A major side trip

I went to visit Robert yesterday. I went with his friend Jim. We took the train from Penn Station to Providence. Neither of us felt up to driving but in the end, Jim kept saying he wished he had rented a car, then we could have stayed longer, wouldn’t have been dependent on Cynthia to drive us around, could have done more to help Bob clean up his belongings.

Cynthia met us at the train station, shuttled us from there to the nursing home, to a restaurant for lunch, to Bob’s apartment, back to the nursing home, back to the train station. She is a tireless, generous, insightful, compassionate person and I (as well as Jim and Bob) am so grateful to her and her agency, Access. She said that Bob has talked about me often during the five years he has been in her care. I’ve been very much a part of his daily life. This helped to hear.

She asked us both if we were shocked by seeing him as he is now—pale, immobile, a white beard (no one had shaved him for a few days, maybe because they knew he might yell at them if they didn’t do a good job), and slightly groggy from the pain medications. Both of us had expected worse. He was still Bob. Still fretting over details of his care, his belongings, not wanting to be a burden, but not being able to do anything for himself. Not able to feed himself, take a sip of water by himself, not even able to ring for a nurse himself, hold a phone, change the TV channel, comb his hair, wipe a tear away. And having been a very independent, resourceful person, this is a very difficult situation for him to be in. And being a very demanding, impatient person, this is hard for some of the people taking care of him.

He was glad to see us. Being a captive, immobile (impatient) person (stuck here all the time, he said), we were a welcome addition to his day. Bob has begun eating again. Sunday they served pizza and Bob wanted some. It was good. The first time he had eaten since Thanksgiving. So Jim had brought a tiramisu cake from Fennelli’s. And the meals served him were good. I was happy to feed him.

Finally, towards the end of the day, both Jim and Cynthia left the room and gave me time alone with Bob. It was a wonderful, peaceful time. I massaged his head and neck. We didn’t talk much but there was profound communication. The unspoken, important, lasting kind. And before leaving, we kissed and I caressed his face and told him I love him. He smiled. A proper good-bye.

On the train ride home, Jim and I talked about Bob’s condition, how hard it is to see him, how sad, what an amazing person Bob is and how little luck (as Jim put it) Bob had in his life. How difficult everything was for him and how difficult he was as a person. And how brilliant and enjoyable he could be. Jim also said he didn’t think he could have lived knowing the prognosis. I don’t feel that way. I think facing death is a heightened and immediate part of life: it gives you the opportunity to make amends. It’s like opening a door to a cluttered closet and you can see what you need to clean up, sort out, purify. Death is inevitable for all of us. You have to do it anyway, so you might as well do a good job of it. I know that those last moments with Bob were priceless for me. In many ways, the intervention of the antibiotics, which prolonged his life for (maybe) a couple of more weeks, was a blessing. It gave everyone involved in his life, and hopefully himself, a chance to be more available to his life and death process.

I have an aunt who was paralyzed from the neck down at twenty-one. She was stricken with polio, lived for twenty-five years in an iron lung and she said often she didn’t want anyone to feel sorry for her. She lived a full, generous, rewarding life, enjoying herself and helping others. She was a powerful, self-directed person. She made a beautiful life from adversity. So yes, I think it is possible to take an illness and make it a learning, growing, beneficial experience.

Bob is mostly concerned that there not be too much pain when the time comes. Cynthia is making sure that this will not happen. I came home with some books and CD’s he wanted me to have. It is unlikely he will live more than a week or two longer. But I am so glad he is in such good care and that I had a chance to spend some time with him now.

Posted by leya at December 20, 2005 05:18 PM