Hospice

Sitting with dad while he naps and i quietly read from the original Winnie the Pooh. This book has been a part of my life forever and always a joy in my family, reading favorite passages out loud while drinking tea and sitting by the fire on many Fall and winter nights. This is such a strange time. Both peaceful and incredibly sad. Watching someone you love slip away is the most surreal thing imaginable. I hope he hears me. Sometimes he squeezes my hand in his sleep. "When you wake up in the morning, Pooh," said piglet at last, "what's the first thing you say to yourself?" "What's for breakfast?" Said Pooh. "What do you say piglet?" "I say, i wonder what's going to happen exciting today?" Said piglet Pooh nodded thoughtfully. "Its the same thing," he said.

My father spent 3 months in hospice before he died. I count myself very lucky, which still is a difficult thing to say, that he didn't linger longer. Its a very conflicting feeling to watch the person you love fade and wanting more time but knowing that they are suffering and desperately wanting that to end.

"Don't go....but I know you have to." I would say, more to myself than anyone else. The rational part of your brain doesn't want to watch them slip away bit by bit, but you know that they aren't really there by the end. I felt a lot of guilt about not wanting a prolonged hospice time. I wanted more time but not that kind of time. Not the failing body and finally the failing mind. I wanted time sitting in the kitchen drinking tea, or reading poetry by the fireplace. That was Dad, not the person trapped in the prison of his rapidly failing body. His mind became his refuge and more and more the alternate reality he created replaced what was truly happening.

This was maybe the most difficult part for us. My step mother Sherry and I didn't have him as an active partner in his own dying. He really didn't or couldn't see this was the end and of course we didn't want to push it into our short remaining time with him. It is a very painful part that you play, keeping a smile up while visiting, hearing him say things like "I wonder when I'll be able to go home? These damn nurses don't know what they're doing, every day they seem to make me worse!" You hug him goodbye and say that you'll be back soon and then quickly flee to the car as the tears start to stream down your face, burning a well worn track on your cheeks.

There wasn't much option but to try and find humor in some of the sadness. I went to visit and he said to me "I knew there would be visitors today so I spent the whole morning cleaning up the apartment, but then the bed looked so comfortable that I got back in!" He had not been able to get out of bed for several weeks at this point but routinely had these elaborate alternate reality spells. The first distortions were sunrise and sunset and he would often wake up very early in the morning and not realize that it was 5am and not 5pm. He once called me at 5am while I was in the shower getting ready for work and I grabbed the phone fearing the worst and he says "I don't think these people know what the hell they're doing. They just brought me dinner for breakfast! What do I look like, some god damn Viking that wants to eat cold salmon for breakfast!" He was looking at the tray from dinner 12 hours ago that he hadn't eaten. Side note, the staff did often leave food sitting in his room and were not helpful in getting him to eat. They wanted him on a no salt diet and we told them, "Who cares at this point! Give the man a salt lick if he wants!" A no salt diet would have been helpful 20 years ago.

Despite the deteriorating body and mind and the difficulties of visits, I was still lucky to get that time. There was still bits of Dad that I got to enjoy. Sitting and eating pistachios together, talking about the history and origins of pistachios. "Did you know they came from Iran and they used to dye them red? I had a graduate student from Iran and we invited him over for dinner and he was a day late! They have a more relaxed relationship with time in that part of the world. He showed up to school every day in a limo. I think he was an exiled prince of some sort."