I see this, and I feel conflicted because so much of my life revolves around death. Well maybe it doesn't revolve around death, but death certainly plays a prominent role and is on my thoughts quite a lot. As an activity coordinator for residents who have Alzheimer's and other dementias, my job is to bring joy, stimulation and engagement to people at the end of their lives. While it's a pleasure and an honor to be with them, seeing them decline and eventually pass away is by far the hardest part. Witnessing my own father's decline over the past eight years, and specifically the 28 months he's been on Hospice, has been both enlightening and heartbreaking.
I only had a short time to visit Henry this afternoon. I had intended on getting out to Maryhaven in the late morning but had been running late all day and didn't get there until 12:45p. I had to be back in Evanston by 1:30p to help set-up my co-worker's baby shower, which meant I had to leave Glenview by 1:10p. I ran in quickly, signed in how I always do ("Carrie" visiting "Henry") and dropped off some yogurt for him in the main fridge. After a quick scan of the living room, I realized that he was still in his room and headed that way. From down the hall I could hear his screams, and by the time I got to his room I saw that Rachel, his wonderful Hospice CNA, was getting him dressed. I poked my head in and his eyes met mine and he stopped yelling. He was lying flat in bed, wearing a diaper and undershirt with his sweat pants halfway up. Julie, his Hospice nurse had said he had been losing weight but I was still shocked to see how frail and emaciated 140lbs looked on my once robust father and I caught my breath. I walked in, gave Rachel a hug and gave Dad a kiss. I turned on the CD player and started singing along with Billie Holiday, in an attempt to distract him from the pain and terrors, real and perceived, of arduously being dressed by someone else. I reached for his hand while Rachel turned him to the side in order to get one sleeve of his sweatshirt on his arm, and tried to quiet his yells of protest. He squeezed my hand and stared at me. For the next 15 minutes we continued on this way, Rachel turning him this way and that and angling his head into his shirt and wrapping his legs in the protective socks and Henry looking into my eyes and squeezing my hand and wondering...I don't know what. Begging me. Asking me. Questioning me. And I couldn't help him. And then I had to go, promising that I would be back on Thursday and would be able to visit longer. And I left. And I felt terrible.
I can't think of anything worse that watching a loved one suffer and not being able to help. I want my friends' children to come in to this world happy and loved. I want to protect them from pain forever. And I know that's not possible. And I hurt inside.
