BLOG: Advice From End-of-Life Caregivers 


According to the American Psychological Association, 80 percent of Americans die in a hospital or an institutional setting. However, talking about death is hard, even for doctors. People feel as though it brings on awkward, embarrassing, and fearful conversations.

However, not talking about it can increase feelings of isolation, depression, and loneliness. People who are dying themselves, don’t know how to express themselves and therefore it is important that as caregivers, we are able to initiate, react, and respond to conversations surrounding death.

Here is some advice about what caregivers learned from giving end-of-life care.

Palliative Care is Important

Palliative care is specialized medical care for people with serious illnesses such as cancer, congestive heart failure, Alzheimer’s, and other maladies. A palliative care team provides close communication to listen and talk to patients and understand exactly what they want. The team will also work with the patient and their family so that both are communicating and adding an extra layer of support.

However, according to Donna M. Nikitas, a nurse and university professor, family members fear starting up palliative care because they believe it signals the end of life and ultimately a loss of hope. She believes this is completely untrue and that having conversations about palliative care as early as possible can help improve the patient’s daily quality of life and increase clarity about support in an unknown period of time.

Loss is a Learning Experience

Beverly (last name withheld) was caring for her mom who had Alzheimer’s Disease. While caring for her mother, Beverly learned that the loss of her mother internalized every experience as she lived her life. People shouldn’t be afraid to embrace these experiences because it helps you through the present moments. She gained joy from taking care of her elderly mother, instead of sadness. As a result, it allowed the memory of her mother to live on through Beverly’s everyday interactions.

Everything Doesn’t Always Have to Be Okay

You should be able to express how you feel and that includes negative thoughts, fears, and worries. Be honest about death and don’t walk on eggshells. By hiding how you really feel, it will block how your loved one expresses his or her emotions, and ultimately prevent them from fully living their life. Letting your feelings out will also help your loved one know that you understand the situation. He or she will be relieved that they also don’t have to pretend everything is okay.

End of life care is extremely stressful on caregivers simply because you constantly feel as though you have to be absolutely perfect. However, the best way to help your loved one is to just be you. Express your feelings and be honest with your loved one. In return, they will be able to further express themselves and become more comfortable.

Lucy Wyndham, who lives in metro Detroit, has spent more than a decade working her way through the care industry including being a care home manager before taking a step back to raise her family and indulge her love of writing.