Just Be | Caring Choices

Most people shy away from being around dying people. That seems to be a normal reaction. But, being around death – experiencing death of loved ones at home – used to be a very natural occurrence in American households.

Before we “medicalized” dying and death, people were cared for at home by family and friends. There was an inherent knowledge about caring for aging, ailing, and/or elderly family members as they reached their final months, days, and hours. More than 80% of Americans say they want to die at home yet fewer than 25% of us actually do that. This disparity is likely because we’re rushed to the hospital by ambulance after panicked 911 calls, or we’re involved in a traumatic accident and traverse the ER-to-ICU pathway, or because palliative and hospice care are discussed/started much too late in a disease’s process.

Caring for a dying loved one at home is challenging and, as I’ve shared in this blog previously, very rewarding. Beyond the demands of providing actual care (bathing, dressing, feeding, toileting, medication management, etc.), there is also the emotional experience of caring for and watching someone you love fade away. It’s this emotional state that I want to address.

I was once witness to a family caregiver’s phone call from a friend. I could see the happy anticipation in her face as the caller expressed desire to come by for a visit. The caregiver’s demeanor and spirit lifted as if a burden was removed from her shoulders knowing that she would have an hour or two with a friend to sit and enjoy a cup of tea and feel not so alone.

As quickly as her smile appeared, though, it faded away as she shared with her friend that her loved one was not responding to conversation anymore. Her joy and soul were crushed, and her heart was broken. It was painfully obvious that her friend decided not to come by … and equally obvious that she felt abandoned.

It’s not always easy to know what to say to our friends who are caring for their dying loved ones. It’s easier (for us) to avoid the situation by offering excuses like “I don’t want to remember her this way” or “I can’t watch him like this.” Family caregivers do not have the luxury of avoidance.

I believe this avoidance is typically caused by fear. Fear of not knowing what to say. Fear in not knowing what to do. Fear in recognizing our own mortality in the face of our friend’s dying loved one. Fear in upsetting our friend with the “wrong” words or by reminiscing occasions spent with their loved one.

We don’t need to know the “right” words. Sometimes we don’t need to say anything at all. It’s so important to just be there for our friends as they provide care for a beloved family member. Sometimes they just need their hand held or a strong, supportive hug. Sometimes they just need our presence to share a cup of tea or a simple meal, or to bring them a bag of groceries, or pick up something at the drug store.

We don’t need to be armed with clever sayings or big gestures. We need to just be able to sit with them, let them share their experiences, and listen. We need to … just be.