I’ve heard it said that in some cases when someone is dying he can exercise some control over the time that the going on ahead occurs; the person might have been waiting for something like a chance to finish something, he may need reassurance that those he is having to leave behind will be ok, or he may be holding on until a certain date passes or until certain people are present.
I think all of these things were true for my dad and that, for as out-of-control as things were during the course of his illness, he was somehow about to commandeer every last bit of strength he had so that, although he couldn't stop what was happening, he could control the timing of things. I think he needed to check some things off his list, not for himself but for us, and I have never admired anyone as much as I do him for the sacrifice, persistence, gallantry, and dedication that it took in order for him to achieve this.
On the first Monday of 2011, the hustle and bustle of my parents’ house had dimmed, with only my parents and Nancy and David there as the sun came up that day. There had been almost constant activity, things to do, and caregiving responsibilities since the second Dad had gotten sick. It still seems odd to me on some level that when his conditioned worsened, when he had gotten to the place that was obviously near the end of that illness, there was actually less for us to do for him. We were still reeling from the shock of the decline, and thus there was a sense of confusion and conflict within all of us. Each of us, whether we were physically in the house with Dad or not, strangely had some leftover energy but were at the same time almost completely drained. Pacing the floor didn’t help, and neither did surfing the Internet for new ideas of things that might help Dad as we had been. Talking didn’t help and really, among each other, it wasn’t even that necessary; without using words, we knew the pain that each of the others of us was feeling. As different as we are in personality and in the exactness of each of our relationships with the man we so loved and so still wanted to save, we felt the same blows, the same sense of aching in our hearts, the same feeling of torment as we were realizing that we could not.
Mom, Nancy, and David had split the night shift with Dad, and after she showered and dressed for the day and came back into the bedroom to sit with Dad, Mom leaned over and kissed him and said, “Happy anniversary! I love you so much!” Dad, who had been lying so still and so quietly in the bed for many hours, opened eyes and looked at her adoringly and then said, “I’ll love you forever.” Tears followed, as they still do for me even now when I picture this scene in my mind; we were so sad and yet so grateful that he had made through to their 43rd anniversary, and we were so touched by Dad’s efforts to convey his final message to Mom.
David and Mom stayed with Dad while Nancy went to work that day. I have no doubt that Nancy was operating on auto-pilot, as was I at my job. It was only due to the shield of the disbelief that any of us were functioning at all at this point, I think.
Dad's case had been primarily assigned to a hospice nurse named Dave, who came to my parents' house mid-morning that day and spent a long time going over the details of Dad’s care with Mom and then gently examining Dad, changing Dad’s clothes and the sheets, all while talking to Dad very compassionately. Dave again emphasized “staying ahead of the pain” with the medication schedule and then said that he would check with Mom again later in the day.
Those of us who were not at the house were anxious and worried; Jennifer and I both spoke briefly to Mom after the visit from hospice that morning, and, although she reassured us that everything was being taken care of there, it was harrowing to feel so out of control and out of the loop. Early in the afternoon, I called Dave from Hospice, who essentially repeated what Mom had told me a little earlier: we were in a holding pattern of sorts. Like the hospice nurse from over the weekend, Dave was making no time predictions, but he did not mince words about Dad’s condition, which, for as hard as it was to hear, I was grateful for the directness of. I told him that I was so worried about the stress of what was going on at my parents’ house, that we were standing by to come back to help and to be with Dad but that, because of the uncertainty of time and what would be needed for Dad on down the road, we just weren’t sure what to do. After we had talked for several more minutes, Dave said that the hospice company could send in LPN’s on 12-hour shifts to stay at my parents’ house around the clock. “We often do that when a family feels they are in crisis,” he said.
I didn’t want to be a family in crisis, but I felt we needed the help or, more specifically, the guidance, the expertise, and the reassurance of someone with knowledge about what to do in a situation like ours. “That would be great,” I told him, and I knew Mom and my siblings would agree. We weren’t usually the type to ask for help, but there was no denying that we were struggling, and, as we had been during the entire course of Dad’s illness, we were willing to do whatever it took to care for Dad. Dave said he would make arrangements for the first shift-nurse to come to the house at 7 p.m. that evening, and I felt a weight being lifted from my shoulders. It wasn’t what we wanted – none of this was – but it was part of our perspective about what needed to be done, part of sticking together as a family, and part of loving and caring for Dad.
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