My thoughts today are not only for patients and their caregivers, but also (at least a little) for those who aren’t “hospice appropriate.”
But first, I’ll focus on the dying. Several months ago one of our physicians at a hospice team meeting warned about . . . overstimulating patients.
Sometimes a patient seems oddly agitated and unsettled. Maybe their usual calm demeanor has been replaced by caustic comments or awkward silences. If they usually spend much of their time resting, why are they so wide-awake? Or have other unsettling actions or attitudes been observed?
Is a particular medicine the problem?
Has the dying process accelerated?
Has the pain from their terminal illness abruptly increased?
Those questions (and more) are possible and should be evaluated.
But it could be overstimulation.
The patient may literally have too many visitors. Or the handful of visitors—beloved members of the family or dearest friends—are so grateful to see the patient that they talk . . . and talk and talk. The patient doesn’t have a chance to rest. There is simply too much activity and the presence of the wonderful people and/or the joyous sharing of memories physically and emotionally overloads the patient.
When hearing the hospice doctor mention this, it contradicted what I’ve been told, and certainly some of what I’ve conveyed about the needs of the dying!
Often people are “afraid” to visit the dying. The dying person may rightly feel lonely, neglected, and isolated. How can there ever be a concern about too many visitors?
With the finality of death looming, it’s important to have time to express the deepest feelings with those you love. Maybe, finally, there can be reconciliation between an estranged child and stoic parent. Maybe, finally, siblings set aside differences and promise their dying parent that they will find better ways to communicate. Maybe, finally, the dying grandfather speaks openly about his wartime experiences, and the lifetime burden of having so many young friends die is lightened as he tells stories to his family.
The time taken with the dying, the sentiments exchanged, the risks of openly forgiving or being forgiven, can all become healing moments for patient and visitor.
But there is a flip side.
The dying also need rest.
Too many visits in too short a time can be costly on a fragile body.
Earlier this year, my wife and I brought a puppy home. When we picked up our ten-pound bundle of energy from the breeder, she “lectured” about food, crate training (we failed that, by the way), the ever popular peeing and pooping admonitions, and much more. One thing she emphasized was maintaining a calm environment in the initial days. The puppy will be in a new environment, away from its mother and litter for the first time. She shared horror stories of puppies rushed to the vet’s office within days of their arrival. The puppy wasn’t eating or had been strangely lethargic. Why?
The proud owners invited “everyone” to meet the furry and funny fluff ball. Everybody touched it, played with it, and spoke its new name. The puppy was overloaded with attention.
Let the puppy rest. Let the puppy have some time by itself. Let the puppy and the new owners have essential bonding time.
The dying may need that too. I understand, for the best and worst reasons, why people want to come and visit. And it’s awful when someone is dying and no one visits.
But saying “no” and getting rest should not be ignored.
If you hope to see your good friend before he or she dies, ask when it’s a good time to visit. Honor their needs and not your schedule.
Some families, and some cultures, expect “everyone” to gather as death nears. I understand. But there have been situations—and hospice colleagues have shared similar tales—when I’ve had to literally wade through a crowd that felt more like New York’s Times Square. People were milling around on the driveway, the front yard, and in the house. Doors opened and closed. Voices muttered and shouted. Children cried. Dogs barked. Some had to have “one last word” with their friend. Some would never enter the dying person’s room, but that didn’t prevent them from drinking another beer and swapping another story with others in the kitchen.
I encourage someone to be the designated time cop, to gently (or not so gently) ask visitors to leave. Which is hard . . . very, very hard. But your dying beloved likely can’t or won’t do it.
But my concerns aren’t only about the dying.
We live in an overstimulating world. Emails, texts, streaming video, face time, and more. Home is as hectic as work. The kids need to be chauffeured hither and yon. The church-mosque-synagogue-temple wants us at that committee meeting. The obligatory gatherings during the holidays crush calendars. While grabbing a few fitful hours of sleep, the to-do list grows like a patch of zucchini.
Those who are dying need rest. I wish every hospice patient had a compassionate “time cop,” helping to balance saying yes and no to visits.
Maybe I’m being foolish, but I also hope those who are healthy, those with the relentless to-do lists, also remember to sometimes say, “No.” We are all at risk for overstimulation.
Whether you are a hospice patient or simply losing patience, when do you take meaningful time . . . for you, for your loved one, for the health of your body and spirit?
(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)by