It just sounds like complaining, endless whining. Caregivers are often very boring conversationalists. Someone says, “Hello, how are you?” Caregiver responds, “I was up fifteen times last night and eight times the night before. We slept late in this morning, but I can’t concentrate enough to read anything more than the captions on pictures. Simple tasks seem overwhelming, and by the way, what is your name, and what is it that you just asked me?”
Last night was a moderately restless night for Mary Ann. We were up maybe once in each hour during the night for one thing or another. That pattern is more bearable than the really restless nights when it is multiple times throughout the night. She got up early this morning, but napped for a couple of hours. It just doesn’t seem to work for me to try to turn on the napping switch and sleep whenever she takes a nap during the day. Anyway, I relish the time to do the things I can’t do when she is awake and in need of help.
The truth is, there is no way to communicate to anyone who isn’t in the same circumstances just how hard it is to get pretty much of anything done when the sleep patterns are completely erratic, with no ability to plan when there will be sleep and when there won’t be sleep.
While I was on the retreat in Oklahoma, our Daughter Lisa stayed with Mary Ann. The first of the two nights, Mary Ann was very restless, and Lisa didn’t get much sleep. Mary Ann was up early as she usually is after a restless night . The next night, they both slept like a rock and slept late into the morning. When we talked after I returned, it was apparent that she had a sense of what it is like to have the kind of erratic sleep patterns that are our normal experience. She, of course has two young children and knows what is it like to have difficult nights and little sleep.
It is just nice to have someone in the circle of support who understands how hard it is to plan and do anything when there is no sleep pattern. One of the reasons that I enjoy the trip to the Spiritual Renewal Center is that the many hours of uninterrupted sleep seem to return my ability to read and understand what I am reading. I can’t say that I have read any of the book on Quantum Physics and Theology other than on the Oklahoma Retreats. I often feel embarrassed at how little I manage to get done each day, and how poor my memory has become. I am hoping that both are a function of the sleep patterns rather than the disintegration of my brain.
One of the problems the lack of sleep increases in Mary Ann is the intensity of the hallucinations. I have mentioned that often before. Today, she got up and headed toward the bedroom. I asked what she was doing. She was reluctant to tell me, probably not wanting to hear my opinion on whether or not she should be trying to do what she was planning. She was going in so that she could sew a button on. I don’t know what button needed to be sewn on to what. She had just asked me to help her take off a corduroy shirt of mine that she uses as a warm layer to wear when she is cold. After I took it off, she hung on to it, rather than letting me put it on the railing post, as usual. I inferred that she had in her mind that there was a button that needed sewing back on that shirt. There were no buttons missing.
I did not interfere with her plan. I decided I would only intervene if she ended up with a needle in her hand and was hurting herself. I stayed out of the bedroom as much as possible while she got out some balls of thread (probably more for cross stitching or something like that) and handled them for a while. I never saw a needle in her hand. I just waited it out, helping a little when the thread on a couple of the balls got tangled.
I still don’t know exactly what was in her mind, nor do I know what went through her mind as she finally put the balls of thread back into the drawer and gave up on the plan. I do know that it is painful to watch her confront the losses she has been suffering for so many years. The losses have been going on for twenty-two years in one way or another, sometimes more slowly than at other times. Today was one of the times the contrast was especially obvious between the skilled sewing (made our first drapes, has made many quilts) she has done in the past and the inability to so much as get a needle, the thread and sew on a button — as well as the confusion about what was or was not there needing the sewing.
While I am busy complaining about the frustrating sleep patterns, she is busy trying to survive the loss of so much of what brought her joy and satisfaction throughout her life. I guess I just need to finish this and get to bed so that I will have less to complain about. So far tonight she has stayed asleep. We will see how the rest of the night goes.
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The Caregiver Calling 