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.
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?
Hospice care
Thanksgiving 08
Is this the last Thanksgiving “with” Margie? I am thankful and thanks-filled that yesterday she immediately recognized me, smiled, her eyes almost dancing with joy. When I placed my hand gently on her’s, she reached across with her other hand to lay it on mine. She motioned she wanted a kiss, and we kissed as I kissed our three year olds with just a peck, instead of the passionate deep kisses of years ago. She jabbered some in meaningless sounds, but mostly we just sat side by side. I’ve reflected on what I am grateful for in her recognizing me and expressing love, and in my self—creating on my web site, preparing and leading seminars, enjoying concerts with friends, long talks with friends, reading, music, exercise. This noon our two kids and I will meet at our daughter’s home who is preparing the sides, while I heat the smoked turkey in our oven. As I cleaned the roaster in the sink I remembered the builders for our house called it her turkey sink, because she wanted a sink with a large area and a small one, so she could prepare a turkey—she never did. Two wonderful, profound, thinking, mature kids will share dinner with me, and I’ll be a thankful dad.
Nov 13 08: For two days Margie was asleep in her wheel chair when I went by. I gently touched her hands, then stroked her hands, but she gave no response. I sat beside her for a while, but clearly she was not going to awaken, so I left. The third day she was dozing, but opened her eyes for a few minutes, smiling, before dozing off again. Leaving her I ran into Nancy, who is in charge of activities, who said she had brought a dog down to Margie earlier that day when Margie was awake, and she really enjoyed playing with the dog as she sat in her wheelchair. Months ago when still walking she really enjoyed therapy dogs. Today the chaplain from hospice, Richard, came by. I gave him the chair I was in beside Margie. After chatting with Margie he offered to sing some hymns, and Margie sang some of the words with him. I have sung some with her a few times—songs of our college and youth days. I will try familiar hymns.
Oct. 12: Hospice furnished a nice wheelchair several days ago, and the last few days some special pillows to support Margie. Two days ago she stopped leaning to the right, and sat straight, but the next day she was in bed, asleep when I walked into her room. I waited by her bed; after a while she opened her eyes, smiled, then fell back to sleep. Today she was in the wheelchair again but more alert, indicated she wanted a kiss on the lips more than once – a 3-year old’s kiss. Talked more. I stayed longer than usual. Recent weeks when I could not understand what she said I responded with non-committal words like “could be,” “maybe,” others to give the impression I understand and respond. She looks as if that satisfies her. I wish I could understand!
Sept. 25: The last several days Margie has been in a wheelchair. She continues leaning to the right and unable to straighten. Her speech is harder to understand, and she speaks very little; does she realize she is not clear? Or tired? Discouraged? Today for the first time in a year she twice ran her hand through my hair. For years she did that in affection; was she arranging my hair or expressing her love? In any case I really enjoyed it, and showed my appreciation.
Our kids support in many ways unrelated to Margie. Tonight our daughter took me to a political fund raiser, c&w music program, and buffet that was a very enjoyable event and company. Then an email from our son that pro and con mean opposites; what does that say about progress and congress?
Sept. 20: Hospice phoned few days ago to make an appointment to get basic information and for me to sign agreements for services. Intake worker explained services and answered questions. As soon as I signed, she phoned the intake nurse to go see Margie’s records and visit with her. The next day the social worker assigned to Margie called me to introduce himself and make an appointment, and later her case manager/nurse called. I’m impressed hospice is getting started quickly and efficiently. This afternoon when I went by she was in an armchair leaning heavily onto the right arm, trying to straighten up but unable to despite effort. I tried to help her but we could not. She seems even weaker. I left worried by her weakness and minimal talking. She recognized me and lightly patted and stroked my hand – with her left hand, she who was always right handed!
Sept. 10: This afternoon Margie’s doctor called and we talked at length about several things. He reported her right side is weaker and results of it, indicating she may have had another stroke. I responded that she has always been right handed but is now eating with her left hand, and he said that supports a possible stroke. Concluded by recommending hospice care with one of the local hospices. I looked it up on the web where they have a concise summary of services that helped. Given her condition I am not surprised. I will make an appointment with my therapist and talk with my support group. That sounds too clinical, yet all through my care giving I have been lover and husband but also looking at events and feelings as a social worker. And I think I’ve been a better caregiver as both are interacting.
