She is sleeping; I am thinking about Hospice.
She has been sleeping for 24hours other than about an hour doing food and pills this morning (about 11:30am) and one trip to the bathroom this afternoon. I wake her enough to give her the 1/2 Sinamet every two hours. That pill is for keeping mobility. While she hardly needs mobility when sleeping, without the Sinamet, she stiffens up and becomes very uncomfortable.
I have now found something that I can cook for Mary Ann that she seems to like very much. I do a very skillful job, and the result, I must admit is very tasty. I get a slice of bread out of the package, toast it to perfection, butter the toast from corner to corner, slather on some super-chunk chunky peanut butter and top it with some of Maureen’s homemade preserves. I cut it into quarters and hope I don’t get my fingers bitten as I help her eat it.
She had juice, a container of yogurt, the PBJ on toast, and that is all in the last 24 hours. So far I have not been able to get her to get up even for a commode trip, let alone some supper. It may happen yet. It is 8pm at the moment.
It just popped into my mind that this is sort of like riding some sort of tilt-a-whirl. I almost go crazy with the hallucinations, praying that she will take a nap, and my heart sinks when she sleeps so long, fearing that she is not going to get up. We have been on this ride long enough, that I don’t lose my bearings as we swing one way and then the other, but I have to tell you it sure isn’t as much fun as riding the tilt-a-whirl (not that I can remember riding one — I probably would have thrown up — I was mostly a roller coaster guy in my younger years).
While she has been sleeping, I have been thinking, or maybe it would be more accurate to say, feeling. So many times in my ministry I have tried to help people deal with hearing the word “Cancer” in a diagnosis. Minds immediately fly to the worst case scenerio for how things will go. While that may be the way things go, the word “Cancer” spoken as a diagnosis does not determine an outcome. It has implications for outcomes, but ask any Cancer survivor about some of those possible outcomes.
Well, the word “Hospice” carries with it for me the weght of many visits to people in our local Hospice House, whose stay most often varies from hours to days, and then they are gone. I have ministered to people for forty years with most of those entering a hospice program reaching the end of their lives not long thereafter. While I realize intellectually that there are folks who have been enrolled in hospice programs for years, my gut has no clue about that.
In addition to the gut reaction, there is the harsh reality that Mary Ann has been declining at what seems like breakneck speed. She has bounced back from so many medical problems that would have taken someone with less strength of will, part of me is just waiting for her to rally, as usual.
This time she seems to be moving past the point of being able to return to the level of functionality we enjoyed just a few months ago. I will happily eat those words if a week from now she is her old feisty self.
Today, as I had time to immerse myself in the implications of “Hospice,” I did what I usually do, what I think should be done, I felt the feelings that come with the potential loss. I grieved. I have been down this road before, more than once. The memory that surfaced today was the memory of sitting in an empty emergency room about four years ago at a hospital in Tucson, Arizona, while Mary Ann was somewhere else in the hospital receiving a test of some sort.
We had flown to Tucson to attend a gathering of Lutheran Seniors at a large retreat center there. On the plane trip down, Mary Ann began having some congestion, I am convinced due to the poor air quality in the airplane. As the days went by, it got worse until we decided to call an ambulance. I remember looking back from the passenger seat of the ambulance to see the one EMT in the back trying to deal with Mary Ann’s arms and legs flying this way and that, because of the dyskinetic movements produced by the Parkinson’s meds.
As I sat in that empty emergency room, a thousand miles away from anyone I knew, any family, the doctor and nurse had just left. The doctor told me that the X-ray had shown her lungs to be completely white. She would most likely be on a ventilator by morning. I asked if it was time to phone the kids to get them to come, implying, of course that otherwise they would not see her before she died. The answer was, of course, yes. I called them. They each got on a plane and came, Lisa bringing a little one with her.
I had what seems like an eternity in that room, sitting by myself. The feelings were powerful, the moment surreal. Today, I remembered what it felt like to think about losing Mary Ann. I have written at least one post almost a year ago that included a desrciption of some time thinking about her eventual departure. While a few hours from now Mary Ann may be irritating the Hell out of me getting up and down and up and down (which at this point I think I would celebrate), it seems very possible that we are approaching the beginning of the end.
I need to tell you that my heart is aching as I am writing those words. I don’t mean to sound dramatic. I will be fine. I am just describing feelings as I am experiencing them. This is what it means to be alive! Mary Ann is still alive and may be for a long time. If she is not, if I am not, it is still all right. We are secure beyond our time here.
She just got up to use the bathroom and get a drink of water. She was not hungry and is in bed again. It is about 9pm. She was lucid and did not seem to be hallucinating.
After a while, I put on the CD by Lisa Kelly, one of the Celtic Woman group. As I listened to it again, most of what is on it is relevant for someone thinking about a life’s partner, as well as the need to let go and the challenges associated with doing so. In the song “May It Be” there is a refrain, “a promise lives within you now.” As I listened to music that resonated with my feelings, I thought about how trite and shallow and sentimental music can be when it seeks to manipulate the feelings of listeners. I realized that what makes such music meaningful is only real life, lived with all the struggles and mundane tasks adding depth to what could be shallow and meaningless.
Let me say it this way. With all my self-doubt and lack of confidence, painful flaws and weaknesses, guilt feelings about all that I have not done that I should, especially in showing Mary Ann and my Children how much I love them — with all of that said, I am keeping my promise to Mary Ann. That promise lives within me now and it is not just a feeling. It is being lived hour by hour and day by day. I hope at some level Mary Ann feels secure in that promise.
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The Caregiver Calling 