Note from CM: It is good for me to look back on the relationships I have had in my hospice work. I don’t do it enough. Tonight, looking through some old posts, I was reminded of Joe and Marge, whom I knew in 2012. And my heart broke again.
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Marge died today.
A petite, pretty octogenarian, she had been wandering in the world of Alzheimer dementia for many years. I’ve known her for a few of those years, at least I’ve known the lady who rarely sat still, who moved continually from one place to another, looking out the windows, fluffing and straightening the pillows, and then sitting down for a moment, her knees rising and falling as her legs bounced incessantly. Then it was up again, muttering this or that, moving like a tumbleweed blowing across the floor, rarely at rest, moved by some mysterious wind.
“Pleasantly confused” we’d write in our notes, because she’d smile, say a few words that may or may not make sense, give you her hand, and then rise to move about some more.
But today there she lay, still as can be.
Joe, her husband, in the immediate aftermath of her death, seemed a bit lost without her to chase around. His carefully maintained routine had now reached its end.
Joe is also a mover, an actor, a doer. He took care of Marge for a long time. Though he has twenty five years on me I never thought of him as being “old.” He had been an athlete in high school and college, still has most of his hair, and he moves energetically around the house. The military had given him a lot — discipline, plain and direct speech, self-confidence and good habits, a profound sense of duty, and impeccable organization skills. He is a smart man too. Joe had worked for the phone company and he is a master at diagnosing and fixing problems. With all his gifts, he still has an easy, “aw shucks” down-home Hoosier personality. He’s always smiling, quick with a story or a saying, or a “can I get you something?” offer. Then he’s off on the move again, serving his wife by keeping the routine going.
Most of all, he loves Marge.
I don’t mean he is sentimental or romantic. He may be, but I have not seen that side of him. What I have witnessed is the essence of what I take love to be: being with and for another for that person’s benefit.
When Marge came on hospice service, Joe made it clear to everyone that he was her caregiver. We were there to help him, if and when he needed it.
He allowed the nurse to come, of course, to assess Marge and manage her medicines (and he wanted her to have as little of that as possible — only what was necessary). No health aide was needed. He would bathe her and take care of her personal needs. He rarely required social worker visits because he had all the practical matters settled. And in the beginning, he did not want the chaplain. They had their faith and that was enough. Joe believed in routine and didn’t want others coming in and disrupting theirs because he thought it best for Marge.
So, every night they would go to bed past midnight after watching their favorite late night TV show. Marge would sleep soundly until late in the morning. Joe awoke early, did whatever errands he needed to do, and then returned home, read his paper and prepared breakfast for them. He awakened his dear wife, helped her to the bathroom and got her clean and dressed, and then they sat down for breakfast together. While he was finishing up in the kitchen, she would start making her laps around the house, occasionally sitting down to watch a few moments of TV. Joe would spend the day taking care of the household and their affairs while keeping an eye on her and tending to her needs.
On it went throughout each day. Together they played the same sonata over and over again, now moving, now resting, now faster, now slower. On Fridays, he took Marge on a weekly outing to get her hair done. However, for years, they spent the vast majority of their time hidden away, retracing their steps around a closed course. Their world was small, but filled with love. Joe was always with her. Joe was always for her. And she always knew him and responded to him.
After a couple of offers, Joe agreed to let me, the chaplain, come out. I think he wanted to apologize for seeming inhospitable and to let me know that they were people of faith. He just wanted to interrupt Marge’s routine as little as possible.
We had a good visit. I found out they had been hurt and disillusioned by some experiences in church and preferred to keep private about practicing their beliefs. I also found out how funny Joe was and what a good storyteller he could be. He liked me too, and I guess you could say we hit it off. He agreed that I could come out once a month.
He would never have put it this way, but I know these visits were for him, not Marge. He had found someone with whom he could talk and laugh for a little while, and he needed that. I was amazed he felt like he only needed it once a month. We’d talk about his growing-up years and his old neighborhood, sports (always, especially basketball), what he used to do at work, what was happening in his extended family, places he and Marge had traveled, and so on. We had good, friendly conversation while Marge made her rounds or sat in front of the television.
One time he apologized because he thought he might have offended me by saying something negative about church on a previous visit. The way he went about it let me know that he’d been thinking about this for a month and couldn’t wait to unload the burden he’d been carrying. Another time Joe seemed distracted during our usual small talk. After a pause in the conversation, he asked if I officiated funerals. He had been thinking maybe it was time to get that lined up.
Slowly, the routine required more of our team’s participation. The nurse came a little more often. Marge’s medicines needed tweaking to take care of new symptoms. At one point, Joe agreed to having the health aide come, especially to help wash Marge’s hair. It had become too much for her to go out on Fridays. The routine, like a great ship on the ocean, was slowly turning toward home port.
The last time I visited, Marge’s condition had changed noticeably. She was sleeping more and more and moving about less and less. She was far less sure on her feet, and Joe had to guard constantly against falls. To my surprise, he talked about getting a hospital bed and we had a conversation about where he would set it up and how it might help. As usual, he asked every question imaginable and considered every scenario. Joe kept saying, “I’m almost ready to do this.”
If and when it happened this decision would be huge. They had always slept in the same bed, always gone to bed together after watching their late night show. He had always been right next to her if she needed anything in the night. For forever and a day, he had awakened first, got up, and taken care of the morning for them. He had always been with her, by her side, and she with him.
I heard on our team voice mail this morning that Marge fell yesterday. While taking a nap, she had tumbled out of bed. Joe finally agreed they needed the hospital bed. It would come later that day and the nurse would go out to check on them. I decided to call and talk with Joe to see if I could be of any encouragement to him.
Before I had a chance to call, about an hour later, my phone rang. Jack had slept later than usual because he had been awake through the night, worried about Marge. But he knew he had to get up and get their daily routine going. He leaned over, kissed her, then got up and went out to the living room to watch the news. When he came back a few moments later to look in on her, she was gone. Right there in their bed, where she belonged.
He called the nurse and gave her the news.
They wouldn’t need the hospital bed, he told her.