you will be able to share this compassionate gift with many more people over time. You’re important. We want you to take good care of yourself.
At Institute on Aging, we help professional and family caregivers understand their roles and how to fill them best, while also understanding how to handle the stress and sorrow that can come with them. Connect with us today to learn more about our programs.

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Dr. Patrick Arbore

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