Daily Challenges


This is way harder than I ever imagined it could be.  I have counseled people, comforted people, ministered to people who have been in this kind of pain.  I thought I understood, felt their pain.  I had no idea just how much it hurt.  I saw it in their eyes, felt it in their tears, heard it in their voices.  I had no idea the intensity of the pain I was seeing.

Friend John from KC called to check on me.  I told him that I was grieving appropriately, keeping my reactions in check, only having allowed one evening of tears.  Daughter Lisa called to check on me.  I was writing thank you notes at the time she called, listening to a CD of Mozart (a gift to Mary Ann from Young).  Just as Lisa phoned, the piece of music that had started playing was a vocal solo with a voice much like Kristen’s (who sang at the funeral), singing Laudate Dominum, the very piece Kristen sang.  I did not react other than in my gut, but that reaction was painful.

If I were counseling myself, I would tell me that it is way too soon to expect any diminishing of the pain.  In fact as everyone, including me has said, it gets harder after the initial flurry of activity comes to an end.  I would tell me that.  I would be right.  So, what difference does it make to tell me that.  It still hurts like hell.

I now appreciate just how courageous all those people are who have gone through this and survived to live again.  Now I understand.  I can only hope that I will find similar courage.  I am confident that I will be fine, come to life again.  I just don’t have that time in sight yet.

I am currently planning on writing two posts tonight.  This one is about my struggle.  I just could not sit down and start writing about Mary Ann’s and my history together (the second post I plan to write tonight).  I needed to release some pain in words.  I can assure you, if you have not yet tired of it, you will soon tire of me whining about how much this hurts.  Almost everyone I have counseled during times like this has commented on how hard it is to find people willing to listen after a while.  People just tire of hearing the same sad story of how much it hurts.  If they don’t actually say it (sometimes they do), they are thinking, “when is he/she going to get over this, they have been whining too long.”  The problem is, it still does hurt, long after everyone else thinks it shouldn’t any more, that he/she should be getting on with life.

The harsh reality is, no amount of talking, thinking, praying, meditating, writing, crying, walking or eating ice cream is going to take the pain away.  It will have to run its course and find a tolerable spot to live in me as life goes on.

At this point, too much quiet, alone time, as much as I have relished it in the past does not seem to be a good idea.  I suspect I am more in need of social interaction than solitude.  In social settings a holy hypocrisy takes over.  It calls me to be better than I feel, to be okay even if I am not.  I don’t feel okay, but if I wait until I feel okay to re-enter life and function normally, it will be a long time in coming.

I got up early this morning and went to Cedar Crest again to walk a couple of miles.  It was a cool morning, blue sky with whispy white clouds, some with little puffs in rows.  The birds were singing again, Meadow Larks, Robins, Blue Jays, Red Winged Blackbirds, a Great Blue Heron and more that I didn’t recognize.  What appeared to be a Green Heron flew over at one point.  They are far less  common than the others.

I did some chores, changed the linens on my bed, washed them along with the few things I had in the hamper.  I am going to have trouble getting enough for a load of wash and filling the dishwasher full enough to justify running it.  I fed watered plants and fed the birds.  The routine tasks help give me a sense of accomplishment, however insignificant tasks are.

I made a necessary trip to the grocery store.  It felt strange to be pushing only the grocery cart instead of pushing the wheel chair with one hand and pulling the cart with the other.  I bought nothing frivolous, but it came to $75.  What does one person need with $75 worth of groceries.

Even though I have only done a small percentage of the thank you notes, I am glad to have gotten started.  As I suspected, that is a therapeutic activity, if sometimes a little sad as memories are triggered.

Writing about the intensity of the pain has helped take the edge off.  Now I am ready to write some more about Mary Ann’s and my life 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.

It is the name of a movie and what happened at our (my) house last night.  I set the stage in a way that would allow it to happen.  I needed for it to happen.  It changes nothing.  It just needed to get out.

After finishing writing last night, I did a few chores and then got out the box of letters I wrote Mary Ann.  I put on the CD that had brought me to tears months ago when we first realized it was time to call in Hospice.  I read a few of the letters.  Actually, the letters did not tap my emotions.  They are pretty boring.  I ramble on about Greek tests and singing groups and learning recitativs for someone who couldn’t sing the solos at the last minute.  Each letter so far, and I am sure all of them, end with declarations of love in as many different ways as I could figure out to say them.  I have read eight of the letters so far.  Understand, for three years, except for summers when we could see each other, I wrote her a letter every night.  (No wonder I have gotten into this blogging every night business.)

Remember, I was nineteen or twenty years old and very much in love.  They sound like something from a bad romantic movie.  The only redeeming element is that I really meant what I was saying: “I don’t know how to tell you just how much I love you and miss you.  I can hardly believe it myself.  I love you.”  Then another: “Even if you didn’t love me — I love you enough for both of us.”  I will spare you any more for now.

It was not the letters. Certainly the music lowered my defenses and helped me let go of my control.  I just pulled down a picture of the two of us from a year or two or three ago.  It is the one that was cropped for the obituary.  I looked and I remembered the indignity of it all.  I remembered what she endured looking from the outside in rather than from inside the struggle.  I could not tolerate the thought that she is gone.  I spoke out loud because I couldn’t not speak.  In a moment of self-pity, I asked “Why did you give her to me to love and then take her away.”  I was angry — not out of control angry, just angry.  “It’s not fair that she should have had to suffer so — she did nothing to deserve it.”

Please understand, I realize that God doesn’t like death and sickness any more than we do.  I realize that God understands death from the inside out and the outside in.  God didn’t wish for Mary Ann to suffer, for me to be in pain with her.  What God did was hang in there with us through it all, never letting go of us.  Understand also that God’s relationship with us is strong enough and intimate enough to allow anger to be a part of it.  I needed to be angry at that moment.  Read the Psalms some time and see just how many are laments spewing anger at the unfairness of life.  Pastor Mike addressed this matter at the funeral.

Noisy tears flowed.  The dam broke.  Every time I looked at her face and remembered, the tears flowed.  In an earlier post, I mentioned that I used to count how many times I had cried in my adult life.  The first time was after I got the phone call that my Dad had died.  I was 42 years old.  Until last January, I had not yet run out of fingers on one hand to count the times.  I have stopped counting and will never do so again.

I guess there was some part of me that still thought it was a sign of weakness for a man to cry.  I knew before and I know still more certainly now that crying, actually letting the pain in far enough to feel it, is an act of courage that is demanded if wholeness and healing will come.  Running away from it or pretending it isn’t there or encrusting it in some sort protective casing is hardly the path to strength of character and the ability to endure whatever comes.

There was an interesting coincidence at our Spiritual Formation group this morning.  The lesson in our discussion booklet for this morning was entirely devoted to the need to let go, to die, before we can rise to new life.  The last of the four discussion questions printed at the end of the readings was, “What role does the reality of death and the deaths of those you love play in your life?”  Talk about timing.

Today was a busy Wednesday, as they often have been for some reason.  It started with the Spiritual Formation Group on the deck.  While that was going on Landscaper Sheila was doing her final maintenance of the landscaping she put in this spring.  She will return in the fall to do some clean up and prepare it for winter.  I am on my own for the rest of the summer.  Those plantings are in great jeopardy!

In the mid-morning, Dave came over to get a couple of death certificates and obtain the signatures needed on a variety of forms for the financial issues following a death.  Then Kristie came over to do the monthly house cleaning.  Now the house is not only empty but empty and clean.

I did some overdue posting in the computer check register while she cleaned.  It will take a while to get my bearings in that arena.  Everything seems to be on course.  I have configured the online emails from the Caregiving Spouses of those with Lewy Body Dementia so that I have to go to the web site to read them.  As a result, the hours I have spent checking emails have pretty much been eliminated.  I just can’t read those emails at the moment.  It takes me right back to something from which I need a break for now.

I had leftovers from the funeral dinner for lunch and dinner.  Next I will start on all the containers that Lisa put in the freezer when food was coming in faster than we could eat it. It should be many weeks before it is necessary for me to exercise my culinary skills.

I decided it would be best to get out of the house for a while, so I made a quick run to pick up a couple of things.  One is a zippered cover for a pillow.  No amount of soaking in Oxy Clean or spraying with Spray and Wash is able to get the stains out.  Mary Ann was taking Plavix and Aspirin to thin her blood because of her stroke.  Often her gums or nose would bleed a little during the night.  The pillow is certainly clean, and now it looks that way also.

The house is becoming very neat and orderly and boring.  I still hope to at least get my office, which is a complete shambles, cleaned up.  That happening would be right up there with the Miracle of the Loaves and Fishes.  Actually, I suppose my problem is that I have the twelve baskets of leftovers and nowhere to put them.

Here are the ideas that I have seen so far for the title of a new blog to replace this one: newlifeemerging.com; calltocontemplation.com; buildingnewlife.com; next chapter; life after retirement; thecontinuinglife.com; my journey continues; life’s journey continues; a new role begins; continuing life’s pathway; making new memories — remembering the old; progressive pathways; pathways of personal progression; day by day; heading home; homeward bound; faith journal; moving on; stepping stones (to healing).

By the way, whatever it is, it needs to be in the .com format and checked with a site like godaddy.com to see if it is available or already in use.

Well, this day has come to an end.  As I mentioned to Son Micah, the challenge is to manage the pause and stop button on the video running in my mind of Mary Ann’s most difficult days including the last one, so that there will be minimal flooding from the broken dam.  Today was better.

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.

Lisa and the girls left about an hour ago.  What now?  There are plenty of things that need to be done.  That is not the issue.  There are thank you’s to be written. That will be very therapeutic for me.  The list of minor and major tasks is long.  At the moment I am doing a lot of easy, little things here at the house.

…It is now just me.  Schendel Pest Control Tom just found a huge nest outside the sun room and dispatched the ants.  There are still a few inside the house, but they are feasting on Tero, and if all goes well will be gone soon.

Sun Room contractor Jerry just called to begin work, hopefully, on putting the shade up on the deck.  I guess I am not going to be alone here today after all.  Tom and Jerry will have been over. Who knew?

I am experiencing what I have heard about from others hundreds of times.  It is hard concentrate.  It is hard to muster the stamina to do anything that takes any thought.   Getting out of the house to run errands sounds okay, but there are so many things that need to be done, running errands all day I suspect would get very frustrating.  I would be anxious to get back to the things that need to be done.

By the way, I am not (at least at the moment) whining about my situation.  I am just describing it.  There will, I am sure, be plenty of whining going on soon enough.

There was a large stack of cards in the mail again today, along with a packet from Thrivent (our church sponsored financial organization).  There was in that packet a CD of some songs that actually turned out to be helpful while I opened cards.  This is a time when simple truths, ones with which we get bored in good times or that slide into the back corner of our awareness, become very powerful.

Jerry needed help holding up the other end when he put up the shade on the deck.   That was a great distraction.  He is a talker too.  As soon as the sweat dries, I will begin running some errands.

…The errands included taking a death certificate to the bank.  All that needed to be done was get it into the records there.  I took back to her the tools that Occupational Therapist Karen had given Mary Ann and trained her to use, so that Karen could give them to other patients.  I stopped by the florist, Flowers by Bill, to thank him for doing such a wonderful job of arranging very fresh flowers that have lasted well.  He is the one who would provide much more than $10 worth of flowers when I came by to get them for Mary Ann.  I told him that I may be coming in on occasion to do the same, this time to enjoy myself and then remember.  I dropped glasses off at our eye doctor’s office for the Lion’s Club.  Looking at two of the four pairs was a frightening reminder of Mary Ann’s battle.  They were so scratched from falling on her face that the lenses were no longer usable.  We had had to replace them.

I guess I said it last night, but today it has been painfully clear that remembering her with so many abilities stolen from her is almost too much to bear.  When I think back to the challenges I had as a Caregiver, I can certainly remember the times I reached the limit of my ability to cope, but I remember with no feelings of distress. I don’t feel in any way sorry that I had to do the things that were required.  I would do it again without hesitation.  I have been trying to keep them out of my mind, the images of her sitting in that chair unable to do almost anything, trying to get up, falling, struggling to turn in bed, hating when I had to feed her.  My emotions are too raw to continue this train of thought.

The shade is now up on the back deck.  If the sun is out in the morning, the Spiritual Formation Group will get to try it out.  If rain comes, we can now sit inside the house in full view of the waterfall, listening to the rain on the speaker that brings in the outdoor sounds.  Since I am now alone here, there is no one to disturb.  Damn, I hate this!

Again, I am all right, given the circumstances.  It is very appropriate that I hate this and that my emotions are sometimes raw.  I would be in trouble if I didn’t recognize my feelings and allow them to see the light of day.  It is from that process that new life begins to emerge.  I also have moments of feeling the freedom that I have now that there are no longer the constant demands.  I am grateful that Mary Ann is whole again.  I would not want her back just so that I could feel better.  I just miss her.

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.

Someone came to the door yesterday afternoon asking if I knew where the next door neighbors had gone on their trip.  I didn’t know they were gone.  Then he explained what he had just found.  The back door was standing open and there were a dozen or so beer cans on the back patio.  The cans were unopened.

He explained that he had painted the cement patio on Friday and was checking to be sure that it was dry and to see if it needed a second coat.  The neighbors had been on a short trip to Texas.  Just days before their sump pump had stopped workings during a heavy rain storm.  Their basement was flooded.  For three days the cleaners were working, even one day while they were gone.

Today I found out that the thieves took the cash and jewelry.  They probably left in a hurry when the case of beer they decided to take apparently broke open on the patio as they were leaving.  The patio is no more than 25 feet from my bedroom window.  I heard nothing.  It is certainly unnerving.

It was death certificate day.  I picked them up at the funeral home.  We hardly need a piece of paper with a County Seal on it to tell us what has happened.  They will now be used to trigger a variety of transactions, most of which have no tangible impact other than keeping records straight on some computers somewhere.  There was not much available in the way of insurance since she was uninsurable due to the Parkinson’s Diagnosis twenty three years ago.  All the follow up tasks after a death at least have the side effect of keeping a person busy.

Today’s outing included taking Mary Ann’s clothing to the Rescue Mission thrift store. It needed to be done, but it was hard to do.  There was a sinking feeling as we helped unload them.  Other than a number of her well-worn favorites, the cookbooks went to the Friends of the Library to be sold in the annual book sale.  Mary Ann loved the library.  One of the professions that would have been satisfying to her was Librarian.  She loved old book stores, especially one in the Brookside area of Kansas City, Missouri.

On the way, I picked up from the repair shop the watch that my Mom had taken me out to buy near the end of my Senior Year in high school.   It is a Girard Perregaux for which she paid $85 in 1961.  The jeweler said that if a comparable could be found now it would be closer to$1500. It has a self-winding weight in it.  Still works. I don’t really care about the value.  It is not for sale.  It is for Son Micah to have.  I wear the gold watch my Dad received many decades ago when he retired.  It actually is of comparable value.  I guess old can be good sometimes.  That is good to hear.

Talking about “old,” I am now in contact with a classmate from the Second Grade, Miss Miller’s class.  That was a memorable year.  I got sick after eating a piece of peach pie.  Before it was over, my Dad plunked me down on the examination table at the doctor’s office and declared that I had appendicitis.  Dad had lost a 5 year old son to peritonitis on Christmas Eve, and almost lost another son when his appendix burst on the operating table.   He was not about to lose another son.  (The very oldest boy their first child had died shortly after birth.)  Sure enough, I ended up on the operating table having my inflamed appendix removed later that same day.

While in the hospital recuperating, it was discovered that I had Rheumatic Fever.  I missed the second half of the Second Grade year (four months).  Miss Miller spent the summer going over the school work I had missed so that I could go on to the next grade.  That diagnosis was a dominant part of my life until I graduated from high school.

On the way back from our errands, we made the promised stop at G’s for some frozen custard in memory of Grandma.  Not only were the treats as good as expected, one of my favorite young people from the congregation dished it up for us.  She is actually sort of annoying, she is a very good athlete, very smart, very pretty but not snooty about it, committed to helping others and making a difference for good, and she is a hopeless smart-aleck — all of that and sweet and caring too.  Talk about annoying.  She even admitted to reading this blog sometimes.  You know who you are!  Even after I became a Geezer I found myself enjoying the bits of contact I had with Youth in the congregation.  I spent the first 18 years of my ministry in service especially to Youth.

Someone just moved in two houses away.  She came over to introduce herself to a couple of us talking outside.  Soon there were four of us, two who had lost spouses two years ago.  As we were talking I soon realized that for the last many years, I would not have been able to stay and talk, but would have rushed into the house to check on Mary Ann.  It will be hard to get used to this new reality.

Today we stopped by church to get the list of gifts given to Faith in memory of Mary Ann.  I was surprised at how many gifts had come in.  I have started thinking about how what comes in should be used.  It would please Mary Ann very much to be able to provide that tangible evidence of appreciation of all the years of caring for her by so many Volunteers from Faith.

Early tomorrow is the time that Lisa and the girls leave on their way back home to Kentucky.  It is hard to imagine getting through these events without Lisa and Micah’s help and support.  Like it or not, tomorrow will be the first day by myself in the house.  It is a new reality — can’t go back.  Right now I am running on adrenalin. The crash has to come.  When it does, I will get through it.  The two who lost their spouses two years ago were emphatic about what is the hardest thing, the loneliness. No one can fix that, even by trying to keep the surviving spouse busy.  We just have to deal with it and survive it.

For now, the odiferous ants have arrived.  It is an annual invasion.  The Tero is out and they are gathering, eating it and, hopefully, taking it to the nest to kill more. Pest Controller Tom will be by tomorrow to do some more serious work on them.  Hopefully they will soon leave the premises. I am certainly not interested in their company, even if I do get lonely.

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 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.

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.

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.

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