3 Ways to Nourish and Care for a Terminally Ill Loved One
Last year I experienced one of the great, unexpected joys of grand-motherhood. One lunchtime I introduced my then 18-month old grandson to my meatballs.
He took a taste and seemed to consider it for a moment. Then his face lit up and he opened his mouth wide for more. Some months later, I introduced him to my pot roast. Again, a taste, a happy face and a plea for “Meat! Meat! Meat!”
People in the diet industry advise us that food isn’t love and that we shouldn’t confuse the two. But they’re wrong, of course.
Food is one of our basic expressions of love. It’s one way we nurture each other and connect with one other. It’s how we celebrate events major and minor, from weddings to Super Bowl and July Fourth parties to casual picnics in the park. It will certainly be an important part of our upcoming gatherings for Passover and Easter.
A chef I met recently summed it up so clearly. “All I ever wanted to do,” he said, “was to feed people and make them happy.”
The Misconception About Food and Drink at the End of Life
So perhaps it shouldn’t come as a surprise to realize that there is a giant misconception about food for people who are very close to the the ends of their lives. That misconception is that the dying suffer terribly if they don’t eat or drink anything; that they will die of starvation or dehydration. Further, that anyone charged with their care is cruel and inhumane if they do not feed the ill, or at least give them fluids.
A person’s lack of appetite is a powerful and unwelcome symbol of decline, and a harbinger of the loss we will soon experience. If we’re caring for someone who is so ill, we somehow still want to continue to nourish them, to keep them with us, to feel we are helping them, to show them how much we love them. If only Mom or Dad would eat, people think, they could get some strength back, feel better and slow the progression of illness.
Maybe you’ve been there. I certainly have. At the end of my mother’s life, you could have measured her nourishment in spoonfuls: a little apple sauce, a little ice cream, maybe a little jarred baby food.
She drank a few gulps of water, or juice. But thankfully we had a hospice nurse who taught us that my mother ultimately would have no need to eat or drink; that it was part of the body’s way of shutting down. And that this caused no suffering or pain. The cause of her death would not be starvation or dehydration; it would be the brain cancer.
The Drive to Keep Nourishing Our Loved Ones
I’ve seen the sorrow and anguish I’d felt mirrored in the faces of family members I’ve visited over the years as a hospice volunteer. One woman in particular stands out. She was about my age, and her mom was in her late nineties, confined to bed and sleeping most of the time. Every 10 minutes or so, the daughter would leap out of her chair and hover at her mother’s bedside.
“Do you want anything, Mom? A little juice? A little Jell-O?” And she’d try to get her Mom to eat or drink something. But of course her mom wasn’t interested.
Here’s why: The American Hospice Foundation notes that “When a person with advanced disease or a terminal illness stops eating, usually it is because his/her disease has progressed to the point where the person is no longer able to process food and fluids as does a healthy person. Forcing this person to eat, or starting artificial nutrition and hydration, does not help the person to live longer, feel better, feel stronger, or be able to do more.”
The Case Against Artificial Nutrition and Hydration
But what about artificial nutrition and/or hydration? Here’s what the American Academy of Hospice and Palliative Medicine has to say: “For patients near the end of life, artificial nutrition and hydration is unlikely to prolong life and can potentially lead to medical complications and increase suffering.”
It’s better, the experts say, to offer a little food or something to drink, and if your loved one wants it, even a minimal amount, fine. If not, don’t force it.
That begs another question: How can you continue to nourish your loved one, if food and fluids are no longer an option? You can give ice chips by mouth to keep lips and mouth moist. For my mother, hospice gave us a supply of what looked like sponge lollipops; run one under the cold water and a person can suck on it for hydration.
You can talk calmly with your loved one, even if he or she isn’t responding to you. Recite poetry, or prayer, if that has been important in his or her life. Or play his or her favorite music. Or use a little lotion and gently massage hands, legs and feet. Or sit quietly holding his or her hand as you experience this most sacred time together.
What advice would you give to a friend who is caring for a terminally ill loved one? Have you had to deal with something similar? If so, have you found simply holding hands, playing music or reading to a loved one is the best thing to do? Please share your thoughts and experiences in the comments below.
A journalist for more than 40 years, Ellen Rand is a hospice volunteer and author of Last Comforts: Notes from the Forefront of Late Life Care. Inveterate optimist, aging baby boomer and besotted grandmother, she is passionate about sharing news and guidance about finding excellent care for ourselves and our loved ones. You can visit her blog here and follow Ellen on Twitter.