Twice a day, on a normal day, I’m bed bound.
For longer than I care to admit, it’s bedtime when ten o’clock rolls around. I rise early in the morning to write and am not a night owl. Even on New Years, I’m a Californian who’d rather celebrate the next day and year based on my wife’s home state: Wisconsin. Those wonderful Cheeseheads are in Central Time Zone, two hours ahead of Pacific Time!
My pre-dawn rising—usually by 4:00am—prompts a need for a nap. Please, let me grab forty winks for a mid-day siesta. At one church I served, I tucked a folding futon in the office’s corner. Around noon, I’d tell the staff not to disturb me unless there was an emergency. The staff and church members (mostly) understood. Ministers are on-call twenty-four hours a day, schedule meetings in the evening, and Sunday (with all due respect to God’s 6-day creation package) is not a day of rest! The healthy, though odd, habits of a lifetime bind me to bed. (In a pinch, I’ll also claim a floor, futon, sofa or recliner!)
However.
When a hospice nurse announces the once active Ms. or Mr. Smith is bedbound, the others on the hospice team immediately understand she or he is declining.
Can they remain in their own bed? The answer’s often a Yes. But the bed is no longer for temporary rest; it’s a permanent residence. The answer may also be No. And whether crabby or compliant, patients fear abandoning their comfy king-size for a skinny bed with rails. It doesn’t matter if a hospital bed can be lowered and is safer to get on/off the mattress, or that caregivers can more easily respond to the loved one’s needs.
It’s not YOUR bed.
And doesn’t it symbolize giving up and giving in?
Loved ones grieving a death dread the bed. I recall chatting with a widow who shared that she wakes up tired. “How can I get sleep and still be exhausted?” Some who are grieving a death avoid bed because sleep is elusive or the long, dark night spawns unsettling new sounds and old memories. Others head for bed, pull up the blanket and never want to leave.
There are no magic words to transform bedbound into a positive word for the dying or the grieving. In life and near death, we crave being in control rather than anything that binds or restricts us. After death, as grief worries and wearies us, we need rest and yet are restless.
All I can say is what I hope I’ll try to do at those crucial times of life and death and life after death: sleep matters.
For the dying, being bedbound means you’ll need to trust others. The hospice nurse suggesting a hospital bed is safer is telling the truth. Your life—whether counted in days or months—will be better for you and your loved ones if you are in a safe, comfortable place.
For the grieving, you do need rest. Along with trying to eat healthy food and setting aside a bit of the day for exercise, seek sleep. Of course you’ll resist being bedbound! We’re only human. But humans need rest.
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Photo by Jp Valery on Unsplash
My book, A Companion for the Hospice Journey is available at Amazon.
Thanks, Larry. So true. An ethnographic study of what happens around a bed in caregiving could be enlightening! Where it's first ensconced in a home and then where a space is made to fit the bed.. a palliative/end-of-life 'area'.
I made 'lasagna beds' almost daily in the dark times—'incontinence bed pads-fitted sheet' x3 or 4 so that I could easily strip them with minimal disturbance to Dad. I was going to say'for overnight', but as you've noted, day and night are indistinguishable in palliative / end-of-life care, only defined by which set of medics we'd call.
We tried to sustain some sort of routine, usually marked by types of meals to make the most of daytime.., but in the end, for us caregivers, a week, a month, a year can be one long day with periods snatched for 'enough' recharge sleep.