I just couldn’t stop and go to bed.  I needed, I NEEDED, to empty the bedroom of everything I could find that reminded me of what we have been through with the Parkinson’s .  Gratefully, the Hospice folks had taken all the medicine bottles and the items they brought that were of no further use to us now that Mary Ann is free of the damned disease.  It did its worst, and she still won.  She has let go of it so that it has no power over her any longer.  She has a life that is as free as a butterfly, a favorite image of hers, especially in the early years.

I am not about to let the Parkinson’s Disease and the Parkinson’s Disease Dementia (a Dementia with Lewy Bodies) remain the dominant feature of our lives any more.  Pretending it never happened would be silly and deny who we became as we faced it down and refused to let it steal from us meaning and joy and fulfillment.  With that said, I don’t have to allow it to come along any longer on my journey, just as she no longer has its company in her new life.

For both of us, we now are living life after Parkinson’s.  I stripped the bed and put on fresh bedding.  At this point, I don’t even remember all the things I threw away — nothing that needed to be kept any longer.  Finally, I went to bed.  It was a fitful sleep, up a couple of times, now for no good reason.  This morning beginning at about 4:30am, my mind started working.  Every time I thought of something that I needed to do, I got up headed down the hall to my office, wrote it down and came back to bed.  I did that four or five times between then and a little before 7am.

Today has included lots of tasks.  Throughout the day, I have been reading comments on this blog and on Facebook that have provided comfort and the recognition that we are not going through this alone.  We have welcomed more food and enjoyed eating part or most of much of it, while freezing for later what we cannot consume now.  There are some really fine cooks in our circle of support.  I was able to get a much needed freely given haircut from friend and former parishioner Doug this afternoon.  Marikay’s Volunteering with Mary Ann was doing her hair there at their shop.

Son Micah wrote the obituary for us this morning so that we could take it with us to meet with Pat the Funeral Director working with us.  As I mentioned in last night’s post we were treated more like friends than clients as we went through all the necessary steps.  Having made the arrangements in advance seven years ago, it was a relatively painless process.  It still took a couple of hours to go through all the paperwork that is required.  The web site with Mary Ann’s obituary is http://www.penwellgabeltopeka.com.  Enter Mary Ann Tremain in the search box and then when her name comes up, click on her name to see the obituary.  I think the link we provided on Facebook will take you right to it in one step. Having done the pre-need plan at the cemetery, that visit was only a few minutes.

We stopped at church for a while.  The Staff there was a sort of family for the over twelve years I served there.  They listened as I shared the daily struggles.  They provided a wonderful, nurturing community.  We dropped off what has turned out to be an elegantly done, indescribably beautiful book mark that will serve as a thank you to those who have volunteered in any way to help Mary Ann over the years.

The main reason for stopping at the church was to talk about the music with Young, the Director of Worship and the Organist.  She led us to the balcony and sat down at the console to play some of what she will use as processional and recessional music as well as a hymn prelude and accompaniment.  I have absolutely no defense mechanisms capable of deflecting the power of a full organ playing music that simply soars heavenward.  It is not sweet and gentle or somber and sad.  It is energizing and thrilling and victorious.  I simply melted.  Each time she stopped and asked if that was all right, I could only nod, yes.  I could not talk.  I am in real trouble as far as trying to keep my composure on Thursday is concerned.

Later in the afternoon, I was by myself with some time to fill between the cemetery trip and the haircut.  I stopped at Lowe’s to look for some much needed deck chairs and a hose caddy.  I wandered into Barnes and Noble just to spend time before going for the haircut.  I got scared, especially when I walked around Barnes and Noble.  Everything that has given me purpose for my lifetime up to now has ended.  I have completed a career, I am done living with and caring for Mary Ann.  She is even what I have written about, her care the content of the blog.  I got scared about what I will do when the funeral and memorial up north are over, the house is in order and the thank you cards written.  Will I be wandering about aimlessly, a pathetic old man with no where to go and nothing to do.  It just scared me for a moment.

With that said, I will be fine.  Very many other people who lose a spouse after retiring have exactly the same problem.  “What do I do now?”  Gratefully, there will be time to think about that later.  Right now, there is a lot that will be going on in the next couple of weeks.

When I returned home after the haircut, Son Micah had orchestrated the removal of some of the bigger items in the house because of the Parkinson’s. I had shared with him earlier my need to rid the place of all the signs that it was ever present.  They took up the protective mesh from the ceramic tile floor in the bathroom.  We put it down after Mary Ann did some real damage in a fall.  They took up the matting for the same purpose in the garage.  The rolling shower chair, the wheel chair in the car, the support handles around the toilet stools were all removed to the garage for the moment.

Yes, part of it is that I need time to forget the horrible sight of Mary Ann suffering so much at the end.  I need not to remain immersed in remembering and focusing on the caregiving tasks of the last decade.  I need to remember Mary Ann, the person, “a force to be reckoned with” someone said, and a wonderful, exciting life’s partner.  Yes, we have been shaped by responding to the challenge; we have grown.  At the same time, we are far more than the disease.  I want to remember the “more.”

Now that she is gone, I have nothing to write about.  While I try to decide whether to just stop writing, I will describe and reflect on what is going on during these first  transitional days.  I will write a post or two on the beginnings and development of our life together.  There is a huge hole filled with pain right now.  I need to remember, reconstruct the memory of that life, lift the fog of the Parkinson’s so that the wonder of it will reappear.  I expect what I write to be boring and self-serving, but that is just the way it is.  I started writing these posts each night to find the perspective I needed to survive, to make some sense out of something that makes no sense.  I hoped they would help anyone in similar circumstances who happened upon the blog.  I have been blown away by how many have become a part of our journey in the past couple of years and especially the past few weeks.

As little as I could predict about what we would encounter day by day as we fought the Parkinson’s and the Dementia, I know even less now about what will come next.  Mary Ann is experiencing a spectacular new beginning beyond our knowing.  I am also experiencing a new beginning.  As cliche as it is to say it, today actually is the first day in the rest of my life. So far I am not liking it very well, but given time, that will change.

Plans are now final.  The Mary Ann’s funeral will be at 11:30am on Thursday at the church with a visitation at the funeral home tomorrow evening from 6pm to 8pm.  She will lie in state there from 2pm on tomorrow.  We will have private family time with her at noon. She will lie in state at church an hour before the funeral.  There will be a meal afterward at church to which we hope as many as can attend will come.  On Friday we will have a very short inurnment service with mostly family at the graveside.

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.

As we rolled back to the car after the concert this afternoon, Mary Ann asked why the trio I was singing in had not been asked to come up to the front to sing.  We did sing, but somehow it did not register in her mind.  Caregiver Debbie said that she had pointed out when I went up front to sing and that Mary Ann had responded that she saw me. The Parkinson’s Disease Dementia is such an odd sort of disease.  Perception is sort of like Swiss Cheese, there are random holes with no explanation as to why they are where they are.

The concert seemed to go well.  It was tough logistically to pull off since there was a huge choir made up of folks from five congregations.  There were numbers of instrumentalists playing at different times depending on the style of music.  There was classical music and contemporary music, liturgical dance, poetry, drama; there were soloists, ensembles, a hand bell choir, pieces with organ accompaniment and piano accompaniment and combinations of any or all of the above.  It would have been tough to sit through that concert without finding something to like. It struck me what a complex organism the event was with each of us having our little piece that when put together with all the others could provide something of such magnitude.  There were no stars, no one to single out, other than Young, the project director who had the vision and put it all together.

I enjoyed being in the setting, talking and thinking and listening to and making music.  One of the choir directors from another congregation sang in the trio.  He and I had a chance to talk music off and on.  It is a world in which I have spent much quality time in earlier decades.  I find it engrossing and energizing, as well as spiritually uplifting.

Yesterday I had a chance to talk with our eleven year old Granddaughter whose choir concert was also this afternoon, resulting in my missing it.  She seemed okay with my missing her concert.  She told me about some of the songs they would be singing.  Our Son said he would try to get some of the concert on video for us.  I feel better having made that connection.

Mary Ann and I both slept well last night.  I had plenty of time to get her ready this morning, dressed, fed two meals, hair washed.  There was lots of fainting again, raising some concern about how things would go if she tried attending the concert.  When Home Instead Caregiver Debbie came, we just headed over to church.  Mary Ann seemed to do fine.  The concert was almost two hours long, plus a reception afterward. Lots of people made a point of greeting Mary Ann.  Now that there is an awareness that she is enrolled in a Hospice Program, folks are probably less sure what to expect and more surprised to see her appearing to be doing reasonably well.

Last evening and this evening, after Mary Ann went to bed, I was able to spend almost an hour on the deck, enjoying the sound of the waterfall, watching clouds and birds, as dusk arrived and the lights in the waterfall shone at the base of each level, sparkling in the sheets of water coming over the rocks. As a result it is now getting late.  I will hope for another good night’s sleep tonight, but, of course, whether or not that happens is not mine to decide.

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.

This morning when getting up, Mary Ann looked at the cup with a red cozy around it for keeping the ice water cold for as long as possible and thought it was red Jello.  After I described what it actually was, she reminded me about the red Jello that we needed to call the lady about — the lady who brought it.  We needed to find out what to do to thicken it since something had gone wrong when the lady made it and it was runny.  There is, of course, no red Jello, no lady. (Monday’s meal was delivered by a Volunteer and it included a ring of fruit filled Jello including some that was red — it was not runny but solid.)

There was another complex delusion that she talked about in a very matter of fact voice a little later in the morning.  I can’t remember the content, just that it was surprisingly complicated and detailed, with no relationship to any bit or piece of the visible reality in which we live.

It was probably a good thing that there was a Volunteer scheduled while I have the periodic lunch with jimmy, a retired casket salesman who is enjoyable to talk with.  It was a good thing for Mary Ann since Volunteer Jacki brought her violin and serenaded Mary Ann while she was eating her lunch.

I finally got to the grocery after lunch today.  It would have been tough to go another day without more of a couple of things (most importantly, Mary Ann’s disposables).

Mary Ann had been asking to get to the dentist’s office for a cleaning since we missed the last appointment.  This afternoon was her appointment.  As always, the cleaning produces lots of bleeding. There are two reasons for that.  One is that she is taking Plavix and Aspirin, thinning her blood. The other is that I don’t do enough to care for her teeth since she has lost the ability to brush on her own.  The Aides do a little to help that problem, but it would be good if I would stop feeling guilty about not doing mouth care for Mary Ann and just do it.  I have put a Chux pad on her pillow tonight so that any bleeding will not get on the sheet or pillow.

This evening Volunteer Edie came to stay with Mary Ann while I went to another choir practice in preparation for Sunday’s Concert.  I enjoy singing, I made the commitment and will keep it, but I am very ambivalent about it for a number of reasons.  The central reason is that I will miss Granddaughter Chloe’s choir concert in Kansas City.  She is 11 years old and sings in a children’s choir sponsored by the University of Missouri, Kansas City [UMKC].  This is one of two concerts in the year.  Last year our Kids included a combination Mother’s Day/Birthday celebration by taking us and the other Grandparents out for a nice meal/dessert afterward.  We are missing out on all of that because I didn’t put the date on our calendar, and I committed to sing in the concert here before I received an email reminding us of the date. I hate disappointing Chloe as well as our Son Micah and Daughter-in-Law, Becky.

Another reason for my ambivalence is that the more I enjoy the singing in the concert, the more I remember what I am missing in my life at the moment.  Singing takes my mind off everything else.  I am completely immersed in getting the notes and rhythms right, being exactly on pitch, interpreting the phrases appropriately, blending with the other singers.  There is no room for awareness of anything else when that is going on.

When someone you love has to be away for a long time, while you long to have a visit from them, a short visit from them also brings with it the pain of knowing you will have to say good-bye again in a day or two, going through the grieving all over again when they leave.  It is almost easier just not to see them until they can come home and stay.  That is the something of how it feels when I do something that brings me joy and satisfaction, something that has no place in my life at the moment.

With enough effort, I could probably figure out the logistics of singing in some choir or vocal ensemble more regularly. There’s the rub — effort.  Serving as the 24/7 Primary Caregiver for someone who truly needs your help day and night, does not leave the stamina necessary to work out those logistics.  The will and the energy to do what needs to be done to get away at scheduled times is simply no longer there.  The role I have here is big enough to take all that I have to give.  Even at that, Mary Ann could/should receive better care (e.g. oral hygiene).

Sunday will include a mass of conflicting feelings.  While I want her to get out and enjoy the music, there will be complex transportation and timing issues if Mary Ann decides she would rather attend the concert than stay at the house with the person assigned from the Agency (a person Mary Ann knows and likes); there will be the $80-$90 it will cost to cover that care so that I can sing in the concert; there will be disappointment at missing Granddaughter Chloe’s concert and how she and her parents will feel about it; there will be frustration that I am not reading music or singing as well as in the past; there will be exhilaration in doing the singing, joy in hearing and participating in making the music that will reverberate in that building (Lutherans can really sing).  There will be the Spiritual uplift that comes with the organ music and instrumentalists and the singers in the choir, a roomful of people of faith in the congregation expressing that faith in full voice.

Right now it is getting late and all that is too much to think about.  For the moment, I just hope Mary Ann sleeps well tonight, and me too.

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.

I had little doubt we were on our way back to confusion last night.  The numerous commode trips returned along with a couple of times just sitting up on the side of the bed.  This morning she accused me of lying to her when I disagreed that when the kids were visiting they had been playing with a ball with fire in it. I let that one go without trying too hard to argue against what she was convinced she had seen.

A television report on the news last night must have found a spot in her mind.  The Phelps family blight on Topeka was in the news since an estranged son was in town on a book promotion talking about his difficult childhood before getting away and moving out of town.  Mary Ann asked about one of the Phelps’s talking with me in another room.  She said she had to arouse me from being sort of hypnotized.

She was not in the intense mode that sometimes comes.  I suspect that may be coming next in the cycle.  She was fairly calm, but still getting up often, unsure why or where she wanted to go or what she wanted to do.

Meals were somewhat confusing.  The spatial problems made her insistence on feeding herself pretty tough for me to deal with.  Food was ending up in lots of places, the spoon digging in spots where there was no food to be found. I was not very patient with her today.  She finally did allow me to help her eat the last of her lunch.

Mary Ann was not ready to head out in the car, nor was she interested in taking a nap.  Sometimes she sat with her head down, sometimes not.  The television needed to be on.  Everything that was showing, at least that she would tolerate, seemed to sort of suck the life out of me.  I could hardly stand to be in the room.  I did a lot of pacing.

I have to admit that it was not a good day for me either.  I had a bit of the feeling of a trapped animal, no alternative within reach with enough draw to grab my attention.  I read emails a bit, did some posting to Quicken.  Reading a book simply does not work for me when there are multiple times attention must return to my primary responsibility.  Some people are good at switching into a deep focus quickly when doing tasks. It is not easy for me to do so. If I do get engrossed in something too deeply, I am afraid I will not be there when needed.

At about 5:30pm, just minutes after she had decided to put shoes on so that we could do my errands, Mary Ann decided that she needed a nap.  The good news was that I was able to spend time on the deck reading some devotional material and just experiencing the moment and the environment. I had the video monitor nearby so that I could check on Mary Ann regularly without having to go in the house every few minutes. The bad news is that she did not get supper and the late nap may result in more awake time during the night.  A short time ago I got her up to change into her pajamas, gave her the bed time meds and a container of applesauce. At the moment, she seems to be sleeping.

I am going to try to find the right music and devotional material now to see if I can continue the restoration of peace begun on the deck.  Some days are just harder than others.

This Face book business adds a whole new dimension to life.  I don’t think I have ever been wished a happy birthday by so many.

The morning began bright and early with cards from the Spiritual Formation Group members and a cherry and apple kuchen.  Before the group meeting was over, my Sister Gayle called and sang happy birthday to me.  There were more cards in the mail, in addition to a few yesterday.  We had no special plans, except, of course, some ice cream from Baskin and Robbins late this afternoon — but then every day is an ice cream day.

The last three days have been pretty active ones.  On Monday, after Bath Aide Zandra came, Mary Ann’s friend Jeanne came, brought lunch and then spent the afternoon.  Mary Ann had some time out outside in the beautiful weather.  During that time, I ran errands, including a trip to see Dr. Tim about manipulating my back to help with the consequences of Saturday night’s challenges with Mary Ann’s fainting.  Volunteer Patrice came to spend the evening with Mary Ann. I combined a few errands with some time sitting in what had been a favorite spot for quiet time.  The area has changed and it seemed to have become everyone’s favorite place to drive through.

On Tuesday, Mary Ann did well in Bible Study.  We picked up pizza slices for Mary Ann to eat for lunch, then went to see Doug and Marikay for haircuts.   It had been so long that he needed to use hedge trimmers to cut my hair!  We always enjoy the conversation with those two.  We share a love of the outdoors and wildlife.   Following the haircuts we went right to the grocery store.  I marvel at how much we buy just to feed the two of us.

Volunteer Shari came for the evening.  After a couple of little errands, I spent time again parked in the beautiful spot nearby.  For some reason there was very little traffic that evening.  It was a beautiful night and a wonderful experience.  A CD of choral music titled “Shakespeare in Song” by the Phoenix Bach Choir provided stimulating and exciting choral music, lifting my spirit.

This morning toward the end of our group time, Bath Aide Zandra came.  Mary Ann was still in bed and asleep when Zandra arrived.  Later in the morning, Hospice Nurse Emily came for her weekly visit.  Then Volunteer Cynthia came for two and a half hours, followed by Volunteer Rebecca who stayed another two and a half hours.

During Cynthia’s time with Mary Ann, she did the ironing!!! God is good!  So is Cynthia!  Also during that time Sheila, who does landscaping for folks in the area came by to do her every two week clean up.  She did some clean up on the waterfall to tide us over until Brad comes by for the official spring refreshing of the plantings.

During Rebecca’s time with Mary Ann, I got a major errand run, all the useful remnants of the clean up taken to Good Will.  Then came supper, followed by ice cream, followed by Mary Ann going to bed.   Doug and Marikay stopped by to deliver some salmon they had smoked for us and to see the new sun room.

Both of our Kids, Lisa and Micah made their Happy Birthday calls.  All in all, it has been a pretty good three days for both of us.  Last night when I sat down to write a post, I fell asleep at the computer.  I decided I needed to get to bed.

Now that I mention it, my head has been bobbing as I have been sitting here writing this. Thanks to all who sent cards or Face Book greetings.  It made the day a very special one.

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.

Don’t worry, this post is barely rated PG.  A prior post was rated PG-45.  That was to make clear to our children that it might contain too much information about their parents love life.  Since I am a Pastor, we, of course, had our children by virgin birth.

Before talking about how touch has impacted Mary Ann and me in recent history, today was in some ways a continuation of yesterday.  Her blood pressure was 180/100 first thing this morning.  There is no way I would consider giving her medicine to raise her blood pressure given that reading.  Even with BP that high, there was a little fainting in the morning.

Volunteer Edie spent the morning with Mary Ann.  There were no problems with fainting.  After lunch the challenging intestinal activity resumed for a while, except for the fainting.  That task is more manageable when there is no fainting.  I am longing for the resumption of more normal regularity, demanding less assistance.

One of the unexpected benefits of Mary Ann’s illness is that it demands more touching.  I grew up in a non-touching family.   I was well into my thirties before I greeted Mom with a hug when visiting.  Before that it was hi to Mom and a handshake for Dad.  Gratefully, through a variety of circumstances that changed, especially with our children.

When a marriage has caregiving added to the relationship of husband and wife, there is an intimacy that grows of necessity.  I am holding Mary Ann many times a day.  My arms are around her to move her, lift her, shift her, dress her.  Prior to the addition of the caregiving, we were not very demonstrative and openly affectionate.  Now, I often linger with a hug when doing one of the tasks that requires putting my arms around her.

I have little doubt that there is an intimacy in our relationship now that we might never have experienced without the needs brought by the Parkinson’s and the complications that have come along with it.  Of course, neither of us would have chosen this way to add intimacy to our relationship.  It is sort of like finding a pearl in a pile of poop. (Am I not poetic!)

Last night and this morning were helpful times for me Spiritually.  With the complexities of Mary Ann’s personal needs, her napping, the vagaries of the blood pressure and dementia, we have not gotten to church very often.  Private devotional time does not substitute for corporate worship which provides community and an encounter with the core message coming from every direction.  Time alone with tools that help focus one’s heart and mind on the presence of God is an important mechanism for Spiritual growth.

Last night, the computer provided access to music that became a means through which the message of God’s unconditional love washed over me.  There was some Taizé music.  The there was a group named Anuna (sang in Riverdance).  Much of their music is ancient church liturgical music.  I played again the CD that includes “The Deer’s Cry,” which is an arrangement of the St. Patrick’s Breastplate prayer with which he began each day.  During the time I was listenting to the CD, I turned the lights in the house off, except for a votive candle on the mantle in front of a small iron Celtic Cross, casting a shadow on the wall.  Those are helpful times that allow my spirit to settle.  It was a help after the difficult day yesterday.

This morning at the lake, I listened to more of Anuna and some more Taizé music.  There was a passage from Jeremiah (29:11-14) and a couple of Psalms (100 and 101) that provided some grounding for the morning’s music and nature watching.  There were only a few birds, but the sounds of frogs and little critters of one sort or another filled the air as I walked along a marsh area (reminiscent of my childhood days playing at the swamp).

This afternoon, I had a little time during one of Mary Ann’s naps to sit out on the deck for the first time since the remodeling began a few weeks ago.  The signs of spring are slowly coming into view.  We do not have a secluded cabin in the woods, but as the leaves come out and the greenery flourishes, the little space at the back of our home will provide some of the nurturing environment I need to stay whole in a very fragmented and disjointed world in which I have very little say about what goes on.

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.

“The Doctor who treats himself has a fool for a patient.” Not only do some who read my posts show love and concern and words of compassion and support, some of you are also worried about how I am doing.  You may very well suspect that I am trying to treat myself spiritually and mentally, against which the above aphorism warns.

You may not change your mind after I have described what leads me to feel secure and healthy in the midst of dealing with so much over which I have no control.  I hope you catch sight of some of what keeps me grounded spiritually and mentally.  I will also share with you some things to watch for that might be symptomatic of losing my bearings.  What I will share is not just about me but anyone who is in a role like mine, or struggling in any way with things over which they have no control.

Last nights post was a window into the specifics of one of our challenges.  I have chosen to write in great detail what we are going through and my feelings about it.  I do so for a number of reasons.  One is that I think it is more interesting, and brings to life what we are experiencing in a way that is accessible to someone who doesn’t have direct experience with whatever it is.

I write in such detail the struggles we are going through and my feelings about them so that readers who are in this kind of role will be reassured that they are not alone in their frustrations.  Somehow it is a little easier to endure seemingly impossible situations when it is clear that there are others doing so.

I write in such detail, including feelings of helplessness as options seem to narrow and the boundary of the ability to cope comes into view. so that those who happen not have been there can catch sight of that place.  That goal is to encourage all of us to look each other with a level of compassion, realizing that the people we know, many of them, may be in the throes of some sort of personal battle, suffering in silence.

I am not silent.  One of the purposes of sharing all the gory details of our journey is that it helps me not to be silent.  I have been using all of you who read these purposes as a collective therapist.  You listen.  No one can go through another’s pain and experience it for them.  Each of us has to survive our own pain.  Many of us like doing so in a community.  You are my community.  The Volunteers are my community.  Friends and family are my community.  I am also part of your community.  One of the greatest joys in the ministry has been listening to and talking with others, maybe some of you, when you have been dealing with things over which you had no control.  I can only hope that the time we spent together helped.

When I write, I seek to be straight with you.  I have chosen, wisely or unwisely, to forgo any pretense that because I am a Pastor I am always pure and holy and strong and capable and wise and completely in control mentally and spiritually.  The tradition of which I am a part is about the Grace of God.  That means I believe that I am loved and forgiven just the way I come, ugliness and all.  I am not saddled with the hopeless task of becoming so wonderful and loving that I measure up to God’s expectations.  I need to be able to fail God and know that God will not fail me — even though it would be only fair for God to do so.  I don’t want a God that treats me with fairness.  I want a God who treats me with mercy.

Here is my assessment of how I am doing.  I think I am doing well.  I feel whole and full of life.  I hide very little from you as I write.  By doing so, it helps me see the reality of what we are going through here. It feels healthy to me to be able now to cry, to grieve, to express frustration, as well as describe the natural beauty that nurtures my spirit. I am free to feel the pain deeply because while it is very real, it does not have within it the power to destroy me.

Here is where the faith tradition of which I am a part frames my world view in specific terms.  I affirm that the One whose actions consummated the deal that has resulted in the Grace of God sustaining me and any who happen to recognize a need for it, has shown me how to live.  He loved people deeply, he knew how to party, he had compassion, he cried, he got angry, he got frustrated with others, he went off by himself to pray, he went to church, he felt pain, he felt overwhelmed, he cried out in desperation from the means of his execution, he faced death without pretense, went into it, through it all, and came out on the other side with life past any power to destroy it.

I feel utterly and completely secure in the love that surrounds me from the One who creates life in me every day, who has put his life on the line for me, whose Spirit nurtures my spirit.

In human terms, I have children and their spouses who listen to and support Mary Ann and me.  They will do anything in their power to be there for us.  I have Brothers and Sisters who care about us.  Every Wednesday morning four of us spend a couple of hours with Scripture and the reflections of others who have gone before us in the faith.  We talk about God’s participation in our lives moment by moment, day by day.  While not often enough, the interactions with friend John from Oklahoma have been exceedingly nurturing Spiritually.  At the moment he is leading a group on a mission trip to Guatemala.  Please keep him and his group in your prayers.  The times I spend in reading and meditation and solitude (deck time, listening to music, appreciating the beauty of nature) are pivotal in maintaining Spiritual and mental equilibrium.  The retreats to St. Francis of the Woods in Oklahoma are powerfully healing.

The online community of those caring for spouses with a form of Lewy Body Dementia has provided a place where complete understanding can be found.  There are many things that I would not say here in these posts that can be said openly in that group with utter and unconditional acceptance.  That group demystifies things that could have more power than they deserve. Reading those posts daily helps put our struggles in perspective.

Words are an important way for me to process what we are experiencing.  Using them in writing and in interaction with anyone unfortunate enough to ask how we are doing, provides a wonderful release.

Here is when to worry: when I stop writing and talking.  It will be time to worry when I no longer shower and wash my hair in the morning, get Mary Ann dressed and fed, make the beds and clean the commode, clean the kitchen counters, drink PT’s coffee and eat Baskin & Robbins ice cream (actually I should stop that last one, it would be healthier), feed the birds.  If I start telling everyone how perfectly I am doing, never sad or frustrated or out of control or grumpy or angry, always sweet and nice and wonderful, then it will be time to call 911 and have me institutionalized.

All of that being said, “The Doctor who treats himself has a fool for a patient.” I appreciate people asking the hard questions of me since I could be deluding myself into thinking I am doing better than I am.  When the Hospice Social Worker came, she asked very many pointed questions of both Mary Ann and me.  I felt I was being absolutely honest with her when I answered each question.  I recognize that there are still more difficult times coming.  I feel healthy spiritually and mentally now, and I expect to deal with what comes as it comes in ways that express fully what I am going through. I am on the pay as you go plan.  When I hurt, I will hurt and when I am wounded, I will feel the pain.  With that Grace of God as the power, healing will come.

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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.

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.

Sitting in the transfer chair in front of the television, she just fainted.  I took her blood pressure as soon as I could get the cuff on her arm, the stethoscope in my ears and the cuff inflated.  It measured 80/50.  About five minutes later I took it again.  Then it measured 90/60.  Remember the three weeks it measured 220/120 when I took it first thing in the morning?  Check a few posts back.

I started her on a half of a Midodrine pill three times a day.  I got in two doses today.  And so the roller coaster goes up and it goes down.  Today is the best day in the last four (if I am counting correctly) in terms of Mary Ann being awake and lucid.

She got up in time to eat and take pills before Bath Aide Zandra came this morning. While I needed to help her with all that she ate, she had a good quantity of food. She did faint more than once for Zandra as she was trying to give her a shower.

She sat up in the chair for the rest of the morning.  It was the longest she has sat up in the chair in many days.  There has been no evidence of hallucinations today.  She ate reasonably well at lunch, having a big bowl of ice cream for dessert.

After lunch she sat for a while and began slumping over some.  Soon she got up to go in and take a nap.  She slept until supper.  She ate reasonably well (I actually cooked) and had a lemon bar for dessert.

Since Volunteer Twila came for the evening, I was able to get out for a while and bring back for her a couple of scoops of Baskin & Robbins.  She ate that treat right away.  It was not long after that that Twila left and she went to bed.  She has been down for a couple of hours, either watching television or sleeping.

I have finished the fax to the KU Med Center Parkinson’s Clinic Neurologist and intend to send it tomorrow.  As I finished it, I could describe what has become a pattern for the last three weeks: two days and two or three nights with streaming hallucinations any time she is awake;  then two days and two or three nights of sleeping all the time (day and night); then a couple of days and nights in which she sleeps at night and is awake and lucid about half of each of the days.  Then the cycle begins again.  This is the closest we have come to a pattern in a long time.  It is not a wonderful and pleasing pattern, but at least it provides something coherent to communicate to the doctor other than constantly unpredictable changes.

Last night instead of getting to bed early as I had planned, I checked out some of the Taizé music on YouTube.  I followed it with some Russian Orhodox Liturgical Chant, also on YouTube.  That hour or so was very nurturing spiritually.  Since the snow and Mary Ann’s sleeping through the entire day precluded getting to corporate worship, I needed the sabbath rest more than the physical rest.  Tonight for part of the time I found a spot with enough light at PT’s coffee shop and read the book on science and religion called The Mind of God by Paul Davies.  I mentioned it in a prior post on this blog.  The author does not believe in God as do I, but his approach certainly makes it clear that he does not rule out that possibility.  He seems to be arguing for belief, based on the science, even though he does not claim belief.  My faith is nurtured rather than challenged by what I read.

As I have repeated far too many times, this is a particularly difficult time in our journey.  The Spiritual nurture is a key element in sustaining me during this time.  I am grateful for Mary Ann’s strong faith as we journey 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.

This will take a long time to write.  I am heading to the bedroom every five or ten minutes to help talk Mary Ann back into bed after getting up to respond to another dream/hallucination.  It is taking a long time, longer each trip into the bedroom,  to talk her down from whatever it is.

Mary Ann insisted on getting her pj’s on and going to bed at 4:45pm today.  She got up fairly early this morning.  Last night included a few more times up.  At least it wasn’t until after 6am that she starting trying to get up for the day.  Right away this morning she had that very intense lucidity that is laced with a little hyperactivity.  That particular version of lucidity lies just at the entrance to the place where the hallucinations run wild.

I managed to convince her to stay at the bed long enough for me to get myself showered and dressed.  Then we moved quickly through getting her dressed, hair washed, pills taken and breakfast eaten.  Things slowed a bit as she enjoyed a leftover orange/pecan sticky bun.  Almost the first thing Mary Ann remembered this morning was that there should be one left if I didn’t eat it.

Edie came to stay with Mary Ann while I headed up to the lake for some time away.  By the time Edie arrived, Mary Ann had finished eating and had her head down on the table.  At one point while in that position Mary Ann said something about the people stealing money.  I explained to Edie her recurring fear that “the people” are taking money from the loose change jar.  It is still out of sight next to my bed after the time she asked me to hide it so they couldn’t get it.

When I got back from the lake, Mary Ann was resting (in and out of sleep) on her bed.  Edie always brings and then cooks a lavish meal when she comes to stay with Mary Ann one Sunday morning a month.  The food was hot and ready to eat, but Mary Ann was not ready to get up and eat it.  I went ahead and ate.  Shortly after I was done, Mary Ann was ready to get up and eat.

After eating, she soon ended up in front of the television with her head down.  She was awake some of the time.  Later, I asked her if she wanted supper before or after the Evening Service at church.  She did not respond to that, but it was then that she decided to get ready and go to bed.

Last night was not wonderful for sleep.  Tonight has been filled with activity so far.  It is extremely likely that the hallunations today will be compounded tomorrow due to the lack of sleep.  That means that I also will be wanting for sleep.  Maybe this is the week I will end up with a paid person here so that I can get a good night’s sleep.

Given all the ups and down and twists and turns in the last weeds of this ride we are on I was grateful to have a couple of hours away from the house during the daytime hours. The need for Sabbath time is not exclusively for people of the Judeo-Christian tradition.  Whatever word is used for it, the fact that we have come into existence  with the need for sleep suggests that there is need for rest whether rooted in God’s creation of us with that need and calling it sabbath, or a need that emerged over aeons of evolutionary change (or both).

I think everyone needs some sort of intentional time for re-grouping, renewal time, time to think and process events, time alone, time to stop the stream of thoughts filling our head, and allow time to be quiet, time for intuitive connections to be made, the ones outside our power to force solutions to problems.  I certainly need such times.

Again today, the timing of Mary Ann’s needs frustrated plans to attend Corporate worship (worship with a community of people).  This morning at the lake I had some sabbath time, not corporate, but nonetheless sabbath time.

Of course the natural environment there speaks loudly to me of a connection with a Creator who has chosen to love me unconditionally.  The Eagles were fewer in number but still entertaining.  One caught and ate his lunch within binocular distance of me.  There were ducks and geese and gulls.  Blizzard conditions gathered power for a time as I sat in my warm van.

I read from Weavings, the Spritiuality Journal to which I subcribe.  I pulled out the Ingantian Retreat book that I ordered and spent time reading the next week’s suggested activities.  As usual, there were suggested Scripture references.  I read some of them and found them very meaningful.

I put on a CD of Medieval Music.  Anyone who studies music history discovers quickly that most early music is church music, or has its roots there.  The CD of Medieval Music is included words and themes that supported my sabbath tradition.

Since Mary Ann went to bed so early, I had time to put on the last Celtic Woman DVD from PBS.  Because of my experience a couple of weeks ago with a CD by one of the members of that franchise, I have realized how many of the songs sung by that group have lyrics and themes that emerge from my Spiritual tradition.  It makes sense, since the religious tradition of the Irish, at least after the early Celtic Paganism practiced by the Druids, is a just a different branch of the same tradition.

Putting the bits and pieces together provided some sabbath time today that has helped.  While corporate worship is an important part of any healthy sabbath experience, the bits and pieces helped keep my feet securely planted in the unconditional love that provides the support I need to deal with all that daily living brings.

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.