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.  

Caring, trouble shooting

August 9: An amazing thing! Margie has started using the walker, finally, thanks to the pt (physical therapist). But I asked the pt why when Margie reaches to take the walker, her left hand quickly grasps the left handle, but with her right she fishes for that handle below it! The pt told me, after noticing that fishing, she watched Margie at lunch and Margie is eating with her left hand! She has always been right handed (she often joshed me for being “wrong handed”). Now the little she does with her hands is left handed! I wonder if another stroke has destroyed her innate handedness — and if so what else? The pt mentioned she ate a banana; she hated bananas! Confirms the neurologist saying her taste was destroyed by a stroke on the CAT. How much of her brain gone!  

July 22: Before visiting Margie check with nurses; Doctor Heather is there who I saw earlier. When I tell of EMS called yesterday they didn’t know. Both say it would have been better for me to take her. That confirms my feeling yesterday. They say some of thoughts I was thinking yesterday. 

July 21: At noon call that Margie has fallen and seemed okay. Then hour later call that she wasn’t acting normal so needed to go to ER. I offered to come get her, as I had before, but no, they’re calling EMS and I’m to meet her at Seton NW ER. When I see her after half hour wait, she is upset and unhappy. Doctor recommends CT scan and neck scan that happens fairly quickly, and as before I stand by her wearing lead apron. This time she is calmer and holds still. For some reason they want further lab tests. Margie throws a full-court, fortissimo four-year old’s temper tantrum with an adult’s strength, trying to rip out all of the wires and tubes. A few nurses come in one at a time to try to get readings, but quickly leave for me to handle her. Finally a nurse comes in who talks to her calmly, gently, calms her, takes necessary readings. Removes all so I can take her back. When I get home, I am worn out, and think her tantrum started with EMS, who were strangers, probably poked her and wired her as they’re supposed to, siren, strange surroundings. If I had taken her to ER, would she have been as calm as prior times? What an ordeal for both of us. 

July 1: Margie walked steady and needed little support. I talked about using a walker, and she assured me she is fine and does not need it. When I told her she had fallen a number of times, she disbelieved. Firm and self-confident – the Margie I’ve loved and enjoyed. But now?

June 30: The last two days Margie was in bed, did not want to get up, and an attendant said she had been very unsteady so they decided to let her stay in bed. Since seeing her yesterday I began thinking about contacting the alternate Alzheimer assisted living (in an earlier post) that has bed care. Is Margie at that stage? Worrisome. Today, however, she was in a chair in the living room, brightened up on seeing me, and signaled with her fingers that she wanted to walk. We did to a bench some distance away and she seemed steady. We talked some, silent some, until sing along started, and joined the group. A nurse came up to us to say the doctor could see Margie, who came in several minutes later, talked to Margie, checked her, then all three of us talked about getting Margie to use a walker. I’ve long tried to, and her physical therapist tried, but stubborn Margie has refused. I hope now as she realizes her unsteadiness that she’ll use her walker.  

June 24: In an earlier post I wrote about how few words that Margie speaks I understand clearly. Many words if I work at it I can decipher, but most I cannot. Often her gestures give me critical clues. When I visit, I find a bench where we sit together with my arm over her shoulder. Now she sits for long minutes without speaking. She’ll touch and stroke me, smile, but no words. Does she realize her speaking is not clear? So now we often sit together in silence for much of the time. Often I’ve thought of something ahead of time to tell her as in an early post, but Margie says little. Singing that Margie loves now goes twice as long. I wonder at how many songs she remembers. Without looking at words she’ll sing for a long time mostly songs from our youth. But when she remembers so little now, why are songs so remembered? 

June 14: Margie is napping in her bed when I get there, but fully dressed. Awake her, gets up, is alert, interested in our walking. After a few yards she feels unsteady, I support more weight than usual, while she holds onto railing on wall. We head for a bench, but as we get there she starts falling; I guide her onto bench for soft landing. We sit and talk, but she says very little. After a while it is time for lunch, so I help her up to go, but she is too unsteady, so I get her back to bench. Go to get nurse, who talks with her, calls a staff person, and one on each side help her to lunch area. Margie seems more stable, but is it because they know best support? After she’s settled, I talk with nurse, who says she may be in decline. I wonder what surprises are next.

June 6: Today seeing her shoes reminded me that over a year ago I noticed that her orthopedic shoes were often not tied, probably from normal walking. I was afraid she might fall, so I watched for the first time she was wearing different shoes, went to her room, took them to the store where she bought them long ago, explained situation, to see what they had in shoes secured with velcro. Found same style, selected larger size since they were now tight. They said if they were still tight, bring them back to try different size. She has worn them almost exclusively since, and always the velcro straps are tight! One time when she fell was wearing sandals she likes, but physical therapist had suggested she avoid them. Next chance I had, I took those sandals home. Have to be eternally vigilant for even small things that I can do to ease her way, while helping her feel appreciated and understood. How is this different from care of a very young child you love deeply?