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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Music seems to crack open my mind and heart in ways that most anything else cannot.  It is a good thing when it happens.  Needless to say for those who have read this blog, my mode of operation for handling stressful situations is to think my way through them.  I put words together in my mind that frame whatever it is in an intellectual structure that makes it seem more manageable to me. Music seems to dismantle my neatly formed defensive structures and feeling overcomes thinking for a time.

Tonight I listened to music for about an hour and a half, a couple of CD’s.  One was done by a composer named Marty Haugen.  He writes liturgical music. Much of what he writes has a simplicity and a melodic style that is quite disarming.  In my last couple of decades in the ministry, Marty Haugen’s music often found its way into worship services.  The other CD was one in the Celtic Woman series.  My defenses are of absolutely no use in the face of the crystal clear sweetness of those lovely voices.

In her comment on last night’s post, Sharon touched on the one thing that puts into perspective all that we struggle with as full time Caregivers of our spouses.  The time we have with our spouses is of great value against the backdrop of what is coming.  There is no predicting the future.  I may die before Mary Ann.  For most of us in this stage of caregiving, the likelihood is that we will outlive our chronically Ill spouses.

The music tonight cracked open my heart and mind, and that likelihood surfaced.

I spent almost forty years in the business of helping people through times of grieving someone they loved who had died.  I have done more funerals than I can count.  I have buried people of all ages and circumstances from those who died in the womb to those who lived to within days of a hundred years old.  I have buried people who died accidental deaths and people who suffered a violent death at the hands of a perpetrator.  I have buried people who battled long and hard some form of Cancer before they died.  I have buried one of my best friends.  I preached at the funerals of two of Mary Ann’s brothers who died of Cancer, each at the age of fifty-one.  I preached at the Memorial Service for Mary Ann’s Mother.  I preached at my own Mother’s funeral. I know how to do a funeral and how to counsel people in preparation for the funeral and how to minister to them as they grieve afterward.

Tonight, broken open by the music, my thoughts and feelings went to a place of great pain. Just for a moment, I imagined myself sitting in that front pew feeling the deep sadness there.  Then, I suppose because I did it for my Mother-in-Law and my Mom, I pictured myself doing a Memorial Service in Northern Illinois where we grew up.  Many in the family there would not be able to travel to Kansas.  Mary Ann’s very best friends of more than fifty-five years are there, her Sisters-in-law, nephews and nieces who love her very much, my brothers and sisters and their families, are all there or close enough to get there.  I wondered if I could do the service in a way that would center on Mary Ann’s life and not my grief.  Who else would or could do it?  We have been gone from there for almost fifty years.

For those of you who know me personally, please do not be concerned that I am in some sort of deep emotional struggle.  It was simply a time of encountering a potential future reality.  It is a good thing to be able to go there, grieve, and come back from there.  What I encountered there was painful beyond description.  Yes, I have whined about the struggles of taking care of Mary Ann, the frustrations.  I have shared that I get irritated at her and get grumpy sometimes.  I would not give up a moment of it.  I want it to go on for years to come.  We have been married forty-three and a half years.  I plan on at least celebrating fifty years of marriage with her.

Those of us who are caring full time for a spouse with a chronic disease, to be able to function effectively day after day, have to distance ourselves from some of the harsh realities.  On occasion we also need to catch a glimpse of those realities, so that we can gain perspective on the value of the time we have with the one we love. Tonight I caught that glimpse.  I am celebrating the time we have together.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.