Most of us have been through initial grief when someone has died, but bereavement in the following days, weeks and months can also be extremely difficult — especially for caregivers.
“When you look at someone who has been devoting 24/7 care to a loved one throughout a serious illness, then that person dies — now all of a sudden, they’re grieving both the person they loved and the life they lived for the last how many months or years. There could be a real void,” said Allison Stearns, executive director of Hospice Caring, a nonprofit and nonmedical hospice serving residents of Montgomery County, Md.
Michael Smith knows this firsthand. His wife, Bernita, was diagnosed with early onset dementia at 55. For seven years he cared for her, first in their home, then eventually going to her care home to help her and spend time with her daily. She died from Alzheimer’s disease at 62.
“It’s been life-altering, to give up that role of caregiving,” Smith said in an interview with AARP. After his wife’s death, Smith said he came to the realization he’s not alone.
Smith was one of 14 people who recently attended a Hospice Caring retreat, Caring for the Caregiver, for people who had lost someone in the last two years. "It put me in touch with my sense of loss, and sense of hope and opportunity,” he said.
A similar realization came to Vicci Rodgers, who also attended the retreat. She said the retreat forced her to stop and focus on herself after her great-aunt died in July. Rodgers said participants walked away with a key understanding: "a new and brighter perspective of our futures, while still remembering the loved ones we lost and cared for.”
That is one of many lessons organizers hoped participants would better understand. Hospice Caring points out that everyone’s situation is different.
“Certainly, in our society, we think with grief that it should be a quick process, because that’s what society sort of pushes," said Anne Baker, director of adult bereavement services and training at Hospice Caring. "We know there isn’t a time line. There is nothing as far as closure to grief. It’s just, you learn to honor it and how it takes different forms as you move forward."
Mary-Frances O’Connor, an associate professor of psychology at the University of Arizona, said the process of caring for the caregiver is “an underreported issue” and should actually start before a loved one's death. Some studies even suggest the caregiver should be considered an additional patient. “It's becoming more clear that there are both psychological and medical outcomes that differ for former caregivers who are bereaved,” said O’Connor, whose research area is bereavement.
While resources are available, those specialized for caregivers can be hard to find. A report O’Connor is coauthoring references how a drastic increase in the aging population is an indicator that there will be an increase in family caregivers. She stresses the need for more education on the topic.
So what can you do now if you’re a caregiver who has lost a loved one? Hospice Caring officials said you need to slow down and allow yourself time to focus on yourself, while also thinking about the life you lost. You may be able to find support groups or resources near where you live. You can also complete some of the activities conducted at the retreat:
- Find ways to commemorate your loved one.
- Practice journaling.
- Create a vision board.
- Reflect on what life was like before.
“Sometimes people might have put their own personal interests and hobbies on the back burner for a long time, so you'll want to be in a place where you are really thinking about how you want to move forward in the healthiest ways,"Stearns said. "It might be picking up some of those hobbies again. For some people, they might be best by keep really busy, feeling that space and time, because they get lonely with too much idle time. For others, it might be that they need to figure out a way to relax, and take some time to themselves, and learn how to be alone. It’s really getting to know oneself again, where the focus is on oneself, rather than on their caregiving role."