According to the American Psychological Association, 80 percent of Americans die in hospitals or other institutional settings. However, physicians often have a much different view of end-of-life care than family members or the patients themselves.
Doctors don’t always have expertise in emotional support or symptom management. Talking about dying is taboo even for professionals. The conversation changes when loved ones are involved. These caregivers share stories about what they learned from giving end-of-life care.
The Importance Of Palliative Care
Donna M. Nickitas, a nurse and university professor, was comfortable talking about the factors associated with dying and hospice services. However, when it was time to address the situation with Grace, her older sister, who was dying from cancer, Nickitas felt lost.
In New Conversations About End-Of-Life Care, Nickitas explains the difference between providing professional care and supporting a family member in need. What she learned was that physicians tend to do everything in their power to prolong life. Family members fear setting up palliative care because they fear that it will signal a loss of hope.
However, early planning for palliative services can help someone live with a serious illness instead of suffering until the very end. Treatment for medical conditions is important, but so is daily quality of life. Having conversations about palliative care early on can create a smooth transition that isn’t put on the back burner because of heartache and acute emotion. Having clarity about end-of-life care can help caregivers support their family members instead of battling the unknown.
Learning In Loss
When Beverly shared her story about caring for her mother with Alzheimer’s disease on the Alzheimer’s Association website, she stressed that loss can be a learning experience for a caregiver. What Beverly learned from her mother is that the loss of memories does not diminish your value as a person. Instead, you internalize every experience as you live your life.
As you get older, every emotion that you’ve had, every challenge that you’ve overcome and every ounce of grief that you’ve suffered helps you to get through the present moments. Beverly drew from her life experience to find the fleeting instants of joy that came with providing care for her elderly mother.
Everything Doesn’t Have To Be Okay
One story, recounted at CaregiverStress.com, explains how sharing reality with a dying loved one can help everyone feel supported at the end of life. The author resisted being honest about death and walked on eggshells when the subject would come up. However, blocking out what’s really going on can prevent your loved one from expressing his or her emotions.
Instead of hiding your feelings, let them out. You’ll reassure your dying loved one that you understand the situation. You may even help your friend or family member feel relieved that he or she doesn’t have to pretend that everything is ok. Admitting that death is around the corner isn’t a sign that you’ve given up; it’s simply an indication that you understand the situation. You don’t have to sweep what’s happening under the rug. It’s okay to express fear, sadness and uncertainty.
Opening up can help you create meaningful memories at the end of someone’s life. A dying individual may find closure in recalling joyful times. They may feel the need to seek forgiveness and gratitude within themselves. Allow them to express their wishes, and be there for them even if it’s uncomfortable for you.
Rewards Can Come With A Hefty Price
It’s easy to focus on everything that seems to be going wrong when you’re a caregiver. At Reading Eagle, Harry Dietz recounts the privilege of caring for Mary Ellen, his ailing wife, even when things were intensely difficult.
Dietz first sensed that something was different about his wife when he saw her walking stiffly. He thought that she may have suffered a stroke. She was actually in the early stages of Parkinson’s disease. Mary Ellen was also diagnosed with several other serious medical conditions in rapid succession.
Although Dietz was her primary caregiver, he had help and support from family members. However, he was grateful that he could be there for her through this overwhelming time. He kept a journal, in which he shared the thoughts that he couldn’t express to his wife.
He wondered what would happen if he wasn’t around to care for Mary Ellen. He worried that he might only remember the bad memories after she was gone.
However, he received help to take care of her, and he ended up remembering mostly the good times. Dietz is grateful for every conversation that he had with his wife toward the end of her life, no matter how jumbled and confused it may have been. Although the emptiness that he feels now is unfathomable, Dietz says that he learned so much from his wife in her final years.
The main thread in all of these stories is that caring for a dying loved one can be heartbreaking. However, within the despair comes forgiveness, gratitude and unconditional love. Being honest and mindful about those emotions can help everyone get through the torment that comes with end-of-life care.