Helping during hospice: Being present is much more important than being busy

“Food is love,” my partner jokes as she unloads mountains of food from her latest trip to Costco. “I can’t help it! I’m Jewish!” she protests, when I wonder aloud how the two of us will ever manage to consume all that food.

As the lineups at superstores attest, for a great many people being able to prepare and serve meals is a vital way of showing love.

I never expected to encounter this among families caring for someone who is nearing the end of their life. But that is precisely what I see week after week at the residential hospice where I have volunteered for the past 15 years.

When we are caring for someone who is seriously ill or dying, food can be one of the most important sources of comfort for caregiver and patient alike. No longer able to enjoy socializing or dinner at a restaurant, a person with a terminal illness may still enjoy a special meal, treat, or even a dish of ice cream topped with Bailey’s Irish Cream.

At the hospice, family members load the fridge with special items — meat loaf, lasagna, smoked salmon, pickled onions, cream puffs, chocolate chunk ice cream — anything to ensure that their friend or family member feels loved and catered to. This may be especially true if they are no longer able to provide care at home. Losing the caregiver role that has become central to their identity, they can at least still provide sustenance.

When my sister was dying of metastatic melanoma, finding things that she might enjoy became my ongoing challenge. Whether because of the pain medication or the disease itself, Carol felt nauseous nearly every day. This was compounded by the fact that she was lactose intolerant, allergic to many foods, and perpetually constipated (the result of the opioids she was taking.) Not surprisingly, she was reluctant to eat or drink. I scoured specialty grocery stores in vain searching for something besides ginger ale that she could tolerate.

When someone is dying, they will gradually eat and drink less and less until finally, they may be unable to tolerate any food and drink as their organs shut down. This stage can be extremely alarming for family members. A wife who has cooked special meals for her husband in hopes that he would keep up his strength may be devastated when he turns away from her special soup.

“My husband is so stubborn I could kill him,” one woman blurted out in frustration. She would have nothing to do with my explanation that his unwillingness to eat might be the natural outcome of the disease process.

The son or daughter who has been bringing supper to their mother throughout her illness may feel lost without that tangible demonstration of their love. A mother or father, caring for their seriously ill or dying child, may feel as if there is nothing else they can do.

In the final stages of life, food and drink can prove to be fatal. A patient who has difficulty swallowing may aspirate even a tiny piece of the food or liquid, causing pneumonia and death. For patients with a bowel obstruction, any amount of food can cause pain, bloating, and even a perforated bowel.

To prevent such outcomes, it is important for health care providers to explain the dying process to family members and caregivers. Reassure them that refusing food and drink is a natural occurrence at the end of life, not a rejection of their love. They are welcome to offer sips or tastes, but they must never attempt to force their loved one to eat or drink.

As I learned from my caring for my sister, providing food is not the only way to show your love. Your presence — calm, patient, loving — is by far the most important gift you can provide. Watching a movie, reading aloud, playing music or singing — all are ways to ease their journey and demonstrate your love. In the final phase of life, being present is much more important than being busy trying to help.

Katherine Arnup is a hospice volunteer. She is the author of “I don’t have time for this”: A compassionate guide to caring for your parents and yourself. S he blogs at Hospice Volunteering.

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