A Time to Die
When it's time to let go, how do you stop holding on? An account of my conversation and thoughts when my sister-in-law was watching her mother decline. At some point, we have to make the shift from "cheering them on" to "letting them go", but it's never easy. It requires a decision to love the impermanent and, in this case, to let go of the hand you could always hold.
I recently spent 45 minutes talking about death, and hospice, with my husband's sister across the country. Her mother (my mother-in-law)-a delightfully quirky 91-year-old activist who still spends her days faxing her congressmen-just signed on with the local hospice. I'm a hospice nurse, by far the most rewarding work I've done in 35 years in the profession. I'm doing my best to help them navigate these new waters. I understand so well what she's going through-teetering on that invisible line between wanting to cheer someone on to keep trying, and allowing them to decide that it's OK to stop fighting what is inevitable for all of us.
Esther has, by my estimation, months, maybe a year left in her increasingly frail body. Although she's still very sharp, mentally, she forgets things more, has to stop more often to catch her breath, and can't really muster any enthusiasm for exercising with her walker. She spends more time in bed or on the couch, wakes up later, goes to bed earlier. I see the familiar signs of someone looking beyond this mortal coil. Considering the quality of those months is, to my mind, far more important than wringing out more of them by pushing her to eat more and take more walks. There comes a time with an aging parent when you have to stop trying to make things better, and decide to just love them, respect their wishes, and be present. I think that time has come with Esther.
At this stage, it's important to distinguish between what COULD be done and what SHOULD be done. Still, it's hard. Damned hard. As I remember well with my own Dad, it's easy to decide in an abstract way that you don't want to prolong life unnaturally, to trade quality for quantity. Yet, when my rapidly declining father broke his hip, I was heartbroken to hear that he decided not to have surgery (in retrospect, this would have been a miserable experience he might not have survived). I wanted to let him go peacefully, without a lot of high-tech, dehumanizing interventions. I just didn't want to do it YET.
No matter how clear we are, in a theoretical way, about wanting a peaceful, dignified end for our loved ones, we're never ready for this moment to be the last we have with them. That pain is something we sign on for when we let ourselves love someone or something impermanent. Which is, alas, everyone and everything. Loving the impermanent is one of the necessary pains included in this beautiful, untidy package we call life; I've decided to learn to live with it. The alternative, to harden ourselves and not get "too attached" (a concept that has taken much of the heart out of medicine, in my opinion) is not one I care for.
This is what I love most about working for Hospice-we get attached to, and often fall in love with, our patients; it's a given. And although I'm aware of how much we bring to patients and families we care for-comfort, supplies, clarification of what's important, understanding of what they're going through and what's ahead-I always feel I've received more than I give. It's an honor to be with people who are facing their own mortality. Somehow frivolous concerns seem ... frivolous; the specter of death has a way of distilling what's important in life. And being reminded of our universal mortality reminds me not to squander this life I have on resentments, or worries, or acquiring more things. I'm more aware of the beauty, and the fragility, of the world and our relationships.
So, I answered the questions I hear so often. Joining hospice does not generally cause people to give up and die-often the support we give causes them to rally and live longer and more comfortably; sometimes they even "graduate." Pain medicines, used appropriately, do not cause addiction or hasten death, but the need for them often coincides with a decline that has already begun to accelerate; ideally medications relieve pain and air hunger in patients' last months, even sometimes increasing activity. And yes, there are always gray areas: How long is it safe to leave her alone? How much should we push her to eat and exercise? As always, I suggested she answer these questions from her best understanding of, and respect for, Esther's wishes, and by exploring them with the hospice staff.
We'll fly out over winter break; I look forward to spending some bittersweet, heart-full time with my beloved mother-in-law. And, I hope to make sure she's comfortable, and help love her out of this life.
That's the best any of us can do, and what we all hope for in our last days.Last edit by Joe V on Jul 2, '12
RN since the Dawn of Time (35 years, to be precise). Worked in Psych, ER, and now Hospice. Aging, yet perennially immature and inquisitive - pursuing music, gardening, writing a book, saving the world. Stuff like that.
Joined Oct '10; Posts: 25; Likes: 73.3Jul 1, '12 by JustBeachyNurseBeautifully written on an area many of us may not have experienced. Thank you for sharing.
I can say from personal experience, a good hospice nurse does a wonderful service to both the living and the dying.0Jul 1, '12 by xandarosaBeautiful! After I finally get some experience, I thinking of becoming a hospice nurse.1Jul 2, '12 by Debilpn23This was a beautiful article. One of the best I have read on hospice. Someday its my goal to work in hospice1Jul 3, '12 by aging1Thanks, Debilpn. Hope you can get there - it's sweet work.1Jul 7, '12 by coogabooga"the specter of death has a way of distilling whats important in life"
Wow, couldn't of said it any better
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