Alertness varies

Saw Margie mid-afternoon, fearing she’d be asleep, but was in her wheelchair. Recognized me a few yards away, started smiling, later tried to say a few words but I understood only one. Wanted to hold and gently squeeze my hands. Responded to our code expressions. Very low key and quiet visit, but satisfying.

Repel boarders!

This morning Margie was unresponsive. I rolled her to the living room-day room that is large, tasteful, many easy chairs, and Margie looked around again and again with the same look as she used to look over our home we designed and had built, and asked, whose house is this? She usually welcomes my holding her hands, but today intertwined her fingers as if to repel boarders. Deeply saddening.

A hug like for a child

Margie was asleep when I saw her today, and slow to awake. No reaction until after a while I encircled her shoulder and side as I did holding our young children, and she smiled broadly! Her eyes glistened with tears. As I left I said the usual “code” and she nodded ever so slightly,

Lower key

Today no response to verbal cues or “our” wave. Only response was to my rubbing her neck and shoulders as I often did. Did she simply enjoy it as from a stranger or did she recognize me?

Low key

Today Margie was very low key. Took the iPod and started several rags on the piano that she used to love; slightest sign on her face when music started, but no nodding or smiling to rhythm as usual. Minimum signs she recognized me. Very discouraging and sad for her as well as for me.

Non-verbal clues

Today Margie was more alert than for months! When several yards away, she looked my way, so I gave “our”wave and she grinned. As I reached her, said “our” greeting and for first time in months wanted a kiss on the lips—just child peck. As we sat beside each other, she almost glowed, smiled, eyes dancing some. Kept looking at me. So glad my social work training made me sensitive to minimal non-verbal clues. Refreshing time with her!

How do I love thee

The hospice nurse and social worker met with me about some questions and concerns I had. One of us mentioned that Margie still lights up when she sees me, then the nurse looked at me, saying, “You know, you light up, too.” First time anyone has said that. I feel a quickening when I see Margie even now in her wheel chair, slumped to one side, looking more dead than alive, knowing she cannot speak. The only expressions from her are holding my hand, sometimes squeezing it gently, sometimes tearing eyes.

Communicating

This morning Margie didn’t seem to recognize me at first, then smiled. Rolled her to where I can sit beside her. She reached out to take my hand, intertwining her fingers as we used to, squeezed my hand, stroked it with her other one, all in silence. I talked softly, reassuring, how I enjoyed her actions and feelings. Earlier I downloaded the words of some songs we both enjoyed, printed them on pocket cards. Yesterday I remembered to bring them, and sang some of the songs softly for her that she really enjoyed. Forgot the cards today, but sang the few lines I remembered. Now communicating is so minimal, so slight, so subtle — a touch, a smile, eyes tearing. I’m torn between decades of rich memories and today’s slight touches.

Micro feelings

Midmornings Margie recognizes me many times. Afternoons seldom lately. A recent afternoon she was a zombie. Next morning she was lively. This morning I feel sure she knew me, squeezed my hands, appreciated a hug, but no longer asks for a peck of a kiss. And this morning for the first time a few tears slowly appeared, as if some feelings could not get out. How horrible to have your own self so frustratingly locked up.

Small expressions

Couple of days ago Margie in her chair recognized me a dozen yards away, smiling, lighting up some, so I wheeled her to where I could sit beside her. We stroked each other’s hands. I ran my fingers through her hair. Such small expressions of affection. Next couple of days she was asleep, and did not respond when I gently tried to awaken her. Today again she was in her chair and smiled wanly when I came close. I asked if she remembered that our son is a red head, and she nodded! I said a few comments about his hair when young. I remembered to bring my iPod, so played some Christmas carols she liked. A few times she nodded to the rhythm, then looked as if she was mouthing a few words. I stroked her hand with some response. So much is achingly gone.