Caregiver grief is a complicated process that starts long before a loved one dies. It is called Preparatory Grief, and it’s what we experience as we have to adapt and adjust to the ongoing losses and changes that occur as a result of a progressive and degenerative disease. It’s a different process from the grief process we go through after a loved one dies.
There’s no scale to measure which type of grief is more difficult because whether you are grieving the gradual and continual losses that occur over an extended period of time, or you’re grieving a loved one’s actual death, you will hurt as much as it is humanly possible to hurt.
In the video about Preparatory Grief, Caregiver Speaker, Elaine K Sanchez, co-founder of the CaregiverHelp Support Group Program shares a story from her book, “Letters from Madelyn, Chronicles of a Caregiver.” In one letter Madelyn wrote, “My husband died on October 30, 1993. We just haven’t gotten around to burying him yet.”
Madelyn believed that when a person was caring for a sick husband or wife, it could feel as if you’d been alone for the same number of years that person was sick. She went on to say that often when she looked at her husband, what she saw was not him. Rather, she saw a repulsive old man, which made her realize she needed to remember who he was before the stroke and prostate cancer.
Signs of Preparatory Grief can experience ailments such as:
- Difficulty sleeping, lack of energy, irritability
- Change in appetite: weight gain or loss
- Headaches, stomachaches, intestinal problems, back and shoulder pain
The Grief module in the CaregiverHelp Support Group Program developed by Caregiver Speaker Elaine K Sanchez, and her husband, Dr. Alex Sanchez, helps caregivers understand that they may also experience:
There are no shortcuts through Preparatory Grief, but the process might be a little less stressful if you can cut yourself some slack and make self-care a priority.
If you can accept that self-care is not selfish, and if you will take care of your body and pay attention to your mental, emotional and spiritual needs, you will be in a better position to help your loved one now.
It is also important to have honest conversations about what matters most to your care receiver at the end of their life. Getting information so you can make informed decisions about palliative care, and hospice care can help you and your care receiver make choices that will help reduce their suffering and help them maintain their dignity at the end of life.
After a loved one dies and your role as a caregiver comes to an end, you will go through a different type of grief. It’s never easy, but with support, it will be possible to come to a place of acceptance and peace. At that point, you will be in a position to create a well-deserved new life for yourself beyond caregiving.