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.

Love & grief

This afternoon again I went by late enough Margie was dressed and in the wheelchair, so pushed her to where I can sit beside her. I created a playlist of her favorites on my iPod, connect the ear buds so we listen. She nods with some melodies. I hold her hand, stroke her hair as we listen. I wonder if this is the next to last time I’ll feel warmth in her hands or glance. As I leave I remember how we loved and long for love again. Remember some of the Song of Songs. Wonder how much grief work I’ve already done. Feel lonelier.

Skilled nursing

Jan 18 09: This week we moved Margie to skilled nursing where she will have much more attention than she did at assisted living. Now she needs to be checked and turned at night. The hospice folk were very helpful as we decided how to move her and other arrangements. We moved her in our car with our daughter in the back seat, Margie and I in front, and her wheel chair folded in the back of our Prius. Our son followed in his truck so we had multiple vehicles if needed. She made the short trip fine with talk from our daughter and me. After checking Margie in we three stood, somber, hugged each other, talked a little. The next day Margie was asleep, but awoke, recognized me, and a little later attendants came to dress her for lunch, help her into her wheel chair, and I followed them to watch lunch arrangements. I admire their system. Today Margie is in her wheelchair in the hall. She recognizes me, takes my hands, holding and stroking them, no words. I feel somber, somehow more lonely. Does my psyche recognize more deeply the pain I feel. When she talked some, shared thoughts, I felt better, but now….

Decision, lonely decision

I’ve been told Margie needs more care than any Alzheimer assisted living can provide. I’ve noticed her needs recent months and braced for having to move her. I think she is now less sensitive to her surroundings, so it will be easier for her at her level of awareness. Hard to realize that, for the Margie I’ve shared who was sensitive to her surroundings and people around her. I visit a recommended institution. While waiting for the staff to talk with, I wandered around, observing. Staff greeted residents by name and seemed upbeat. I noticed other positives, and no negatives. Call buttons by beds and rest rooms is positive. They have activities scheduled, and will wheel residents to them. These are services Margie needs. In my car I talk with our son about my experience, he asks insightful questions, seems satisfied with the institution. I get our daughter’s phone mail. Margie and I were partners in decision making, working through disagreements. Now it is hard to be the decision maker alone, though our children helpfully share. Is this like our making decisions for our children when very young?

A new joy: iPod

Dec. 22 08: Margie used to so enjoy sing along, why not download some of her favorites to my iPod for her? Did so yesterday, and today took it, told her what I was doing, put one ear bud in one of her ears and the other in one of mine so I can hear what she is hearing, and can sing along. She really enjoyed it.  The experience seemed satisfying enough to her that I will download some more songs. Why didn’t I think of this sooner?