Friday, January 27, 2012


I made the trek over the lake to visit Dad today. They had just finished lunch in his house, and he was still sitting at the table, staring out the window, with a cup of fruit juice in front of him. After exchanging some news and business with his caregiver, I sat down at the table and he looked over at me. I said hello and smiled at him and asked how he was. He's been relatively talkative lately, so I wasn't surprised when he actually answered me and said he was fine. What did surprise me was the recognition I thought I saw in his face and eyes.

For a year or so now, I've been fairly certain that he no longer really knows who I am. My close friends ask me often whether he recognizes me and I usually respond that while I think he may know he has a connection of some kind to me, he no longer knows my specific place in his life. On his bad days, I think he views me suspiciously as one more person there to make him do something he won't like. In the last few months, however, I've mad a real effort to visit as often as I can, and I think it may be having an effect!

Today we actually almost had a conversation. His caregiver can't resist coming over when I'm there and interacting with Dad, showing me, I think, that Dad is still present and that the caregivers are trying to keep him that way. It puzzles him that both Dad and I are not the most talkative of people, preferring usually to listen when we're in big groups. He and I have spent hours together with only a few words exchanged, and I think existing together is just as important as expounding. So today Dad was almost talkative, and he kept looking at me-and when he did I smiled at him and looked into his eyes so he could see that they were exactly like his. And each time I smiled, he smiled a small smile back. I don't think I've actually seen him smile-at me- for a very long time.

Do I think he knew me? I can't say; it seemed like he may have. And while I tell my friends. mostly honestly, that its okay that he doesn't know me any more, that I've done my grieving about it. I have to admit how lovely it was to see that tiny possible spark of recognition, or at least what I like to believe was recognition.

Saturday, January 21, 2012


I've been exploring various hospice and bereavement organizations, including those under religious organizations. Not being a fan of organized religion, I'm drawn to Zen-Buddhist Hospice, a growing group of people who are providing mindful end-of-life care and bereavement counseling under the auspices and beliefs of Zen Buddhism. There is an established community in Santa Fe, called Upaya, that, among other things, teaches mindful presence with death.

I've been reading their book, Being With Dying, written by founder Joan Halifax, and I'm appreciating their calm, present, mindful take on witnessing for the dying and their families. She tells stories of families she's been with, provides various meditation practices, and recommends ways in which Witnesses, and family members, can be of service to the dying. One very important section caught my attention; allowing the dying to tell their stories at the end, however they can.

I think its so important to hear everyone's stories, not just those who are dying-their situations, of course, have a particular urgency. I have quite often now listened to the tales of people who were dying-it is an honorable part of my work, and once or twice, of my relationship to the dying. But it strikes me that my Father won't be able to tell his stories at the end. Even now he has few words, and soon enough he'll have none. The dementia has stolen that from him, as it has for so many others. When I cared for him, I listened as hard as I could, trying to get him to tell me the few things he remembered or would talk about. He never was much of a talker, so I don't have much, and I never will.

I know there are many who feel the same grief I have, their family members suffering the same fate. This disease steals so much from so many. It saddens me that he won't be able to tell his stories at the end. He will go gentle into that good night- gentle, and quiet.

Friday, January 13, 2012

The More Things Change...

I set up a meeting with Dad's caregiver the other day because he told me there were some new issues that needed to be discussed. I had planned to go over and visit Dad anyway, so we arranged to meet after I had spent some time with Dad. I thought Dad might like to see our wedding pictures, so I brought them over. I did try to show them to him, but he doesn't look at anything very long anymore, so I didn't spend too long with them.

I was a little apprehensive about what the caregiver would have to tell me, considering Dad's care and needs had continued unchanged for quite a while-or, at least I thought they had. I was dismayed to learn that some of the agitation and aggression that had caused us to move him in the first place had returned. The behavior wasn't nearly as bad as it had been at the big facility, but when he got confused or felt too managed, the stubbornness and anger emerged. Apparently, a chair had even been thrown. I couldn't help being curious, so I asked what kind of chair, curious to know how strong he still was. It was a dining room chair, evidently.

Hearing this caused the old fears to resurface that he wouldn't be welcome here anymore-or anywhere- and that I would be left with no choices about where to house him. I was reassured to hear from the caregiver how much they loved Dad, that they were familiar with his modes of behavior and were committed to getting him through without drugging him up too much, something I have very strong feelings about. In the end, the fee for Dad's care was raised, and we came up with a few other solutions that would help make things easier for the caregivers, but there was no question of him remaining in what had now become his home.

I guess it may have been naive to imagine all the bad behavior had gone for good. I was hoping that we had solved the problem, and I think we did for a while, it's just the way his disease is affecting him. So while I am grateful every day to his caregivers for their compassion and care of my father, I can't help being apprehensive about what feels like a new phase we're moving into. It hasn't exactly been easy going so far, but it feels like things might be about to get even harder

Friday, January 6, 2012


I've been meaning to post, plus I'm doing a little updating of my site, but then I got the sickness! That stuff takes you out...

Paul and I had a lovely Christmas Eve and Christmas together-we hung out all day in our sweats and ate and watched tv and read. It was great. It was nice to take the weekend for ourselves and just rest up and relax. On Monday, we packed up some clothes I had bought for Dad and a toy for the little girl who belongs to the live-in caregivers. She's two or so and just adorable. Apparently, Dad really responds to her.

When we got into Dad's room, he was snoozing in his chair, and he didn't wake up, even though we were being a little loud. I figured he must really be sleeping so I let him be, and we watched as the little girl opened her gift right at his feet. After a bit, Dad's eyes opened and he looked at me. People still ask me, all the time, whether I think he recognizes me, and I just cannot tell. Sometimes it seems like his eyes sharpen up a little, but I really don't know. I say that it doesn't really bother me, but sometimes it does, just a little.

Anyway, I said hello and said he was looking good and he even responded a little. I think he still has a store of phrases that he uses to answer something that sounds like a question. He really responded to Paul and I've seen that before. There's something about Paul's face or demeanor or voice that really catches Dad's attention, in a good way. And Paul's so great, he'll talk to anyone, about anything; usually he talks to Dad about our vintage Corvair.

So there we were, me, Paul, Dad, and a toddler, busy with My Little Pony, all enjoying a little time together after Christmas. It felt like Christmases of old, with wrapping paper and bits of toy scattered around the carpet. It felt good to be there with Dad- I have no idea how this year is going to pan out, or whether he'll get even more frail and unresponsive. This could be the last Christmas, and I'm glad we all got a little time together.