I realize that Quilty is not a word, but in our house it is.  I suppose it should be referred to as a quilted jacket.  We called it the Quilty Jacket.  She wore it as often as the weather would allow in the last few years.  Then there are her Poo pants — as in Winnie, not poop.  They are pajama bottoms so worn, with numerous holes that one good tug would probably pull them apart in any number of places.

When I pulled the jacket out of the closet, I knew I could not part with it.  I can’t count how many times I helped her on with that jacket as we headed out the door.  The rest of the clothing is in plastic bags destined for the thrift store or the Rescue Mission.  It has been a very emotional day, at least on the inside.  Once, I sighed loudly while standing in an almost empty closet and from the bedroom came, “Are you okay?”  This had to be hard on Daughter Lisa too.  I would not have wanted to do it without her.

The challenge was not just the emotional part of it but the challenge of deciding what to do with what.  As others who have been in my position will confirm, decisions are very difficult to make.  The simplest task can seem overwhelming.

There were dresser drawers to clean out.  We finally found her underwear!  The funeral home asked for undergarments with the dress we were to bring over for them as they prepared her.  In her sock and underclothes drawer, we finally found a pair that she had never worn nor would she have done so.  I vaguely remembered getting them out of that drawer and putting them away when she switched to disposables a couple of years ago.  She had a huge number of socks in the drawer, resulting in the need for room.  Her socks were a signature item.  There were varied colors and themes, holiday socks, seasonal socks, polka-dots, animals.  We found the underwear in a plastic bag hanging from a hanger buried in between other hanging clothing.

I knew it would be and it is very hard to look in that closet.  I have spread out the few things I have on both sides to create the illusion that it is full.  It is not working. Actually, I decided to get rid of all things in the closet that no longer fit or are too badly worn to wear any longer.  Getting rid of my clothes was easy.  All I had to do was look at the neck size on the shirts to determine that I could no longer wear them.  Who knew that a neck could grow in later years.  It is an odd genetic quirk, having nothing to do with eating habits and the lack of exercise.  The waists on pairs of pants had shrunk.  Closets shrink clothes.  It is a known fact.  It is sort of like Radon, only not dangerous to people — unless, of course, you try too hard to button one of the shirts and strangle yourself.

I suspect that Monday some time will be the first encounter with the house all to myself, the beginning of whatever will come in life next.  The Kids are doing exactly what is needed and when.  They cannot do for me what I need to do to make it through this.  I cannot do for them what they need to do to get through this.  We can love and support one another, doing what is in our power to do.

I will get out the quilty jacket and remember and, I suspect, do some crying.  Tears do not come easily to me, but it will be important to allow that release when the need comes.  I have decided to get the box of letters Mary Ann saved from forty-eight years ago.  I have not looked at them since I wrote them.  I am sure I will be embarrassed by them.  I was so much in love with her that, if I remember correctly, I even wrote sappy poetry on occasion.  I am surprised she didn’t run away screaming after reading them.

I made an observation to Lisa today contrasting the time of caring for Mary Ann, especially the last months, with the time we are in now.  Oddly, it seems harder to think now about what we went through than it was to go through it.  Even when we were in the thick of the worst of it, I just had to do stuff.  Doing things gave me the feeling that I could make a difference of some sort.  Even if what I did seemed to have little effect, at least I had something I could do.  Now, I have the images of what we went through.  They seem more horrifying when thinking about them than they seemed when I was doing them.  When I was doing stuff, it was certainly hard, sometimes very messy, but I was just doing whatever needed to be done.

Grieving is hard work, harder than caregiving.  There is nothing more I can do for her.  I can only be sad for myself that she is not here.  I certainly do not need to be sad for her now that she is free from the illness.  I can hurt for what she went through, but I cannot change it.  My job now is to figure out what I can do.  I can live the life that I am being given.  I can make plans and do things that will honor her memory, care for my family, and become the most fulfilled and healthy person I can be with God’s help and the resources available to me.  I have absolutely no idea what those plans will emerge and where they will take me.  Whatever they are, they will have to take into account a household income that was diminished by about 40% when I retired, and another 20% now.  With a little creativity and a willingness to live simply, the plans will emerge.

I continue to welcome suggestions for a new blog address that will reflect what my life is about as the next months and years unfold.

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.

Advertisements

What Mary Ann left behind in terms of physical matter is nothing without her.  Today”s Committal service was another simple reminder that she is not here any longer in terms of having a living physical presence.  It seems as if from the very moment she left, my gut already found acceptance that her departure is a fact.  We were privileged and pained to share those last moments with her when finally release came. That was convincing enough.

There is nothing that can be said that can communicate the sadness I feel.  My sadness is no more or less than anyone else’s who feels sadness.  Comparing one person’s to another is of no value.  My sadness is mine.  Lisa’s is hers.  Micah’s is his.  Denis, Becky, the girls’ feelings are theirs.  All I can say is there is a depth to this sadness that is beyond anything I would wish on anyone.  Those of you who have lost someone you love are likely to have a sense of the nature of that sadness.

Again, I will be all right.  In fact, I am all right in that I am experiencing exactly what is needed at this moment to allow survival.  If I tried to stuff the feelings, it would hurt rather than help.  I have a right to these feelings.  How can there be love if there is no possibility of sadness or pain on account of it.

Niece Diana and Al left this afternoon to return to Northern Illinois, where she, my Sister Gayle, and Joy, one of Mary Ann’s three best friends, will plan a gathering for a bit of worship, some remembering and some food, probably some time in July.

Shortly thereafter, Son Micah and Becky along with Granddaughter Chloe returned to their home in the Kansas City area.  Unfortunately, the Jeep they were driving all but broke down with noises threatening to call the trip to a halt at any moment.  Transmission issues are suspected.  Micah was planning to come back tomorrow with the truck to remove the larger pieces of equipment we used to battle the consequences of the Parkinson’s.  Add to that the problem created by water from the last storm invading their basement.  Becky had made a quick trip back to do some cleanup, but time and hot weather has given the mold a chance to really make its presence known.  Adding insult to injury is not even adequate to describe what they are going through.

Sunday afternoon, Son-in-Law Denis will leave for a work-related trip.  The Kids are consciously being measured in the process of leaving me here by myself.  I have a list of things for Denis and Lisa to do in the next day or two.  Assuming transportation issues work themselves out, Micah will be back also for a while.  It will help to get things in order here.  Lisa and Becky have been going through the clothes.  They pulled out Mary Ann’s favorite T-shirts to make throws out of them for the girls.  We will get Mary Ann’s clothes to appropriate places where others can benefit from them.

When I talk about things like that, the words sound very matter-of-fact.  Behind them are all the emotions you might guess would be felt as her things leave the house. I recognize that I can’t keep her.  That is settled.  Dipping my toe into the cold water of being without her a little bit at a time would only multiply the pain and extend it endlessly.

What I want to do now is remember.  Watching the online Tribute Video prepared by the funeral home (penwellgabeltopeka.com) is a very moving experience for me.  When I see Mary Ann sitting on the fender of the 1958 Chevy Impala, she takes my breath away.  I remember hardly being able to believe that she was going out with me.  I see the smile in those pictures that was rarely seen in her last years.  I want to remember the laughter and silliness, the arguments, the great times and the times staying married was very hard work. Forty-four years of marriage does not happen by accident.  Storybook romances are for storybooks and movies and popular songs.  I was crazy in love with her, but we irritated the hell out of each other at times.  The promises we made to one another in front of that Altar were absolutely serious.  They meant something.  Keeping our promises to one another emerged from our love and gave it nourishment so that it could grow.

As soon as the Kids have done what they need to do to help themselves and me take some steps forward in the transition, I will have time to do some grieving that I need to do by myself.

Last night did not include the sleep I had hoped it would since the very unpleasant esophageal spasms decided to spend the night and morning with me.  That problem emerges periodically and without warning or explanation as to why it comes at any particular moment in time.  After that was done, the day went well, given it is the day that we laid to rest the remains of my beloved wife.

After the committal, Son Micah treated us to a meal at Olive Garden.  John and Cynthia brought over a hot pot roast, potatoes and carrots along with side dishes and dessert for supper.  What a treat that was.  We are really getting spoiled in that regard.  Legendary cookie maker Lori left on our front steps two large containers of chocolate chip cookies, one batch without nuts for the kids.  Linda came by with a box of ice cream bars for the little ones (and the big ones) along with bags of homemade very good tasting chocolate chip cookies (we checked) in containers ready for the freezer.

Even receiving gifts of great food and wonderful desserts, have I told you yet how much I don’t like this?

I have been thinking more about whether or not to continue writing posts.  I don’t know yet for sure what I will do, but I think the need to write, if only to maintain my own equilibrium, will continue.  I have ceased to be a caregiver.  Other than reflecting on the years with Mary Ann, which I will continue to do for a time, I am thinking of starting a blog with a new address, still on WordPress if possible.  I am looking for a new address or url. Since I am starting a new life pretty much from scratch, any suggestions for a name to replace “thecaregivercalling.com would be welcomed.

Mary Ann would have liked it had she been sitting with me.  The music was powerful, to her liking.  The sermon was centered on our hope and the certain promise that is the only thing that frees us to face the struggles, lament the losses, and come out alive and well.

It would have pleased Mary Ann to have Niece Diana and husband Al sitting with us. Diana, who simply does not fly no matter what, flew here to honor her Aunt Mary Ann.  Diana was the only one of our two families who was invited to stand up with us at our wedding.  They have always had a special relationship.

Our blood relatives were expanded by our adopted brothers and sisters from Kansas City, three remarkable people who had special roles with the Volunteers (by now totaling at least 70-80 over the years), members of the Spiritual Formation Group that has been a source of strength for the last 8-9 years.

Lot’s of our family and close friends who could not make such a long trip from Northern Illinois on such short notice will have an opportunity in the near future when a date is set to gather there for an event to celebrate and remember Mary Ann. It will include a short worship segment to help clarify just what has happened here and the hope that sustains us.  There will also be food to sustain us.

Have I told you yet that I really don’t like this.  I just thought I would mention it, in case you were unaware of it.

I suppose there were a couple of hundred people who attended the funeral today. What a testimony to the lives that Mary Ann has touched.  As Lutherans are wont to do, they sang loudly, filling that room with the declaration that in the face of death life has won again.  There were instrumentalists, one whose Father is thirty-two years into Parkinson’s, another who lost a Mother and a Sister to forms of Alzheimer’s. The full organ lifted our spirits.  If there were 200 people there, there were pretty close to 200 hugs that helped me and the Kids.

The vocalists included Carol, who has sung for decades and directed the choir here for many years before I arrived.  Her “Now the Green Blade Rises” burrowed into me as I began to feel the significance of the central message of the service.  Kristen’s “Consecration” took the breath away from every one of us in that room. It was done to honor all those who ministered to Mary Ann as Volunteers. I knew Mary Ann would have been especially pleased when Kristen sang “Laudatus Dominum” by Mozart.  It was certainly not possible for me to keep my composure when she sang.  I needed that release.  It was so meaningful that Kristen took time to fly in from Boston to sing. There is no one at any level whose voice is more beautiful than hers.

The readings and the words of Pastor Jim and Pastor Mike drew us to the One in whom we trust, the only One who has the power to make a difference at a time like this.  They celebrated the faith of Mary Ann who has a joyful and secure future that we would not presume to describe but to which we look forward as we journey on after death has done its worst.

Last night was a fairly restful one other than the early declarations of a wayward blackberry that decided 5:45am would be a good time to start the day.  It only took one roll back and forth under the tires of the van to solve that problem.  (Only kidding, Denis.)

I was, of course, very restless this morning, pacing back and forth.  I connected with PT’s Coffee to be sure all was well for a delivery for the dinner after the service.  I had made clear that I was not asking for a favor but would pay for that treat.  When the Kids went to pay for it, Co-owner and friend Jeff would take no payment.  A number of folks confirmed that the coffee was great.

The waterfall stopped again this afternoon, but it was only a GFI outlet.  We don’t know why it popped, but we hope it doesn’t do it again.  Brad, who built the pondless waterfall, came by almost immediately to determine the problem.

Tomorrow brings even more finality to this leg of life’s journey.  There will be a very short committal service at the grave side late in the morning.  It is called an Inurnment since there will be ashes (cremains) in an urn to be buried.  Again, since Mary Ann has already gone on her way, it is simply the period at the end of the sentence.  I don’t really know how that will feel.  Today’s service was very moving especially with the powerful music. Tomorrow’s includes a few short readings and spoken words only.

The Kids have chosen not all to leave at the same time so that I will be eased into a full encounter with the empty house.  I have lots of grieving to do.  I will need time alone to do some of it.  Just as I did during the years with Mary Ann, I plan to experience fully this leg of the journey.  I am convinced that embracing whatever is going on is the best way to get through it and on to what comes next.  If I try to short-circuit the process, avoid the pain at all cost, I will be left to carry the baggage of unfinished business.  If I do that, it will most certainly catch up at some time.  I do not want to wallow in it, nor do I want to waste the pain. I want to feel it and learn from it. That will be a lasting gift to me from Mary Ann and a way for me to honor who she has been during her time here with me.  Doing the work will allow me to get on with the life I am being given unencumbered by regrets and denial.

By the way, have I told you yet that I really don’t like this.  I just thought I would mention it, in case you didn’t remember.

It is time to sleep.

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 my own little package of Kleenexes in my pocket; there were plenty around the room.  We didn’t need them.  They had done a nice job of fixing her up, but her face did not really look like her.  I was pleased.  We had all been there when she left, so the private viewing at the funeral home only confirmed that she was already gone.

We are not done with the tears — by no means is that part of this over.  The tears will come tomorrow when we gather to confront the impact of her loss and at the same time celebrate what in our Spiritual Tradition (Christian of the Lutheran variety) we believe to be a victory.  We understand death to be a real and painful loss for us and a profound victory over death.  The Parkinson’s and Parkinson’s Dementia have done their worst and lost the war.  We still have to work through all the grief that comes with such a loss, just not complicated by a sense of defeat and concern for the one who has died. My mantra has been, “She is fine. We are not.”

This afternoon, there was a time when all the rest of the family was away from the house when I walked in.  As far as I know, except for two or three times when I stopped by to pick something up while she was at her Tuesday Morning Bible Study, that is the first time in the last two years I have walked into the house without Mary Ann being here.  Actually, in the last eight or ten years, I don’t remember that happening for more than a moment to pick up something at the house while she was with someone else in another place. It struck me pretty powerfully.  It was not long before some of the family returned, but it was long enough to determine that I don’t like it.  Have I mentioned before that I don’t like this?

There is nothing anyone else can do about it.  The last thing I want is for people to try to insulate me from the reality of what is going on.  I need to experience it and get used to it.  Any who read this who happen to have lost someone and returned home to live in an empty house understand full well that we have to learn how to accept and come to terms with that new reality.

Tonight we spent over two hours greeting people who came by the funeral home to show their support for our family.  It was pretty much hugs all around.  There were many words of comfort.  There were many who offered to help in any way they could, inviting me to call or come by, threatening to pester me with their care.  They actually meant it.  I know these people.  They meant it.   For a while, I will need to hang back and get my bearings, but it is nice to know that to the degree I am willing to be assertive, I will not need to stay home alone unless I want to.  I like solitude, but I will need to find a balance between solitude and community to remain healthy.

I now know why when talking with people who have lost a spouse sometimes they get a catch in their throat when they talk about the last moments of their Loved One’s life if they were there — even if the death came years earlier.  Images of those last moments elicit great pangs of pain.  I doubt that the capacity to feel those pangs will leave very soon if ever.  I cherish those moments only to confirm for me that it is good that she let go, that she is no longer enduring the indignity of those last hours.  It frees me not to fight the acceptance, somehow wishing her back here.

We are all very tired now. It is time to try to get some rest.  I slept better last night — a very good thing.  Tomorrow will be a day to begin the healing in earnest.

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!

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 have tried to write about our experience honestly.  To do so has required my revealing the harsh realities of painfully ordinary people.  I could try to create the illusion that we are a saintly household above all the weaknesses and failures and missteps that plague regular folks.  I could try, but this blog is not fiction.  It is too much work to make up stuff and keep it all straight.

I got up this morning after a night of watching her, feeling for her pulse, putting my hand on her chest to be sure she is breathing, getting up and putting my ear next to her mouth to be sure I could hear the breath going in and out.  I was tired and grumpy and angry.  Why does she have to be so stubborn?  Why can’t she just let go?  What a jerk I am to be angry at someone who has suffered so for so long and is now in the throes of dying!  I just can’t stand seeing her weak and vulnerable and in pain.  She would hate it!  She is a proud and strong-willed person, not about to be found to be weak.  I am not angry at her.  I am scared and sad and in pain with absolutely no one to blame.

I suppose I could waste a lot of time and energy being angry at God, but pain and suffering are not God’s idea.  God often gets the blame for the bad stuff (usually perpetrated by people doing the opposite of what He has asked us to do).  God more rarely gets credit for bothering to give us the breath of life and everything we just assume is our right, belongs to us.  I can’t waste my limited stamina being angry with the only One who can actually help both Mary Ann and me as we pass through this transition in our lives.

I wish I could cry, but I think the tears are waiting until this is over.  Every day seems like an entire lifetime.  This morning I was grumpy and angry.  I went to the computer to find that one of the other two in our online Lewy Body Dementia Spouses group at the same stage we are in lost her husband finally this morning.  Here is what I wrote to her:

Doris,
My thoughts are with you.  We are still in that time that has extended beyond the fear of the end to a longing for it to be over.  Rest now from your and Philip’s winding, uphill, exhausting and exciting journey to this point.  I wish you well as you take the best of what Philip has brought into your life, discover who you will become now that he is not with you here, and find joy and fulfillment when finally the pain finds a quiet place to remain as your own adventure continues.
Peter

Somehow reflecting on her loss, helped me regain a bit of perspective.  My anger and grumpiness are just a function of feeling utterly helpless, struggling to accept something I don’t want to accept, already missing horribly someone who has been in the center of my life for decades.  Yes, we could irritate the Hell out of each other sometimes, but that is precisely because we matter so much to each other.

The lifetime lived today included treating sores (none open yet), inserting Tylenol suppositories, cleaning and turning bones stretched with bruised skin over them, administering Morphine before the three times of turning to lessen the pain revealed by her grimacing as we worked on her.

The lifetime lived today included good friend and former co-worker Jim and Joanna, hugs and conversation and prayer.  A full, hot meal appeared at the door, delivered by Shari, member of our little Spiritual Formation group that meets for a couple of hours weekly.  Good Buddy Jimmy came by bearing a gift and concern for us.

Today’s lifetime included moments with Granddaughter Chloe, lots of words and acts of support for one another between Daughter Lisa, Son Micah, Daughter-in-Law Becky.  Today included the return of Son-in-Law Denis and Granddaughters, Abigail (who now wants to be called Abby) and Ashlyn, both full of energy and grateful to be in Mom’s arms again after being gone so long.

In today’s lifetime our downstairs bedroom and family room have become a campground.  It is very good that our small town home has three full bathrooms now that we have finished the downstairs and many people in it.

During this lifetime, the one lived today, fatigue has been a constant presence.  The consensus was that it would be good for me to go into the bedroom with Mary Ann, shut the door and just rest. Grumpy Grandpa is not their favorite family member.  I did so at least three times in this lifetime, today.  It helped.  Nothing can remove the tired with which I woke up, but it helped.

Lifetimes include sunshine and storms.  Today began with rumbling thunder, and moments ago the power went off for a moment, turning off the computer and the oxygen machine.  Needless to say, both are working again.

This day’s lifetime will now continue into the night.  At least intellectually, I have determined that it is not necessary for us to be awake and with Mary Ann at the moment of her death.  We love her and she knows it.  We have cared for her and doted on her for days.  Micah asked Lisa how long she has been here.  It has been eleven days that this watch has been going on.  It actually started two days earlier. We would love to have the privilege of surrounding her at that moment.  It is, however, not necessary for me to try to stay awake all night checking her breathing.  While I know that intellectually, we will see if knowing that has even a shred of influence on my insides and my actions.

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.