One of my greatest privileges I’ve experienced in my professional work has been and is to be a witness to another person’s life as they near the end of their physical life. In the past 10 years of working in hospice, I’ve had many memorable patients and moving experiences. Just in the past few weeks, I have had some moments that, as they were occurring, I knew were significant.
A few weeks ago, I stopped by a patient’s home to drop off a copy of her DNR form to her husband. This patient was diagnosed with Alzheimer’s Disease a few years ago and had experienced a steady decline over the past few months leading her to be eligible for hospice. I wasn’t planning to go into the home and visit with the patient and her spouse since I had already made a formal visit the week earlier and I wasn’t aware of any new issues or needs but the husband invited me in and to be polite I accepted the invitation. As soon as the door behind me closed, I heard the all too familiar sound of congested breathing (also known as the “death rattle”). I approached the patient’s bed with her husband at my side and quickly realized a change in her condition was occurring before my eyes. Her husband, loving, devoted and attentive, was confused and curious about her condition but not yet concerned. His day started like all the others and he had been involved in his routine daily activities and even though the noise was new and strange, he hadn’t given much thought as to what it meant.
I gathered some information from him; how long had she been like this, what meds had she been given, when was the last time she ate or drank something, etc. I called the RN to let her know about the change in condition and calmly requested her to visit as soon as possible.
It was only about a 10-15 minute wait before the nurse arrived but death doesn’t work according to our schedule and timing, just like a newborn baby who doesn’t wait for the doctor. I noticed a change in the patient’s breathing pattern. Her husband was in the kitchen preparing a medication. I interrupted his activity and called him over to the bedside. I asked him to hold his wife’s hand and he gave me a confused look. I’ve learned that sometimes you have to say the hard and true words out loud for reality to be made clear and I gently said, “She’s passing away right now. Tell her what you want her to hear.” After a moment of shock, he began to cry. He put his hand on her chest and began talking to her. Even though he was asking her to stay he was simultaneously telling her how much he loved her and how good of a woman she had been. After a few moments, he stopped asking her to stay and just simply rubbed and kissed her forehead and held her hand. His wife exhaled for the last time and then there was stillness.
I watched his face to see how he would respond, I saw sadness and disbelief. I also saw relief and surrender and a form of peace. It was beautiful and awful, tragic and perfect. Because he told me, I know it meant so much to him that I was there and that I showed him the opportunity to love on his wife as her earthly journey came to a close. It meant so much to me as well, that he would invite me in, trust my words and instructions, and allow me to witness probably one of his most vulnerable moments in life.
The word death and the dying experience is commonly spoken of and thought of within a negative context; tragic, painful, loss, miserable, overwhelming, scary. We’ve pathologized dying as if it's a disease to be cured and eradicated, like it's an unwelcomed and unexpected pandemic of sorts. If not for my work in hospice and experiences like the one I’ve just described, I would probably feel the same way. However, I’ve come to respect and appreciate death as something sacred, anticipated, healing and soothing, something that opens doors to deeper intimacy and vulnerability than living can ever provide us.
Caring for another person, especially a person who appears to be nearing the end of their earthly journey, is a challenging task. The work you do as a caregiver is good and important. Take care of yourself so that you can continue to care for the ones you love without losing yourself.
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