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.