Last week my grandfather shared with me that Grandma cries every time he takes her to the dining room for meals at her nursing facility. Why does she cry? He thinks she cries because she’s scared that she can’t swallow the food.
Three years ago, Grandma’s stroke left her paralyzed on her entire right side. She never spoke much again, and now she no longer recognizes most of the family. Except for meals and showers, she spends her days in her recliner or in bed. She recently began having trouble swallowing. Grandpa now feeds her pureed foods, but she even finds it difficult to swallow them.
If she cries before meals, why make her eat? I gently suggested to Grandpa that she doesn’t have to eat if it scares her. But after three years, he’s still not ready to let go. His reply was she has to eat to live.
Since I joined our hospice team, I’ve found it fascinating to observe how intricately woven food and families are. In our culture, food is more than just a means of providing sustenance and nutrition. Mealtime is a social time, providing interaction with family and friends. Preparing meals for a family member can be a means of communicating love, compassion, and caring support.
Mothers connect with their newborns by feeding them—holding them close and providing a bottle or breast. As they grow, children find love, comfort, and support in their mother’s chicken soup or homemade cookies. After children leave home, families gather together again around a meal to celebrate holidays, to reunite after periods apart, or to simply spend time together.
At the end of life, we often find that we’ve come full circle. A loved one is again feeding a family member. This may begin as simply a means of providing sustenance, but as the days, weeks, and months progress, it again becomes a means of providing love, comfort, and support.
In my grandfather’s case, feeding has become one of the few ways he can care for my grandmother. He’s dependent on the nursing facility to dress her, style her hair, bathe her, and provide for her medical needs. Over the years, he’s claimed the job of feeding as his way of caring for her. He’s there every day for breakfast and every day for lunch. In fact, the dining room staff now brings a meal for him too. He typically lets one of my uncles handle dinner, but he often checks on her in the evening if my uncle isn’t available to go.
Last week when he told me that Grandma has to eat to live, I knew there was much more to that statement. Not only is it his way of holding on to her, feeding is also the only way he sees that he can care for her. He’s not ready or willing to let that go.
I wish our hospice team was there to help. Our team could have spent the last few months preparing him for this. Our nurse would let him know that her cries and her loss of the ability to swallow are ways her body is telling us that she no longer needs to eat. Our social worker could show him other ways to communicate his care and concern—reading to her, sitting beside her, simply holding her hand. Our chaplain could visit with him about his grief and help him work through the process of letting go.
Unfortunately, my grandparents live outside our service area and don’t have access to quality hospice care. My visits are not often enough to provide the daily support he needs, and my family responds to my educational efforts with their own denial, saying he is just too hard-headed to listen.
My heart breaks to know that this will be how my grandparents spend their final days together. The flirtations of an 80-year-old sweetheart have been replaced with tears over a meal of pureed food. Unfortunately, this is the way too many families spend their final days. With hospice care, families can find another way. Until we reach everyone who needs us, I will continue to do my part with spreading this message—a message of love, comfort, and support.