Alzheimer's Diary: Wish List

I wish I'd stop holding on to every little
piece of us.
I wish I'd stop making him a Saint.
I wish I'd gone on the doctor's trip to Vietnam with him.

I wish his Silences wouldn't have bothered me.

Once, before Aphasia ruined his speech,
he said he was glad for all of it,
that I kept him on his toes,
really.

I wish Alzheimer's would just go away.

But then he wouldn't be here
and he's still him,
really.

Last Wish List for awhile...

Alzheimer's Diary: Another Day

I didn't think I'd make it there today. I felt like a piece of mush, but the dog kept jumping on me and the mail came with the new DRASH: Northwest Mosaic, including a poem about my mother and the interview I did with Pesha so I pushed myself out the door.

I was afraid to go there and that's not usually the case, afraid more of how I'd be than of how he would be. I think I can handle his condition better than I can handle handling his condition. I didn't want to go there and feel numb or cry. For company and courage, I took Emma. The residents like her, and she behaves well. She licks them. They laugh.

He was sitting on the love seat just staring ahead. Lit up when he saw me. A week or so ago I decided to change my status from caregiver to visitor so I sat down in his upright NY Hospital Intern graduation chair and said, "Hi, I came to visit." But in minutes my head was on his shoulder and Emma was licking and kissing and wondering why I was crying.

I don't know why people say you shouldn't cry when you go there. His eyes twinkled into mine and he recognized me more. We sat for awhile and I got myself back. Even the dog flopped down into her relaxed mode, and Abe had a conversation with me that he really enjoyed. He interspersed medical terminology with almost-words that stuck to his tongue. He was telling me something about the condition of a patient and work going on in the lab. I loved hearing him talk, just the sound of his voice, and he loved watching me watch him talk.

We sat awhile. I picked up a prayer book and we read along together - yes, he read too, sometimes half of a whole sentence! - and we sang The Star Spangled Banner, America the Beautiful, Hatikva and read a few psalms. After about an hour, we said the sh'ma and I said "I'll see you later." We kissed goodbye, smack on the lips. I unscrambled Emma, and walked out the door, just as the caregiver was coming in to take my Sweet to dinner.

Alzheimer's Diary: Catching Up

I haven't posted anything on Alzheimer's since Oct 31, 2007. There's no way I'll be able to catch up so I'll start from now.

I didn't feel the assisted living facility could handle the final stages of Abe's care so last January I moved him to a nursing home. He's well-cared for, the nursing staff is right there with him and the care giver training program appears to be more in tune with the needs of AD sufferers than the for-profit facility where he was.

The journey continues with no end in sight. I requested that the Alz Association create a small Grief Group and it did. Much better for me than the larger 12-20 person group.

I stopped writing about Alz's (though I continued in my handwritten diary) because I was completely overwhelmed by involvement with the disease. I needed to get back to work on my academic research and writing. I've stayed away from making poems because Abe and Alzheimer's contain as much poetry as I can take in a day. I'm already down to the bones.

I've cut out most readings, there's just so much energy, but hope to get to the Roethke reading at UW tonight. Mary Jo Salter and Brad Leithauser are reading and I know nothing of their work. Besides the phone keeps ringing with: "Are you going?" so I better get myself together. I planned not to go to the home today anyway...