I reclaimed my right to cry at a very good time because my husband’s decline was speeding up.
He began to require transfusions on a somewhat regular basis and had a reaction to one of them, a day or so afterwards. Since he’d had transfusions previously with no problem, we did not immediately make the connection. But the rash on his arms, legs, and chest, coupled with welts on his arms, prompted an emergency trip to a doctor.
That summer, our twenty-three years of sleeping in the same bed as a married couple came to an end. Howard had such difficulty sleeping that he would come to bed, only to get up again after a short time. He would make a trip to the bathroom (which was often the reason for his waking), sit at his computer a while, return to bed, get up again, and sometimes repeat that cycle several times during the night.
His desk and computer were in what otherwise served as a guest room and he disliked disturbing my sleep, so rather than return to our bed, he began to just lie down on the guest room bed in the middle of the night when he felt he could sleep a bit more. He eventually spent more of the night on the guest room bed than in our bed. It prompted the rather inelegant comment on my part that if he was going to sleep there, I should at least put sheets on the bed so he could be comfortable.
It did make him more comfortable, and he came to use the guest room as his bedroom. It was logical, practical, and . . . not very satisfactory. Despite the fact that he had come to it himself, he felt a bit as if he’d been banished from our bed. And while I was thankful to have more restful sleep, his absence was a black hole next to me, making me vaguely ill at ease even in my sleep.
But it was inevitable and it made his life easier. He’d begun to shuffle from the guest room to the bathroom and back again, all day, barely lifting his feet at all as he went. When he navigated the four steps from the sleeping level to the living level of the house, he clung to the wall. On the return trip, he clung to the bit of wood that passed for a railing. He had become a frail old man right before my eyes.
Other changes were more humiliating for him. Continence had progressively become more memory than actuality. Its lack thereof put him and the bathroom on the closest of terms. And I couldn’t keep the carpet between the bedroom and bathroom clean because there was a trail of urine being dribbled between the two. When he left the house to go anywhere, his first concern was whether there would be a bathroom nearby. And many times he returned frustrated because he hadn’t made it home in time and had a telltale wet spot on the front of his pants.
No one talks about these things and I’ve no doubt that many people would rather I didn’t speak of them here. But if no one speaks of them, how can we be prepared for them? And how can we know that others have managed through them before us?
One day I approached him as gently and respectfully as I could, telling him that we needed to deal with the issue and he needed to begin wearing something. I had put off the discussion for a very long time because I winced at the very thought of bringing it up. I didn’t want to hurt his feelings. I didn’t want him to feel less a man. And while he talked a good game about being impervious to hurt feelings, he was, in fact, one of the most sensitive people I knew.
He knew what I meant by “wearing something.” No need to explain. He wasn’t angry. He didn’t argue against it. I had, in fact, already bought something called “guards” which were made for men and seemed the least noxious alternative. He took it in with the same equanimity he would have had if I’d told him I had just bought him a new brand of shaving cream. He used them and, I think, was relieved that I’d brought the subject up and had helped him deal with it.
One of his closest friends later commented that a man would almost prefer to die than be reduced to using Depends. I had great empathy for that sentiment and found my heart lurching at the thought of the dignity with which Howard had surrendered to it.
Howard also surrendered to the fact that his own internal power plant was providing too little energy to carry him through much of the day. He wore a path between his computer and the guest room bed, taking naps throughout the day. In part, the lack of energy was due to the fact that he got so little sleep at night. In part, it was related to the ongoing need for transfusions. But it also seemed to be his body’s way of telling him that it was beginning to shut down.
He took a lot of naps, but refused to give much heed to the message about shutting down. His mind was as vital as ever, even if his body wasn’t, and he wasn’t shutting down if he could help it. But that mental vitality—something important to him and one of the things I loved most about him—was not going to last much longer, either.
Neither of us knew it that summer and early fall. Sometimes not knowing is a blessing.
Copyright 2011 by Melanie Mulhall