Professional Caregivers develop relationships with their clients and families every day. As we spend more and more time with them the emotional bond often becomes strong as we get to know them and their stories. Joining this life journey near the end of life can intensify a client’s willingness to share even more information. For many caregivers, this is truly a time they cherish--being able to walk this final part of their journey with them. It can also be a very sad time when a client passes or is incapacitated by illness. How does one cope?
Client Loss Due to Death
Understanding grief and how it impacts you is the first step to help cope for most people. Grief is an intense and universal experience for all humans suffering a serious loss. Trying to suppress this emotion can make the process take longer and have other detrimental effects. Grief is not limited to the loss of people, but when it follows the loss of someone special, it may be compounded by feelings of guilt and confusion. We sometimes put pressure on ourselves to “get over it” and feel inadequate because it is taking so long to get back to normal. Recent research has shown that intense grieving lasts from three months to a year and many people continue experiencing profound grief for two years or more. Grieving is a very personal process that can depend on our upbringing, faith, and other personal beliefs. Getting support from family, clergy, friends, and grief groups can help.According to Psychology Today “Because grief obeys its own trajectory, there is no timetable for feelings of pain after loss; nor is it possible to avoid suffering altogether.” They also point out that it is so personalized that the amount of grief has very little to do with getting over it. Some people will grieve very little while others will need to get it out in the open and seek out more opportunities to grieve.
You may have heard of the 5 stages of grief. While many experts say there are more stages they mostly agree that we will visit these stages at some point during the process. The order
and time at each stage depends on the individual.
Shock/denial
- Trouble accepting the fact of death, diagnosis, or a new reality, numbness
Inability to do usual activities
- Anger at yourself, others, professionals (particularly doctors), God, life
Feeling helpless and powerless, abandoned
- Making “deals” with God or friends hoping to change the situation
Thinking about “what could have been” or “should have done differently”
- Feeling overwhelmed with loss and change, sadness, regret, fear, anxiety
lonely, isolated, self-pity, empty, lost
- Adjusting to the new reality, starting to move on Sense of hope, healing, and integration
Client Loss Due to Chronic Illness
Professional Caregivers can also feel a different kind of loss, but just as real, from chronic illness. Illnesses like Alzheimer’s, Parkinson’s, stroke, and others can cause a huge change in the ability to relate the same to the client. Just because you are a professional does not prevent you from feeling a loss from losing meaningful parts of the relationship. Some call this “ambiguous loss” because it lacks the clarity of death. Often people with Alzheimer’s will have moments of lucidity, or people will make progress for a while after a stroke, but ultimately things may not return to normal. These sorts of losses can be very difficult to deal with because we often experience anger, frustration, and disappointment—renewed grief--if for instance, they return to their weakened state. Why can’t they just keep improving, might be the thought. Another state of emotion is Anticipatory grief. This grief starts to manifest itself before the client passes generally knowing it is imminent. Sometimes, when someone has grieved an anticipatory death over a long period, there is less grief when the person dies; sometimes there is more pain when a person dies. It is very dependent on the person.Hospice Support
Hospice organizations have to prepare so many people for grief. Caregivers that choose to do end-of-life care frequently will lose people they care about. This is a high burnout job and often it takes a special calling to perform it over and over. The family, caregiver support team, and their patient all may experience grief while facing death. Although no perfect formula for helping caregivers cope with loss has yet been devised, there exists a framework self-care plan created by Sally Hill Jones, Ph.D., in 2005 designed specifically to address caregiver grief and burnout.Often as caregivers, we put ourselves in the place of the hospice patient with our own biases and feelings. According to Ms. Jones “As Ms. Wilson neared death, my anxiety about her dying without family members grew, despite my not knowing whether this was an issue for her. When the nephew arrived in time to say goodbye and to be with his aunt as she died, I experienced great relief. Upon reflection about the especially strong feelings I had about this client’s death, I became aware of my own fears of dying alone since I have no children. To have this occur on my birthday, a milestone in my own aging, added to the feelings. I did some deep breathing and listened to calming music. I later sat with painful feelings and came to a deeper understanding of my fears, enabling me to distinguish clients’ issues from my own and contributing to more peace about my own death,” Jones explained. Because of this, she advocates for every caregiver to have their own self-care plan. This plan should include strong support from friends, family, and colleagues that may just listen when times are difficult. It also may include professional groups, including support groups from the hospice organization or agency you work with. All of these things can give professional caregivers a place to grieve, and discuss their feelings.
How to Help Yourself with Grieving
According to the Family Caregiver Alliance, taking care of yourself in difficult times is hard. Trusting your own process will help you to do what you need to do in order to best take care of yourself. Acknowledging your feelings—good and bad—will help you to cope better with whatever is happening. Read, journal, get support, spend time at home, or do whatever is nurturing for you.When supporting a griever, experts suggest following that person’s lead and resist judging whether they seem to be insufficiently sad or to be dwelling in grief for too long. Offering practical help and an acknowledgment of a loss are both positive actions. Many mourners want those around them to listen, ask questions, and share memories, thereby confirming the depth and validity of the griever’s feelings and helping them heal.
Acknowledgments
Psychology Today
Family Caregiver Alliance
1-800 Hospice
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