Wednesday, January 31, 2018

Visiting Dad, Day 6

The reason I never give up hope is that everything is so basically hopeless. Hopelessness underscores everything--the deep sadness and fear at the center of life, the holes in the hearts of our families, the animal confusion within us; the madness of King George. But when you do give up hope, a lot can happen. When it's not pinned wriggling onto a shiny image or expectation, it sometimes floats forth and opens like one of those fluted Japanese blossoms, flimsy and spastic, bright and warm. This almost always seems to happen in community: with family, related by blood or chosen; at church for me; and at peace marches.
--Anne Lamott, Small Victories

Seeing dad today was good and different. Good because he was in a very good mood, different because I realized his desire to sleep most of the day has become central to his life. This wasn't a new realization, as I recognized the importance of sleep to him last week. No, I think the important thing was my discovery that this is primarily his life. It's not a bad life, I think he's as content as he's ever been. But I think too that I'm finding that I need to not only to accept it but to live with it as well as he has. I must be as all right with his life and the way he lives it as he is. Can I be? Yes, I will have to be.

Tuesday, January 30, 2018

Visiting Dad, Day 5

Well, it's not really the fifth day of seeing my father. Actually, it's the ninth day in real time, but the fifth in terms of arriving, then leaving for several days to visit my sister in New York, and then returning to see dad. I arrived back in his part of Pennsylvania around four o'clock this afternoon, checked into the motel where I often stay because of both its cheapness and its proximity to dad's nursing facility. Then I walked over to see him. I was surprised because he was awake and alert and sitting in the hallway. He recognized me immediately and had even remembered I was returning to see him (although he'd forgotten the day). I sat with him and we talked for a bit about small things: the weather, his sweater, how he felt. I walked him to the dining room and then we discussed when I'd come back tomorrow, and then returned to my motel room to watch nerdy TV.

What I did while I was away: I spent Friday until this morning with my sister and her family, eating, drinking, watching pro wrestling with my niece and nephew, going out to dinner, napping. During the time I spent a day visiting an old friend back where I grew up who had a stroke a year ago and remains in a rehab facility. On my way there, I wandered along the Red Trail at James Baird State Park.

I spent another day in my old haunts in New Paltz where I ran into several old friends while walking on the Wallkill Valley Rail Trail, hung out in one of the places I most enjoyed as someone with a lot of time to kill, then visited the wife of another friend who is in Italy. It was wonderful, one of those days which, if it's true heaven is where you spend eternity reliving the most pleasurable day of your life, would be among the top twenty.

In addition, I operated a little Grammar Nazi monkeywrenching on a not-so-innocent sandwich board along the road.
 

But, because I think when people who live the type of life we live get together to catch up there is always the stories about the lost and the dead, I also learned of the sad end of a friend of mine from so long ago. This is the story the locals managed to cobble together.


Thursday, January 25, 2018

Visiting Dad, Day 4

Today went well but didn't have much going on. Dad was in bed napping when I arrived and woke after about a half hour. He spoke for a while, and then drifted to sleep off and on. Much of the time when he wasn't sleeping he lay on his back watching the birds, mostly nuthatches and chickadees, eat from the feeder outside his window. When I'd filled it I'd also strewn seed along the window sill. He'd grin and say, Oh!, when a dark head popped up and seemed to peek in at us.

About 330 he woke up again, this time saying, Did you tell me my brother Georgie died? Yes, Dad, I said. So that means there's only two of us left? Two out of six? It's just me and Carroll. Yes, Dad, you and Carroll are the only two left. He laid back again and said, Oh, Carroll, I don't know. It's so hard.

I said, I know it's hard, Dad. But I'm Bobby, not Carroll. He leaned up on one elbow. You're not Carroll? No, I'm Bobby. Your son, Bobby. You're Bobby? You're not Bobby. Yes, Dad, I'm your son, Bobby. You're sure? Yes, Dad, I'm sure.

That's when he laid back down again and said, Oh, Bobby, I don't know. For the rest of our afternoon he knew who I was.

Wednesday, January 24, 2018

Visiting Dad, Day 3

I like Anne Lamott books. The first I read was Bird by Bird, which is an excellent book about writing and one I really enjoyed. Her books I read most, and find most enjoyable, are her religious books. Traveling Mercies, Plan B, Grace (Eventually). These have not only given me comfort but have resonated with what Mary Oliver has called "the soft animal" in me.

This interests me from a separate perspective, because Lamott professes to a Christianity I'm not entirely comfortable with. It is, to be sure, a liberal Christianity but focuses too much on a personal interaction with God as well as an insistence on Jesus' divinity and, frankly, on her own history of drug and alcohol overuse as both the way she came to religion and the reason she continues, as if a missed daily prayer might be replaced by a shot of vodka.

But that's my issue and not hers. So I have been reading Small Victories: Spotting Improbable Moments of Grace while sitting with Dad since he spends most of the hours I'm with him sleeping. Today, I sat with him while he slept for an hour and then joined my cousin for a care conference about him. There wasn't much of anything new to be learned. He continues to decline, has gained and lost about ten pounds since I saw him last, and is continuing to lose his recognition of people close to him (although he also regains it, at least with me, by being with him). He has at least two urinary tract infections each year, which according to the RN, may be caused by his having been colonized by UTI bacteria, so that infection is more his regular state than noninfection.

No one, least of all my dad, thinks he will "improve" or "get better." We are all aware, at least intellectually, that we will reach his same state. Dad, so far as I'm aware, has never been unaware of this. My cousin recounted how he will sometimes cry, saying he wishes he had a gun and could be done with it all, and he said the same to me at one point this afternoon. It's not a sentiment I'm unfamiliar with, not having felt it myself (not yet, anyway), but something I've heard from slowly dying patients. But as I read in Small Victories, "Redefinition is a nightmare--we think we've arrived...and that this or that is true. Then something happens that totally sucks...and it is like changing into clothes that don't fit, that we hate. Yet the essence remains. Essence is malleable, fluid. Everything we lose is Buddhist truth--one more thing that you don't have to grab with your death grip, and protect from theft or decay. It's gone. We can mourn it, but we don't have to get down in the grave with it."

Tuesday, January 23, 2018

Visiting Dad, Day 2

Today I saw Dad at 10 this morning but he was asleep and stayed that way for the 20 or so minutes I remained with him. I left a note for him, saying I'd be back at 1:30. When I returned, he was awake and being wheeled to a bingo game. We sat in the little soda shop at the end of the hallway. In contrast to how he was yesterday, he wasn't sure either who I was, and as I realized a little later, who he was. He did ask whether I was his son, and I told him yes. He asked more questions about his brothers (I had told him yesterday his next eldest brother had died last year, which his daughter, my cousin, had told him shortly after the event but didn't think he'd understood), and finally asked, Are you Harold? I said, No, you're Harold. I'm Bobby, your son.

We were offered sherbet and he ate about half the cupful. It seemed to make a change in him; he had been itching and when I came back with lotion from his room, he called me Bobby and said he was tired and wanted to lie down. I agreed, but said first we should look at the bingo game. We did; he said he'd still like to lie down. On our way to his room, two RNs asked him to walk for a bit with his walker. Dad agreed, reluctantly. He stood with help and used the walker to walk, slowly and with some pain, about 15 or 20 yards down the hallway. I told him I was very proud of him and he said, My legs hurt. So I took him to his room, helped him into bed, and he sank into deep slumber. But before he did he reached out for my hand.

Monday, January 22, 2018

Visiting Dad, Day 1

He didn't recognize me last night when I arrived.

My dad has been in a nursing facility for nearly three years, since he had his first series of strokes a few years after my mother died. I get out here in the Thick a few times a year in order to visit him. In addition to his illness he also has a mass growing on his brain, which may or may not be cancerous. It's not in his best interest, at his advanced age and physical frailty, to have it surgically looked at or removed, so his dementia, which is advancing and may or may not be connected to the mass, takes from him small bits of memory and control daily.

I last visited him early last summer, before my detached retina limited my ability to travel, and planned to visit again in late November for two weeks. However, I've been covering two regions since September when another chaplain left, and so there was no one to cover my vacation. So I have waited until January to come here. I'm here for two weeks and may take note of each day or I may not. Like so much of life after a loved one is diagnosed with a terminal illness, I will take it all a day, even an hour, at a time.

To be fair, he had been asleep when I arrived, although per his aides, he had been talking with them about my visit all day. But he looked at me like he might look at any stranger who showed up in his room and it took at least fifteen minutes and several hints before he said my name himself. Even then, he seemed unable to accept or understand that I was there. But he let me help him back into bed and kiss him and tell him good night, and he said he loved me too.

I left a note beside his bed telling him when I would return today, a practice I learned helps lessen his anxiety and confusion as to whether I had been there or he was dreaming, whether I was returning, or if I had gone home yet. I went back there at one this afternoon. He was asleep again--as he's aged he spends a lot of time sleeping--and woke immediately when I touched his arm and said his name. This time he not only knew me, said my name at once, and struggled to sit up. I helped him sit up and then to make it into his wheelchair.

I asked if he wanted to go to the hallway to look out the window and talk, but he shook his head and said, Stay here. So for the next couple hours we sat in his room together, sometimes talking, more often just sitting quietly. Occasionally we both fell asleep for a bit, after which when he woke he asked me to help him into bed again. He lay there, falling asleep a few more times while I sat in the chair next to his bed reading.

Finally, we had the period I'd hoped for. He woke, looked at me, grinned like he used to, and hit my arm on that side, saying, You! Then he talked about growing older and getting sicker and how difficult it was. I'm tired, he said. I'm tired. I knew he meant more than just at the moment. It's the same "I'm tired" I've heard from dozens of hospice patients. "I'm tired of suffering indignities, I'm tired of pissing and shitting in my pants, I'm tired of living life a few waking hours at a time." I told him I figure I'll say the same when I'm his age and he grinned again, like he used to, and said, Yes, you will.

It was a good conversation for the little while it lasted, maybe ten minutes, and then he drifted off again. But before he did I told him I'd come back in the morning and spend time with him again.

Tuesday, January 2, 2018

Giving Praise in a Quiet Way

I've been thinking about how to welcome--and I do mean it, the welcome--in the new year with some positive spark lighting up the void surrounding it, and this song does it for me. I've written a sermon about it before, but here I'm just going to post the video and lyrics. Let it wash over you and see if you can stop from smiling.


The Sing by Bill Callahan
Drinking while sleeping strangers
Unknowingly keep me company
In the hotel bar
Looking out a window that isn't there
Looking at the carpet and the chairs
Well, the only words I said today are "beer" and "thank you"
Beer, thank you
Beer, thank you
Beer
Giving praise in a quiet way
Like a church
Like a church
Like a church that's far away
I've got limitations like Marvin Gaye
Mortal joy is that way
Outside a train sings its wail song
To a long, long train long, long fone
Then silence comes back alone
High as scaffolding
'Til the wind finds something to ping
When the pinging thing finds the wind
We're all looking for a body
Or a means to make one sing