Every six months or so, I’d ask her if she was comfortable with her care, if she wanted to continue on. When she was still able to talk, she made it clear that she was NOT going to have this conversation. I’d bring shabbat dinner every week and after some version of asking her her wishes, she wouldn’t speak to me, often for a week at a time. So much for what the books say about “having the conversation”. She wanted no part of it.
Eventually, I realized it was disrespectful to bring it up-just because I wanted to have an end of life discussion, didn’t mean that she did! Eventually she was totally dependent, couldn’t speak, move, etc, but she kept eating. We assumed that when she stopped opening her mouth it would mean she was ready. Well, that time never came.
Finally, after she was unable to even open her eyes to watch t.v., my brother-in-law realized that it was time to pull the plug, and he gave the order to d.c. dialysis and we prepared for her death. But she didn’t die. Instead she lingered in a bizarre state of limbo, not living, not dying. We moved her to a nursing home while she still had some funds because we were afraid that once she ran out of funds, she would wind up in a horrible institution.
She lived ten weeks more, off dialysis, in a very caring institution. As she grew weaker, I spent the last week of her life at her side. Although our relationship had always been very challenging, I found myself able to let go of the anger and be in a place of love. During the last week, we had some incredible conversations with her eyes. When she opened them (rarely), I would jump up and look in her eyes and tell her I loved her. Her eyes shone and a slight smile rested on her face. The years of contention slipped away (I wasn’t a good enough mother for her grandchildren). What was left was a wordless conversation, a connection of pure love. It was a zen moment and one that I will treasure until the end of my days.