No Visitors Please
End-of-Life is Exhausting.
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My mom went on hospice about two months before I went to Florida for a winter vacation with my husband and kids. And then she got Covid. She wasn’t getting better, but she wasn’t getting worse either. The hospice nurse, rightfully so, remained committed to not guessing on timing.
“She could die tomorrow or she could die in two months.”
I decided to have a discussion with the hospice chaplain. I told him that I didn’t know what to do. Should I go on this trip with my family or stay home and wait for the call that my mom was actively dying (the last few days before death)? And then he said to me one of the most poignant things that has impacted my life and my work as an end-of-life doula.
“Dying is an inward process.”
“Your mom doesn’t need you. She’s using all her energy to transition. Stay if YOU need to see her. Otherwise, go enjoy your family.”, he said confidently.
And so I did. I was in the middle of a children’s space-themed playground at the Kennedy Space Center in Cape Canaveral, Florida when I had received the call that she had died. I’ll admit that I questioned what the chaplain had said and my own decision for a while. But as I gained more experience in my work and witnessed more people in their final days, I appreciated his wisdom.
End-of-life may not only be an inward experience from a spiritual perspective, but it is also exhausting – both to the dying person and their loved ones. A lot is happening to the body as it nears death. Metabolism slows dramatically and energy reserves drop. Organs begin failing, causing chemical imbalances and making most bodily functions laborious. Oxygen levels drop making breathing and even simple tasks like speaking, difficult. And although loved ones and caregivers are obviously not going through this same physical process, they have likely been missing out on sleep, not eating properly and generally not taking great care of themselves. And all involved are grieving.
And then someone who hasn’t been part of your lives in the last several years knocks on the front door with a casserole and a desire to say their goodbyes.
People come out of the woodwork during the 11th hour - friends who haven’t been around for years, estranged family members, those who may have been in the “acquaintance” category.
I give my clients this simple piece of advice: It is okay to say “thank you for the casserole, and we are not having visitors right now.”. The best scenario is to be able to discuss those boundaries in advance, including some education (see above) about why end-of-life is exhausting. But if even that opportunity doesn’t happen…
It is always ok and the right decision to take care of yourself.
And if you are on the other side? The one wanting to visit in these final days to say your goodbyes, and are confronted with “No visitors please.”? Respect their decision and understand that your desire to say goodbye during this time is more for you and less for them.
Light a candle for them. Journal about good times. Look at pictures. And choose to connect more with the living, long before the inward, exhausting end-of-life transition begins. That’s when they need you.