Hospice


As the Parkinson’s took away Mary Ann’s ability to do so many things, she needed my help and that of the Volunteers to do fulfill the basic human needs.  The doors had to be widened for walker and wheelchair (thanks to the KC Crew of friends).  The carpet was replaced with something firm enough to allow the walker and the wheelchair to roll.  We got adjustable beds to help with movement.  The bathroom was remodeled to provide a roll-in shower.  Grab bars were added to the bathrooms, tall toilet stools installed.  There was a shower chair and then a bedside commode as time went by.  A portable ramp was purchased for use when needed.  A rolling Hoyer Lift was purchased for times I might not be able to get her up off the floor. 

We purchased special dinner plates for those with limited dexterity, then had ceramic ones made by a local potter.  We were given a set of large handled silverware, easier to grab hold of.  Bath Aide Zandra was engaged to come and give her showers twice a week.  Debbie from Home Instead came early Sunday morning for the last few years I was still working. 

Volunteers by the dozens (she called them her Angels) came many hours a week to help her with her personal needs, as well as keep her company.  I helped her turn in bed and go to the bathroom or use the bedside commode multiple time a night for many years.  I or the Volunteers helped her get dressed, move around the house.  I fed her sometimes at first and later all the time.  One way or another, I obtained or prepared food for her, sometimes Volunteers provided it. 

Mary Ann needed my help and the help of the Volunteers.  She was never needy.  To put it bluntly, she needed my help, but never needed me.  That sounds like it could be a bad thing.  It was not.  She loved me;  she chose to marry me, I cannot be anything but honored by that.  She did not need me.  She was always a complete person without needing anyone else to complete her.  Given the pain I have felt at her loss, I suspect I was the more needy one.  When I think about it, sometimes when I caught sight of the fact that she didn’t need me, I wondered if she actually loved me as much as I loved her.  It was not that she didn’t love me completely, it was that although she loved me, she didn’t need me. 

Realizing that was sometimes a little scary.  How could I count on someone who didn’t need me to actually love me?  I would be so much more secure if I had some leverage.  If I had something of value that she needed so that she would have to love me, then I could be sure never to lose her.   That thinking is almost like feeling as if I needed to hold her hostage, to have some control on her to make sure she stayed.  How could someone just love me, choose me?  I grew up with the same lack of self-confidence that often comes especially with adolescence. 

I did not actually live in fear that she would leave.  We had chosen one another and made a public declaration that we had done so.  We promised faithfulness to one another.  We kept our promise.  It is nothing out of the ordinary.  At the Hospice Grief Support Group meetings, around the table are folks, some of whom were married for sixty or more years.  The Kansas City crew of friends have all been married way over forty years.  Many of the people to whom I have served over the forty years of ministry have been married for multiple decades.  One couple made over 75 years of marriage.  Since Mary Ann died after we were married for 44.5 years, I have been married the shortest time in our family of five siblings.  Our parents were married 59 years before Dad died. 

She wasn’t needy.  She didn’t need me to make her whole.  She loved me, chose me and committed her life to me as I did mine to her.  Yes, she came to need my help, but she was never needy.  It was an honor that she chose me and loved me.  It was an honor that she allowed me to help her.  I could not have asked for a more privileged life with her.  I am so sorry that she had to suffer so many indignities and infirmities.  That is the source of my pain and sadness.   She never lost her strength of character — and she was a character!

It has been exactly four months to the day today.  That dawned on me when I signed in at the Support Group this afternoon and saw that the person who signed in before me had written today’s date.  I no longer have the privilege of caring for her, but my loss is her gain.  She is whole again, no longer in need of my help.  She is completely immersed in the unconditional love of the One who gave, who gives her life – now free to live that life without the limits of the Parkinson’s.

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“If not for me, the world would have missed….”   The Hospice Chaplain began his message with that question during the Memorial Service last Thursday evening led by Midland Hospice, the organization that sponsors the Grief Support Groups I attend.   

It is not unusual for people to be so self-deprecating that they find it hard to presume to suggest they have made a difference in the world.  It seems arrogant to talk as if we are God’s gift to the world.  If we happen to be in the mode of feeling sorry for ourselves, we will claim we have done nothing anyone will miss.  If we have had a critical parent or spouse or close friend, we may have concluded that just as they have said about us, we do not measure up. 

Sometimes it is actually our inflated ego that sabotages our ability to finish that sentence with anything of substance.  What I mean by that is we sometimes demand that for something to qualify as an achievement that would be missed, it has to be something so much better than what the ordinary folks can do that we received accolades for it. 

What ordinary things have you done?  They are likely to be the things that the world would have missed most.  That you have survived what you have been through is a remarkable accomplishment — no matter how it compares to anyone else’s accomplishments.

The Chaplain was very insightful when he followed that question with some clarification.  He pointed out rightly that most of us struggle with memories of things we did not do well, times we were impatient, harsh, unsympathetic, times we did not do what we should have done, had we been better caregivers.  He urged us to set those thoughts aside for the moment, and focus on what we did do for our Loved Ones.

I have admitted here more than once that the most painful memories are memories of just how debilitated Mary Ann was getting and how little I allowed that to enter my awareness.  I was not always as sympathic and understanding of her limitations as I should have been.  This morning, a simple question some neighbors asked when we crossed paths at the Farmer’s Market planted a seed that sprouted twenty or thirty minutes later.  The question was about cooking, did I do the cooking for Mary Ann.  I admitted my limitations in that area, but answered yes.   Later, as I was leaving, my mind wandered back to that conversation.  A silly claim that I had made came to mind, that I made the best peanut butter and jelly toast around.  I remembered toasting the bread to exactly the color that she liked, cutting it into four squares and feeding it to Mary Ann, making sure each bite had some jelly and peanut butter in it.  I often added two slices of crisp bacon, each cut in half so that every quarter of the toast had a half slice of bacon on it.  I had a certain order of squares so that she would not have too much dry toast in any one bite.  I anticipated when she would need a drink.  Thinking about that brought back the painful feelings to a level I had not felt in the last three weeks or so.  It was not that impossibly intense level that that could hit like a brick during the first weeks, but it was painful. 

I remembered how good it felt to be able to feed her in a way that brought her some pleasant moments.  I longed to be able to do that again.   As that pain settled in (it stayed for a while), I realized that feeding her that peanut butter and jelly toast with bacon was something that she might have missed, had I not been caring for her.  Obviously, I can’t know what would have happened if I had not existed — whether someone else would have done it.  That is not the point.  I did do it.  I made a difference in her world, just as she did in mine. 

There are, of course, some obvious ways of finishing a sentence like that.  I suspect our Children and Grandchildren would have missed mine and/or Mary Ann’s presence in the world.  Those are easy answers.  It is a healthy exercise to think about the impact we have had, the ordinary impact, just being a part of people’s lives.  Simply having answered the Call to Live by continuing through each day.  I have spent time in conversation with many suffering from depression over the years.  When someone is depressed, just trying to finish a sentence like this one is more depressing.  The Chaplain made the point that each of us in that room had survived our grief until that moment.  We had survived the death of someone we loved.  Just to have survived what we have been through, whether the loss of a Loved One or the loss of our confidence and sense of self-worth that comes whith depression — just to have survived is an achievement worth adding where the dots are in that incomplete sentence.   

There are so many things that I did not do for Mary Ann or did not do well.  She deserved better.  At the same time, I did make a difference in her life, as she did in mine.  The greatest gift we gave each other was ourselves.  We stayed in relationship with each other.  In doing so we did make a difference.  Each of us would have missed a lifetime of the other’s presence, had we not been there for one another.  As painful as it is sometimes to remember, it is comforting to remember what each of us brought to the other.  That remains.  We both get to keep those memories.

In a former post I reflected on the power of the word “Hospice.”  When the neurologist suggested it, we pursued that option.  It fit our intentions for how we would travel the last leg of our journey together.  Enrolling in Hospice and then seeing her looking almost comatose one Sunday morning after an increase in the Seroquel (in an attempt to manage the hallucinations) combined to finally break the dam on the tears, a dam that had been holding them back for years.  I sat in the car at the Lake on that cold morning, listening to Celtic Woman Lisa Kelly sing, weeping loudly and long.  

It had finally sunk in.  There was a part of me that somehow thought we would just keep death at bay for years to come.  Mary Ann had bounced back from so many hits, any one of which would have taken a person with less grit and strength of will.  That morning, the denial was breeched.  That denial had allowed us to live a fairly normal existence in very difficult circumstances.  The truth is that Mary Ann never let go of the denial until she chose to stop eating and drinking.  I returned to that denial, comforting myself with the knowledge that some in the Lewy Body Dementia Spouse Caregivers online support group had been in hospice for as many as three years (maybe longer).   My denial didn’t begin to crumble again until the same time as Mary Ann’s.  Of course, I knew intellectually what was afoot, but my gut was not influenced by what I knew in my mind. 

Sending out the word that Mary Ann was now enrolled in Hospice, had the effect of moving friends to come and spend time with her.  Some of our Kansas City Crew of close friends came by and spent the better part of a day.  We have decades of history together, and stories to tell from that history.  As always we had a good time together. 

Friends Trudy and Coleman with whom we shared a similar history, came by and spent hours with us.  Trudy and Mary Ann had developed a special connection over the years.  It was a comforting few hours.  Mary Ann surprised us with her sharpness at one point when she remembered a name that the rest of us could not bring to mind.

Niece Diana and her Daughter Rachel came by from Northern Illinois for a couple of days.  When we were married, Diana was old enough to be a bridesmaid in our wedding.  That visit was especially meaningful to Mary Ann since geography and circumstances had made it hard for her to keep those family connections active.  Mary Ann could no longer write letters; she could not manage the computer to email; her voice was not strong enough nor did the words flow freely enough for her to talk on the phone.  That visit sort of filled an empty place that had developed in her life since travel had become so difficult for us, preventing much family contact.

Then there was the visit of the Three Friends from the North, Joy, Terry and Cherri.  That was the most wonderful gift she could have received before her journey here ended.  I have written often about them and the raucous times when the four of them got together.  It was no different this time.  They have hung out together since they were all in about the Fifth or Sixth Grade.  The old feisty Mary Ann emerged as the stories flew by.  It was a marvel to see. 

All those visits provided a fitting conclusion to Mary Ann’s life here.  There were many Volunteers who enjoyed time with her in the final months.  Those relationships had come to be very meaningful to her.  Then when the end finally came, all of us in her immediate family surrounded her, ministering to her and expressing our love for her.  While none of us would have chosen for her to leave so soon, the last leg of the trip was filled with good and satisfying times.  Her departure was peaceful, and I have no doubt her arrival at her next destination was filled with joy and wonder and happy reunions. 

In spite of the onslaught of the Parkinson’s and the other physical assaults on Mary Ann, in spite of the struggles we both had trying to negotiate all that was thrown our way, there are some gifts that came to us and those around us.  In fact some of those gifts came because of what we went through.  In subsequent posts I will describe some of those gifts.  I described them in the words that I shared at Mary Ann’s Memorial Service in Northern Illinois.  I need to describe them again and celebrate them.

This morning’s walk was dangerous!  I don’t know what I did.  I have gone around those bushes many times, once on my first pass.  This happened on the second pass.  The chirps did no damage, but the little winged attackers came mighty close.  I think they were tree swallows.  Otherwise the walk was again a pleasant way to become energized for the day.  One of my favorite sights is a field of round bales of grass/hay.  The field at Cedarcrest is in the process of being cut, rows of cut grass formed by a tetter, and a baler rolling the grass into the huge round bales, each apparently weighing around 2000 pounds. 

Today was furnace day.  I am now the proud owner of a 95.5% efficient furnace.  They should pay me to use it.  The installation demanded having the AC off all day.  The heat index was probably pushing 110 degrees.   I was happy to have reason to be out of the house a couple of times during the day.

This was the first actual exercise day.  There are parts of my body that I clearly have not used very much, since I was unaware that they existed.  I wonder what I will feel like tomorrow.  I feel very good about walking and working out as grief therapy.  I felt good after completing both today. 

I went to another support group this afternoon.  There must have been fifteen or sixteen people by the time all had arrived.  The Leader had told me that there would be ten or twelve when I called.  I think she was surprised too.  This group had many first timers who had lost a loved one just weeks before, mostly Spouses, two had lost their Mothers. 

There were lots of tears as well as some laughter.  Of course the most beneficial element is the freedom to speak openly and freely to people who understand without explanation the nature of the pain.  Some there had lost a spouse two or more years before.  They had lots to share about what was helpful to them in the healing process.  They were reassuring that survival is possible, that the pain does become much more manageable with time. 

I don’t suppose there was anything I heard that I didn’ t already know intellectually.  In years past I have told people who were grieving those same things.  It was helpful for me to hear them again from the mouths of others, now that my attention has been captured fully.  The people there confirmed the value of some of the choices I have made, writing, exercising, getting to support groups.  They helped me try to get some perspective an uncomfortable experience in the recent past. 

When I returned home, I always check the front door on the outside chance someone has sent something.  There was a box with a soft sided cooler in it, containing fifteen or twenty different packages of Mrs. Field’s snack-sized cookies and brownies.  Wow!!  What a treat!  The note was signed simply, “COME SEE US.”  It is from some wonderful, caring friends from KC who now live in a beautiful spot on a picturesque inlet of a large lake in Oklahoma.  I will do as they ask. 

Tonight some of the tasty food from the freezer (brought by former parishioners and neighbors around the time of Mary Ann’s death (I have to keep saying that until I get used to it) was added to lots of veggies, sweet corn, zucchini, onions, tomatoes, bread from the Farmer’s Market.  Were it not for the quantities that I consume, I would be pretty healthy, slim and trim.  Well, there was the dish of ice cream with some of the snack cookies. 

I just returned from a spontaneous trip to look at the most remarkable show in the evening sky.  I walked outside to look at the legs of a huge rainbow melting into a reddish cloudy center.  Opposite that rainbow, which was resting against a deep, dark grey background, was a bright red and turquoise sky separated horizontally (bright turquoise on the bottom and equally bright red on the top) by a bank of cloud, smooth and dark.  To the right of that was a jumbled puffy strip of dark clouds hanging just above the horizon.  Some of what I am describing I saw while standing in the street in front of my house.  As I stood in the street, there was some bright cloud to cloud lightning followed in a fraction of a second  by an ear-splitting crash of thunder that sent me back to the house.  It seemed far too close for comfort.  Then I realized I was free to hop in the car and go to my favorite spot to look at the sky with an unobstructed view.  Some of what I described above is what I saw from that hilltop.  I debated about even trying to describe what I saw.  If someone were to paint the scene, critics would probably say it was a contrived mix of elements that could not be so at the same time in the same sky.  I am not a skilled enough writer to describe it with the elegance and clarity it deserves, but it was too remarkable not at least to make an attempt.

I think I will stop with one post tonight.  I still hope to make the new blog domain name simple and accessible enough to begin separating out these posts from the continuing story of Mary Ann’s and my marriage.  These posts are intended to describe the beginning of my attempt to build a new life.  The continuing story of our marriage is the therapeutic reclamation of a history of a full and meaningful life with someone I love deeply.  The love has not died.  It is still as strong as ever.  That and the memories, I get to keep.

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 am not sure that I have sat down for more than a few minutes at a time since Mary Ann died.  (It is still so hard to say that.)  I realize that it is a way to hold the pain at bay.  The pain is still fresh and raw, so working constantly takes my mind off it.

We have gotten mountains of things done.  We have made it through all the clothes.  Those are ready for disposition.  We have been through all the drawers in her dresser.  I have no explanation for this, but yesterday we missed two of the drawers.  We thought we were done, but we still had two more to go through today.  The contents were very difficult, especially the jewelry.  There were many cheap digital watches.  We kept getting new ones in hopes that we would find one she would wear and could read.  There were countless scarves.

When Son Micah came this afternoon, he mentioned the pantry.  I was able to shed about 60% of what was in there and give it to the Kids.   I found another stash of crafts downstairs.  Chloe will get that.  Micah will take the hangers (a huge bag).

Then came some rearranging of furniture.  My chest of drawers ended up in the closet, since there are not very many clothes left in there.  The table by her chair with the computer screen that constantly showed pictures of the Grandchildren is now downstairs and the computer moved to a corner in the living room.

The house is not dramatically changed, but enough so that things won’t completely revolve around the empty chair.  I can’t avoid the reality that she is gone.  I need to embrace that reality.  That realization will create wave after wave of feelings triggered by things I have yet to discover as well as some of which I am very much aware.

The medical equipment will remain in the garage for at least another week. Tonight’s threatening rain storm changed the plan of putting it all in the open bed on Micah’s truck.  Hopefully that will leave the garage by next weekend.  That is the current plan.

Daughter Lisa will stay and help some tomorrow, perhaps staying until Tuesday morning.  We have lots of things to take to various places.  The death certificates should be ready by tomorrow afternoon.  They need to be sent to various people to get wheels turning on changing accounts designations.  Plans need to be put into place to try to reduce household expenditures by the amount of her Social Security.  The practical matters keep a focus of attention and energy during these first days.

This morning was the first Sunday worship service I have attended sincer Mary Ann’s departure.  It was the first time that I have sat in the pew at the mid-morning service since I retired two years ago.  I wasn’t sure how it would feel.  It actually went very well, in comparison to how it might have gone.  I felt very much at home and surrounded with people who had become almost family over the last fourteen years.  There were lots of hugs and words of concern and support.  All shared the assurance that Mary Ann is secure in the presence of the Lord.

A number of folks have, of course, served as Volunteers at our home over the years.  They know the ins and outs of what we have been through.  A number of folks have been reading these posts and through them have come to have an intimate knowledge of our journey, especially the last few weeks.  It felt good to talk with so many people and experience how many there are supporting our family.

One development I wish had come before Mary Ann died.  A choice of her estranged Brother had hurt her deeply, separating him and his family from us.  I was able to make a connection on Facebook to fulfill my promise to Mary Ann that the message of her forgiveness be relayed to him.  The response has helped reconnect his Wife, Mary Ann’s Sister-in-Law, and his Son, Mary Ann’s Nephew, with me.  I feel a relief on her behalf that there has been some healing at least with the family.  The interactions seem to enhance the sense of peace she has won.

The day I will come into the house with no one else here is approaching very quickly.  I have not sat down since her death to keep the pain at a manageable level. I hope I can continue that defense mechanism until I get some more cleaning done — my office, the downstairs office area now holding all my outdated financial records. I doubt it will last long enough to get the storage area cleaned up.

The plans that are beginning to emerge will include contact with others, not just constant solitude. That the return to church this morning went all right is a good sign.  There is still plenty of serious grieving yet to do. I do not intend to run away from it.  It will be the key to my survival and ultimate good health.

I plan to collect and list the suggested addresses for a blog with a new theme as this new life begins.  Please continue to make suggestions as they come to mind.

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 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.

We thought the end had come this morning when the bath aide and Daughter Lisa and I were working on her.  She made some awful sounds and her eyes opened wide and rolled back, then she stopped breathing.  After only seconds, she started breathing again.

Poor Bathe Aide Zandra left during that time to let us be with her.  I grabbed a Bible and tried to read a couple of Psalms.  Words and tears mixed, mostly tears.  In a few minutes Mary Ann stabilized to a steady heart beat and steady breathing.

Zandra had pointed out some of the telltale mottling on the bottoms of her feet.  That was at about 9:45am.  We called Hospice Nurse Emily who came out to put a dressing on one of the sores that had developed.  Her blood pressure was low, and the oxygen saturation percentage was lowering.  Gratefully, her lungs were still clear.  Mary Ann again made clear with some scary sounds that she was not happy with being moved.  Nurse Emily indicated the obvious, that it would probably be before the day was done, certainly by tomorrow that the end would come. Emily  was here late in the morning.

We kept close track of Mary Ann’s breathing, which remained pretty steady.  Then we saw that in just an hour or so, the mottling had moved from the bottoms of her feet all the way to her hips.  When we called Nurse Emily about how to determine when to use the Morphine, I told her about the mottling.  She said she would be over at 2pm, an hour from that call.

Emily talked with us for a while and shortly after she left, Mary Ann took what turned out to be her last breath.  We were all immediately at her side.  I had found one of the books I used in the ministry and put it nearby.  I read a beautifully written Commendation of the Dying liturgy.  She died during that couple of minutes.

It is hardly necessary to tell you what came next.  After I gained enough composure, I called Nurse Emily to record the time of death.  Nurse Lisa came first since she was closer.  Then Nurse Emily came and did the official recording of the time.  Nurse Emily and Nurse Lisa prepared Mary Ann for the funeral home to take her.  We had all the time we wanted before they came.

Daughter Lisa and Denis let their two little ones (5 and 7) come in to see Mary Ann. I have worked with families with children often in situations like this.  Letting children satisfy their curiosity and ask questions is very helpful.  It is better to treat things honestly without giving them more information than they want or need.  They need to hear that it is all right for their Parents and the Grandpa cry, and that their Grandma is okay even though she has died.  They need permission to be sad or silly or whatever they need to do.

Granddaughter Ashlyn (5) was mostly excited that she lost her very first baby tooth this afternoon.  She is counting on a very generous tooth fairy.

Son Micah and Becky came in next with eleven year old Granddaughter, Chloe.  This is her first Grandparent to die.  She just needed to do some crying and be nurtured by her Parents.  There were lots of hugs.

Denis took the girls to the park for a while so that they would not be there when the funeral home took Mary Ann out.  They had an appropriate experience without that.

We made all the phone calls we could think to make.  We checked to see if the Funeral could be at 11:30am on Thursday at the church (Faith Lutheran Church, 17th and Gage, Topeka, KS).  It appears that the day and time are acceptable to all parties.

There were more food deliveries today.  There have been emails and phone calls as the news has begun to spread.  At about 4:30pm Pat from Penwell Gabel Funeral home and a helper came to pick up Mary Ann.  I have done so many funerals with them in the dozen years before I retired that they are more friends than they are funeral home staff. Our appointment is set for 11am tomorrow.  We will take the dress and the pictures at that time.  Son Micah is working on a draft of the obituary.

Lisa and Micah have each been doing their grieving in ways that work for them.  There have been hugs and tears.  Each of them has a Spouse who provides them with love and support without limit.  Is is such a comfort to a Father to see that.

Pastor Mike came over and spent the next couple of hours with us, just talking about Mary Ann and our life together, as well as what might be in store for me.  It gave me a chance to talk, something I do especially when I am dealing with my feelings.  It is my mechanism for processing things.  It served as a way to keep at bay the sadness that is sitting in my gut.

I have to say that the sadness is much different from the pain of these last couple of weeks as I saw Mary Ann decline to a shadow of her former self.  The horribly painful knot in my stomach, feeling her pain, untied immediately after she died.  I want her back, but I could not tolerate seeing her in that condition any longer.  I find myself talking as if I am just fine, while just under the words are tears and sadness and a dull pain — a new one, different from before.

She no longer is in pain. That is the best news imaginable.  In my faith tradition there is no doubt that she has transitioned to a kind of joy and peace immersed in love beyond human comprehension. For those whose view of reality does not include a similar spirituality, the release from the pain and suffering of the last couple of weeks especially, is a great good.

My hope tonight is that I will share a bit in her peace by getting a good night’s sleep.  Whether or not I can sleep is another one of those things over which I have no control.  I am really getting tired of all the things over which I have no control!

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