If you’re not someone who worries about death, I envy you. I am a death worrier. Pretty much always, I’ve worried about the end of life—either my own or someone else’s. I’ve had moments (usually in the car with a sad song playing) where I’ve thought so much about the eventual death of a currently living loved one that I’ve cried real tears.
With time, age, and experience working in home care, my fear of dying a sudden, unexpected death is slowly being replaced by the fear I’ll die an extended, drawn-out one. Anyone who has experienced a long death knows what I’m talking about. The hours of sitting vigil, attempting to relieve pain, trying to figure out the best way to provide care, mentally willing them to let go. Long deaths forever change your memories of a person. My Auntie Chee in her last days called out to her mother, a tidbit that both haunts and comforts me—the idea of my sons, at 90 years old, calling out to me in their last hours.
Long deaths are hard on the dying, but they’re equally hard on the living. You worry about practical issues—the cost of care or missed time at work. There’s nothing more guilt-inducing than standing at a loved one’s deathbed and wondering how much longer this will go on because you’ve used your last sick day or you can’t afford their current level of care. Unfortunately, real-life concerns are a real part of dying. You worry about the comfort of your loved one—are you doing enough? Would she want to be medicated? Would she prefer music and open windows or quiet and closed blinds?
Few of us plan for death in the ways that matter most and will bring our loved ones peace. We may set up trusts, write wills, appoint powers of attorney, register as organ donors, and tell our loved ones whether we want life support, but we don’t plan for the process of dying.
How do you want to die? Do you want pain medication even if it makes you unresponsive for most of your last days? What and who do you want to be surrounded by? Do you want quiet music (yes for me) or sports radio (my husband)? Do you want touch—head rubs or light massage—or are you someone who prefers a loved one nearby but not touching you? Do you want a cold cloth on your forehead? Do you want to be bathed every day? Do you want any special poems or prayers read?
These questions may seem trivial or hard to answer. Who knows what we’ll want when we’re dying? Or maybe it feels selfish or demanding to say, “I want head rubs every day.” But knowing the answers will make caring for you easier on your loved ones—who will undoubtedly wonder if they’re taking care of you in the way you would want, and feel guilt for what they think they’re not doing.
If talking about these things with a loved one isn’t possible, there’s an end-of-life planning tool, called Five Wishes, that helps you plan it all out in writing. It’s very simple—you just circle statements you agree with and cross out the ones you don’t—and helps you convey to loved ones your feelings on death and your life—especially if you haven’t had a chance to work through some things before you die. (There’s a section that asks about your desire for loved ones to know you forgive them for past grievances and your desire for fighting family members to find peace with each other.)
As much as I want a good life, I want a good death. Family peace, forgiveness, head rubs, and music. After my kids were born, it was important to me they both hear “Here Comes the Sun” on the car ride home. I wouldn’t mind hearing that same song on my ride “home.” Most of all, I want people to find solace in the knowledge that they are taking care of me in the way I would have wanted because I’ve seen what it’s like for caregivers who don’t have that knowledge.
Molly Rowe owns FirstLight Home Care with her husband, Steve Rowe, and lives in Swampscott with their two sons. FirstLight provides non-medical in-home care to adults in Swampscott, Marblehead, Nahant, Lynn, Salem, Peabody, Danvers, Beverly, and Lynnfield. For more information and help caring for your loved ones in the comfort of their own homes, please visit FirstLight’s website at www.salem.firstlighthomecare.com or contact Molly at 781-691-5755/[email protected]
