June 2010


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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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.

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That was the question Son Micah asked.  He had not been with us at the time Hospice Social Worker Kristin answered some of those questions.  In forty years of ministry, I have become painfully aware of the process.

We will call Hospice.  The Nurse will come and make the declaration.  We will have all the time we want with the part of Mary Ann we can see, though life has left for another place.  The Nurse will call the Funeral Home to come and take pick her up to begin preparing her for the service.

We will begin going down the list of folks to notify.  I will not put anything on Facebook or the Blog until we have connected with as many as possible of those whom we intend to notify by phone or email.

When the funeral home vehicle arrives, we will send with them the dress, a picture to help them in their holy task of preparing her for viewing.  Once the Funeral Home folks have left, we will conclude the contacting, and try to begin processing what has happened.

We will set an appointment with a Funeral Director for the next day.  There will be an obituary to work out.  We will go over the plans we made many years ago.  Since we have those plans in place, we will not need to go to the casket room and make all sorts of decisions. They are already made.  We will need to write a check for the opening of the grave site into which the ashes will be placed the day after the service here.

One of the things I did today was work out a proposal for the flow of the service, the hymns and readings.  That job is normally left to the Pastor who will do the service.  Pastors are trained to do that, equipped to do that and experienced in doing it.  Since I served as a Pastor for forty years, Pr. Jim is willing for me to have input.  I finalized the hymns we prefer and did what I have done hundreds of times before.  I put them all together into a traditional Lutheran Funeral Service — admittedly, one with a little more music than usual.

It felt good to put that service together.  It did not feel good that the service will be for Mary Ann.  I couldn’t bring myself to actually write her name into the proposal I sent to Pr. Jim and Director of worship Young.  It just felt good to do something, something I know how to do.  Everything else is so completely out of my control, many of the things I am doing with Mary Ann are new to me, we don’t know from one moment to the next what will happen — it just felt good to accomplish something I am actually equipped to do.

We are all getting tired.  Sleep is tough to come by.  I get up at various times during the night to put my hand on Mary Ann to see if she is still breathing.  I wake up in the wee hours of the morning and just lie there, thinking and trying to doze a little.  The kids downstairs sleep fitfully, listening for my footsteps — reassured when they hear them and there is no pounding on the floor for them to come up.  Actually, I will also push the button Mary Ann used to push to get my attention when she needed me.  It is an electronic battery operated wireless doorbell system.

When I went out to run a couple of quick errands late this afternoon, Mary Ann’s breathing acted up, there were some odd and distressing movements, so the kids called and I came back quickly.  I appreciated that they called right away.  She seemed to settle down, but her breathing continues to be very shallow and a little less steady than it has been.  Otherwise, we remain in a holding pattern.  We keep hoping she will let go. It clearly is harder and harder on her when we move and shift her to avoid the bed sores.

Nurse Emily came and delivered some more briefs and adhesive pads for the red spots to keep them from becoming open sores if possible.  She reassured us that we are doing a good job of caring for Mary Ann.  When I asked about it, she said that when we see her in pain, it is better to give her the low dose more often than increase the dose.

I spend a lot of time talking with Mary Ann when I go in to be with her. I have talked about how fulfilling our life together has been.  Whatever we have done, we have been given the gift of wonderful children who have married good people, and produced beautiful, vibrant, healthy Grandchildren, filled with potential.  We could hardly ask for more.   It seemed odd when I realized that I fell in love with her shortly after I turned 19.  I am 67 now.  When I mentioned that to my Daughter, Lisa said she couldn’t remember back to when she was nineteen.  Mary Ann and I have had a lifetime together.  I have said that I have no regrets.  As I think about it, I do regret that we didn’t hug more.  She is too fragile for me to do it, but I just want to hug the stuffings out of her.  (There are no stuffings left to hug out of her — she is skin and bones.)

Don and Edie (and Son Zach) came by to drop off some orange sweet rolls — very tasty.  Don and Zach spent a little time with me talking about how to deal with the pump problem in the waterfall, the Calcium buildup.  Later, Volunteer Coordinator Mary brought by a Tuna Casserole, some of which we enjoyed for supper, along with leftovers from last night’s dinner.

In the evening, I ventured out for the fifteen minutes it takes to get a cup of coffee at PT’s and return home.  One of the owners, the one who travels to visit the locales and the farmers all over the world from whom they buy the coffee beans was there.  Jeff has a wonderful and caring relationship with all those with whom he works to provide the best coffee possible.  I have interacted with him on occasion since we arrived here in 1996.  He handed me his card and told me to call him if we need coffee brought to the house tomorrow.  He would arrange for it or do it himself.  Home delivery is not one of the services coffee shops provide.

Terry, one of Mary Ann’s three friends from childhood phoned this morning to check on her and wish her well.  All three of them and so many others have been checking on her, sending their love, and including her and the rest of our family in their prayers. This is a humbling experience for us — one we, of course, would never have chosen.  It is the capstone of Mary Ann’s life and an experience after which I will never be the same, hopefully a better person for it.

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

The Family has hunkered down now.  Daughter Lisa from Kentucky will stay for the duration with Denis and the girls coming when the time is right.  Son, Micah, Daughter-in-Law, Becky, and Granddaughter from an hour away (the Kansas City area), are now also camping out in the downstairs tonight.  We need to be close to one another and close to Mary Ann.

Of course we cannot know when Mary Ann will let go and head off for the next leg of her journey, or more appropriately said, the destination.  Her breathing is very shallow.  Last night I got up three or four times and went over to touch her chest to determine if she was still breathing.  We want her to stay longer and at the same time to just quietly breathe her last breath without distress.

Her condition seems fragile.  It is getting harder to find a position that does not put her weight on one of the red spots that have been threatening to transition into bed sores.  Hospice Aide Sonya came and managed to give her a bed bath, wash and blow dry her hair.  She was, of course, completely unresponsive during that activity.  Her fever was not very high this morning, but enough to warrant giving her a Tylenol suppository.  This evening her temperature seemed to the touch to be back to normal, so we did not give her the Tylenol.  We have only given her two of the lowest recommended doses of Morphine, since she has seemed comfortable most of the time today.

While there still appears to be none of the expected mottling of the skin, she seems fragile enough to die at any time.  It is getting harder to compartmentalize my thinking and feeling.  The kids seem to share that problem.  We go about our business as if we are accomplishing something, doing various tasks, talking with folks on the phone and those who came by today.  Then we walk into that room and look at the person we love and can’t bear the thought of losing from our lives here on earth, and the pain wells up, ready to break open.  It is hard to maintain the boundaries between the compartments in our lives.  When I am doing other things, outside that room, thoughts of doing whatever it is with her gone from here breach the boundary between the compartments.

There have been moments when pleasing gestures and gifts have lifted our spirits.  Last evening, Neighbor Harlene brought over food to us, so that we would have dinner tonight.  We already started on the chocolate chip cookies last night.  Later today, Janet and Joe, former parishioners, brought over some supper.  Both meals could be prepared with portions for tonight and tomorrow and portions to go in the freezer for later times.  I will appreciate having nourishment readily available after things settle.

Pr. Jim came by to spend some time.  I shared thoughts about funeral plans and he was very willing to help us have a service meaningful to us as well as any who gather with us.  We have the chance of having two wonderful vocalists sing at the service Carol and Kristen.  Carol has been a part of the congregation for many years, directing the choir for a large portion of those years, singing solos often.  Kristen (Carol’s voice student for many years) is based in Boston (has sung with the Boston Pops), sings professionally, and has as wonderful a soprano voice as I have ever heard.  Those plans are still in the works.  We will see what finally is possible.  We will talk with the Director of Worship about hymns and special music. In our tradition we are free to use joyful music rather than dirges at funerals.  We leave with a sense of victory rather than defeat.

Sister Gayle, Niece Diana and Friend Joy have agreed to team up to handle the logistics of a memorial gathering in Northern Illinois for all those who would not be able to travel here for the service.  The plan is that it will include food, memory sharing and a short worship service in an informal setting.

Then, at one point today, the doorbell rang and there was delivered a small vase of flowers, yellow roses, yellow alsternaria and white daisy mums.  Both Mary Ann and I enjoy having cut flowers in the house. We just love flowers outside or inside.  That vase of flowers perked our spirits.  Gretchen, who sent them, was in the first Confirmation class when I arrived in 1996 at the church from which I retired as Sr. Pastor two years ago.  She is soon to complete her thesis as Dr. Gretchen.

A foam wedge was delivered this afternoon to help keep Mary Ann in a position that avoids putting more pressure on the red spots that are threatening to provide serious discomfort.  We are putting Tegaderm patches on the red spots.  They are an almost transparent thin plastic patch that has just enough cushioning to give the skin a chance to heal when red spots appear.  If any of the spots transition to open sores, the Hospice Nurse will come and put a dressing on them.

I have taken a number of breaks from writing to go in and check on Mary Ann’s breathing.  I have thought about what it feels like to be in this time that some readers of this post have called sacred.  Pr. Jim noted a sense of peace when he has visited.  It is a time of very complex dynamics.  There is hardly a more sacred time than the last moments of life.  Death certainly is what helps define life. Someone observed that there is absolutely no difference in the amount of matter, the weight, the chemical composition of a body before and immediately after death.  There is one difference.  Life is gone.  Life does not have material substance, but look at the difference it makes.

These moments of transition certainly are sacred.  There is peace.  There is pain. The one does not diminish the other. Is it peaceful pain or painful peace.  At any rate, they are folded together into one sacred time in our lives, Mary Ann’s, the Kids and Grandkids, and mine.

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She was cold up to her knees.  We called Hospice; the Nurse just left.  I have been in many hospital and Hospice House rooms as the end approached and finally came.  Cold feet meant that the end was creeping up the body.

Her vital signs were good this afternoon when our regular Hospice Nurse made her visit.  The conversation then suggested that the week end, but not likely past the middle of next week would be the time of Mary Ann’s departure.  The fact that she is taking in no food or water played into that expectation.  She would not take even a straw full of water dropped into her mouth.

When we uncovered her tonight to change her, I felt her cold feet.  There is a light yellow hue (not jaundice sort of yellow) up to her knees, and to my touch she feels very cold.  The Nurse checked her pulse in her foot and it was still strong.  Mary Ann’s feet did not feel to the Nurse to be cold in the way they are cold when the dying process has reached the final stage.  There was no mottling on her legs, something expected when death is getting near. Her fever was back to almost normal.

The Nurse reassured us that given the signs, she was very likely to make it through the night. The thought that she might go tonight scared me.  Of course, it is hardly a surprise that her death is imminent.  My defense mechanisms are holding tight and trying not to let go until the end actually comes.  As a result, I am living in a holding pattern.  When there is not some change that tells my insides something else, they maintain the illusion that this will be going on indefinitely.  Every time I go in and look in her face, my insides waver — reality begins to overwhelm the defenses.  The cold feet and legs breached the defenses and started to crack open the dull pain in the belly.  The Nurse took the pressure off and the crack closed for the moment.

One of the spots from lying on one side was concerning this morning.  That red spot needed some attention, so when Nurse Emily came by, we asked her to check it.  She went back to the office to get a translucent dressing to put on the spot.  We will turn her more often tomorrow (morning, noon, supper time, before bed).

During the day three different times spread throughout the day, Mary Ann’s face indicated that she might be in pain.  Each time we gave the lowest dose recommended of Morphine.  Each time it seemed to help.

Hopefully there will be some rest tonight.  Today was a day with much less activity than yesterday.  I got a routine fasting blood test this morning at a nearby lab.  Somehow, a small chip managed to break off a spot on a lower tooth in the very front of my mouth.  My tongue spent twenty-four hours rubbing against that spot — no matter how hard I tried to stop it.  The pain in underside of the tip of my tongue forced me to call the dentist.  He filed it off the rough edge of the tooth so that for the moment the pain should subside  There will have to be more work done at some time in the future.

Last night when I first went to bed, I thought I would leave the light on and watch Mary Ann breathe.  Sometime just before 3am and realized that I could turn off the light I was using to see her body move with her breathing, since I was asleep anyway.  So much for that idea.

Somewhat reassured about tonight, I hope to get some rest.

She mouthed the answer, “Yeah,” but she may as well have shouted it from the rooftops.  I responded, “Thank for the best gift you could ever have given me.”  She has not moved her mouth in response to anyone or anything in about a day and a half.

Her eyes have been closed most of the time.  One eye has opened on occasion, but with little evidence there was much consciousness behind it.  When I came in to be with her for a bit this time, both eyes were open.  I wasn’t absolutely sure she actually seeing me until she mouthed her response.

Her fever is stable at the moment, only a degree and a half above normal.  It has been at that level all afternoon and evening.  We will still use a Tylenol Suppository tonight to try to keep it from rising by morning.

Today was a typically busy Wednesday, in spite of what is going on here.  The Spiritual Formation group met on the deck.  I realized again just how important that two hours weekly is for helping me keep my perspective and my spiritual focus.

During that time Volunteer Elaine came and read to Mary Ann.  Shortly before the end of the group meeting, Bath Aide Zandra came.  We figured out that she had been coming to see Mary Ann twice a week for almost eight years.  No wonder she has shed some tears.  Zandra did a thorough job on Mary Ann’s bed bath, hair washing, as well as changing the bed with Mary Ann in it.  It was good that Lisa came in since she is experienced and could lend a hand.

Hospice Social Worker Kristin came by for a while.  It was helpful to have her knowledge and experience available as we talked through what is going on here.  She confirmed what I already knew, that when death comes, the Hospice Nurse will make the necessary phone calls to get all the basic tasks accomplished so that the family can focus on their notification calls.

Landscaper Sheila came by to work on the garden and waterfall, doing clean up, adding a couple of things needed.  As a gift, she put some Petunias in a huge pot on the ground at the edge of the deck.

Marilyn, a member of the Lead Staff at the church from which I retired, stopped by to spend a few minutes with Mary Ann and some time with the rest of us.  She shared a reading and prayer with us, providing some words of reassurance about the Lord’s presence with us no matter how stormy our life may be at the moment.

Pastor Mike, who will preach at Mary Ann’s funeral (why doesn’t that get any easier to say), stopped by to spend a few moments with Mary Ann, and share some time with us.  We reminisced a while since our history together goes back to 1972.  He listened to stories about Mary Ann.

Then friend Jeanne came by to spend a little time with Mary Ann.  It was a difficult time for her.  Pastor Mike was still there, so we talked together about how hard it is to handle what is going on here.

I have to say, we started out with the refrain that we don’t like this, and as time goes by we are not liking it more and more.  That is an awkward way of saying it, but you catch my drift.  It is more and more painful to go into the bedroom and look at her pretty face, immobile and helpless — at the very same time it is more and more painful to be outside of the room and not with her.

I am glad to be able to feel that pain.  I don’t want it, but it is reassuring evidence that I am still alive and still care and not in denial.  It has always struck me that when someone has a paralyzed limb, one way to check whether or not it is healing is to stick a pin in it.  If the owner of that limb jumps in pain, the arm or leg is alive — healed.

Those who have been where we are, but for a much longer time, have often commented that after a while, they just can’t feel anything any more.  They go numb.  Good news brings little joy; bad news brings little pain.  They have to insulate themselves from their own feelings.  The ups and downs have worn them down.

We are still able to feel the pain.  I can assure you it is more than a pin prick.  Because we can still feel the pain, we still get to feel the love.

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I called the Hospice Nurse when I saw Mary Ann shivering at bedtime last night.  She suggested I take her temperature, and if it was over 100 degrees, she told me to give her some Tylenol (rectally, since she can’t take oral meds any more).  Her temperature was below that.  I covered her to help with the chills and eventually they subsided.

When I got up this morning, the first thing I did was take her temperature.  When taken under the arm it is necessary to add a degree to get the actual internal temperature.  It measured 102.8 plus the added degree, 103.8.  I gave her the Tylenol and phoned the Hospice Nurse.

When Hospice Nurse Emily came over, she checked Mary Ann’s vital signs.  The fever was a little lower than earlier this morning, but not much.  Mary Ann’s blood pressure was fine, her oxygen level was fine (she is receiving oxygen), her lungs were clear, her heart rate was up some.

Nurse Emily said that her heart is beginning to work harder.  The fever is often a part of the process.  Mary Ann clearly has begun actively dying.  Emily said it this way, “Probably not today, but I could be wrong.”  She added later in the day that she expects Mary Ann to be gone by Friday based on her assessment of her condition.

Those words were very difficult to hear.  Lisa, Micah and I keep telling each other how much we just don’t like this.  It is, of course, a good thing for Mary Ann to move to the next leg of her journey, free of all the problems she has endured here.  With that said, we still don’t like it.

The good news is that Mary Ann continues to appear very comfortable.  The fever has edged down a bit.  Mary Ann is not particularly pleased when we jostle her around and poke things in her bottom, but that is just part of it.  Other than those times, she rests peacefully.  Her breathing is not labored.  Her heart rate continues to increase.  Her normal is about 60.  When Emily checked it this morning it had risen a little over 80.  The last time I took her pulse this evening it was about 100.

We have spent the day talking about the funeral, whom to call, what to do back in Northern Illinois where we both grew up and still have family and friends.  The words come out of my mouth as if we are just making funeral plans for someone.  My gut is doing flips while wearing cement overshoes.  (I have no idea what that means other than that it hurts like Hell.)

I have had to finally start thinking about the afterlife.  Hers will be great.  Mine, not so much.  I started making a list of things that I will need to do.  Discontinue Lifeline, let the Bath Aide know not to come — very many more things like that.  What will we do with Mary Ann’s clothes (I can hardly stand writing this) and when.

As I am writing this I am trying to move inches along the path of coming to terms with what is happening.  This morning, long time friend, John from KC, called and offered support.  Later today, Volunteer Coordinator Mary and Parish Nurse Margaret stopped by, brought cookies and spent a little time with Mary Ann.  She, of course, does not respond at all any more, but it is very likely that she hears what is being said to her.

Son-in-Law Denis and the girls headed back to Kentucky.  Lisa has stayed for a few more days, depending, of course, on what happens when.  Micah, Becky and Chloe spent the afternoon and evening here.

We are in a time warp.  There is no sense of what this day is in relationship to other days.  Minutes seem like hours.  Days seem like an eternity — but not long enough to be with Mary Ann.  Sometimes we wander around the house.  Sometimes we eat.  Sometimes we talk.  Sometimes we sit.

We now have all the elements of the Comfort Kit that Hospice talks about.  We have Morphine if there is respiratory distress or severe pain.  There is none so far, other than the heart pain that subsided with the oxygen and one tiny dose of the Morphine.  We have Tylenol tablets for the fever and will receive Tylenol suppositories tomorrow from Hospice.  We have Ativan tablets and will receive Ativan suppositories tomorrow.  Ativan will be used if and when the agitation hits that often comes and the dying process moves along.

I just glanced at the last few posts on this blog.  I can’t believe how fast things are moving.  There are some things that are helping us as we move through this time in all our lives.  I have probably said them before, but I just can’t remember at the moment.  One thing that helps is that there is not so much as a hint of wondering about Mary Ann’s secure connection to a wonderful future.  We don’t have the tools to form a picture of it, but we have no need to do so.  Our faith life as a family allows us to relax and accept the gift of a future given freely by a Loving God.  There is no time that we need to spend with any distress about her future.

We have a strong family with no baggage, no unfinished business to complicate the process of letting go.  We accept that we are not perfect.  I have not given Mary Ann perfect care, but there is a forgiving Lord who frees me from that guilt.  Mary Ann has an estranged Brother, whom I have promised to tell that she forgives him.  The result of all that is that we have the privilege of feeling the pain and sadness, celebrating her impending freedom, all with a peace that winds through our grief.  There will be tears, sometimes uncontrollable, but no despair. We don’t have to like it, but will will live through it, hopefully stronger than before, more compassionate, free to live meaningfully no matter what comes next.

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As Bath Aide Zandra was leaving this morning, I caught out of the corner of my eye that she gave Daughter Lisa a lingering hug.  When she left, Lisa said that she was in tears.  Mary Ann has such a presence that it doesn’t take long for her have impact on people.  Zandra has come to help Mary Ann with her shower, wash her hair and get her dressed in the morning twice a week for maybe four years now.  Zandra was absolutely shocked when she came last Wednesday and saw how much Mary Ann had declined in just a week.

It is probably good that I didn’t see it.  I am beginning to feel as if my intentional denial is only a thin veneer.  I am not ready to allow the dull pain to break open.  I suspect that the illusion that I actually have anything much to say about when and where it breaks is only that, an illusion.  Enough of that!

Then there is Freda’s food.  Lisa was putting some clothes in the dryer.  As she walked out of the laundry room, I was standing in the doorway to the kitchen.  The door to the garage was between us.  As I was standing there, I was eating some of the Chicken Tetrazzini that Tamara had brought the other day.  I said to Lisa, “You know, I think we are running out of food.  I need to get to the store and pick up something.”  Lisa said that she certainly could cook something.

Seconds after Lisa finished that sentence, the door to the garage opened between us, and Lisa’s Husband, Denis, who had been sweeping out the garage, said, someone is here with food.  Neighbor Freda walked in with a bucket of beef and noodles, a package of salad, a loaf of bread and a freshly baked chocolate cake, announcing, “I brought supper.”  It’s all in the timing.

Today there was resolution to some minor annoyances that in our circumstances have seemed like adding insult to injury.

On Friday, I got the summons from the County Courthouse to jury duty.  Today, I picked up the note from the doctor excusing me from serving and got the form and the letter ready to put in the mail tomorrow.

There had been a leak at our gas meter we had reported a couple of weeks ago.  I called today to check on when they would come to repair it.  The truck came this afternoon, dug up a section of our new landscaping, and put in a new meter.

Yesterday, the waterfall stopped running.  Today, Brad came, pulled out the pump, covered with calcium deposits, took it with him, and later returned with a new one.  He had to talk long and hard to convince the vendor to honor the three year warranty.  Since Brad’s Dad has also been diagnosed with Parkinson’s, he has always been very good to us.  Actually, what he told the vendor was that he could not bring himself to charge this customer for a new pump and if he had to he would pay for it himself. Brad said he would come back in two or three weeks to add some stone to cover places where the liner is exposed.  He also will search from some bird friendly chemical to keep the calcium from building up again.

Today my mind has wandered a variety of places.  First of all, my gut keeps reminding me just how much I do not like what is happening to Mary Ann.  I won’t try to describe that feeling.  It is too big for words.

As I was driving out to run some errands a couple of thoughts wandered through.  One is how much of a relief it is not to be dealing with decisions on medications, how much to give and when, what to give and what to remove.  There was always the sense of responsibility for Mary Ann’s survival weighing on me, as if that depended on my making the right decisions.  I know I did not have that much power, but it did make a difference what we did and when.  There were good choices and bad choices to be made.  Those choices are no longer mine to make.  In that regard, it feels as if a heavy weight has been lifted from my shoulders, only to be replaced by a heavy pain in my gut.

Then, just for a moment, as I was driving from the Wild Bird place where I got some more peanuts in the shell for the birds favorite feeder to the Barnes and Noble to look for a reading light so that I could be in the bedroom with Mary Ann reading without having to turn on a light that might disturb here — just for a moment, I had a flash of being out running an errand by myself, without have Mary Ann at home to return to.  It was almost more than I could tolerate.  Have I mentioned how much I don’t like this???

On a more positive note, it continues to be a marvel how many people here and in other places are praying for us.  One of the images used by some of the New Testament writers, is that of myriads of people cheering from the stands.  The imagery comes from the sporting events of the time.  We feel as if there are many people cheering us on as we are in the home stretch, winded and in pain, buoyed by the good will of so many.

Mary Ann has seemed very comfortable today.  We were concerned about the possibility of sores starting, but there were only a couple of red spots.  Bath Aide Zandra confirmed that her skin looked very good.  Nurse Emily came by and confirmed that Mary Ann is still not in need of changing to the special bed and mattress.  She also said that Mary Ann is probably much more comfortable in her own bed than she would be in a hospital bed if one was brought in.  We can get one within a couple of hours if it is needed.

Hospice Chaplain Ed came over for a while.  Again, that is more just a chance for two pastors to chew the fat, as they say, than anything else.

Mary Ann did not eat anything today, but she did drink some water.  She has had her eyes closed almost all day.  One eye opened for a bit when the girls (our 5 and 7 year old Granddaughters) sat on my bed next to Mary Ann and read her some books.  Mary Ann said “okay,” when Nurse Emily told her she would be back tomorrow.  When we changed Mary Ann tonight, there was very little redness in a couple of places.

It felt good to see her comfortable today.  Somehow that helps make dull pain more bearable.

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 will she wear, what songs will be sung, what passages read.  We talked about some of those things years ago when we filled out forms for a Pre-need plan at the local funeral home.  The major decisions are already made.

I have to admit that it is painful even to talk about such things.  It was fine to do so many years ago — not now.  I am refusing to allow it to sink in and touch my gut.  The pain is there, but it is an aching now.  I have tasted it enough to know that the pain will sharpen and overwhelm when it breaks open.  Certainly I will survive as have tens of millions before me.

Friends Mike and Judy came over to spend time with us today.  As always it was a good and meaningful time.  Mary Ann connected with their presence and appreciated it.  Since Mike is the Pastor who will preach at the funeral when it comes, we needed to talk some about that.

Later, Pastor Jim, who followed me as Senior Pastor of the congregation I served for a dozen years, came over to celebrate Holy Communion with us.  There were enough of us to feel like a congregation.  Pastor Jim provided a meaningful ministry through a service of Scripture, prayer and song.  With three Pastors, two Spouses of Pastors and one Daughter of a Pastor, we surprised Jim by knowing the words to the songs (multiple stanzas) by heart.  He didn’t have to sing solo.  We were a choir.

One of the songs we sang is “Beautiful Savior.”  Both Mary Ann and I grew up in the same congregation in Aurora, Illinois.  Every Sunday worship through all the years we were growing up ended with “Beautiful Savior.”  As we gathered around Mary Ann’s bed and worshiped, sang and shared the bread and wine of Holy Communion, there was a peace about what is happening.  Mary Ann was a part of it even if she was not able to sing out loud with us.

With that said, as Son Micah commented later when he arrived, “this is hard.”  It hurts.  It just hurts.

Mary Ann seemed to have a comfortable day.  Last night, I was up a few times to listen for her breathing.  I tried to move her a little to minimize the pressure sore problem.  This morning when Lisa and I changed her, she did not show much evidence of the first stage of pressure sores — just one red spot on her ankle.  It was a relief to me that she seemed to fare well last night.  She does not move at all other than a foot moving a bit once in a while.  That is a formula for bedsores.

One happy surprise was that while Lisa and I were rolling Mary Ann this way and that to change her and check her, it just caught our funny bone.  We started laughing and so did Mary Ann.  It was not audible, but had it been, it would have been a belly laugh.

Lisa headed off for church and a local Art Fair.  I read a bit, then started a new book, titled Broken Open, by Elizabeth Lesser.  It is subtitled “How difficult Times Can Help Us Grow.”  How is that for timely.  It was recommended by the online Lewy Body Dementia Spouses group.

I decided to move into the bedroom to read, just so that I could be with Mary Ann.  It was a pleasant experience.  She seemed comfortable.  I asked how she was doing and she responded audibly that she was okay.  We just had some quiet interaction.  I gave her some water.   I realized just how wonderful it is to be able to spend this time in our lives together at home.

Later in the day, Son-in-Law Denis, arrived to provide Lisa with support and help with the girls.  Denis and the girls will be going back to Louisville on Tuesday.  Son, Micah and Granddaughter Chloe arrived at about the same time as Denis.  This was around the time Mike, Judy and Pastor Jim left.

Lisa and I changed Mary Ann again, examined her for red spots and turned her.  It was disappointing to see some red areas, indicating the potential of pressure sores beginning.  I plan to phone the Hospice Nurse tomorrow about the possibility of a hospital bed with the self adjusting air mattress on it to help avoid the worsening of those spots.

One annoying element in the day was the waterfall simply stopping.  It just stopped.  No one did anything to it.  It just stopped.  I was able to get hold of Brad (through his wife since they were driving) who promised to come after his work tomorrow afternoon to work on it.  Brad installed the pondless waterfall.  I certainly realize just how important a role that addition to our home is now that it is not working.  We built the sun room so that we could see the waterfall!

While Mary Ann is, of course, very vulnerable, and anything could happen at any time, she still seems fairly strong.   She ate a small dish of ice cream this afternoon while lying in bed. The Orthostatic hypotension has been so bad that it is pretty much impossible to sit her up for more that a moment.  Her blood pressure drops and so does she.

We continue to take things as they come, grateful for what we have, hoping for a peaceful release when the time comes.

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

The oxygen is now running.  It took the oxygen and only one very small dose of Morphine to relieve the heart pain this morning.  Since then Mary Ann has been in bed 100% of th time.  She did not want to sit up any of the times we asked her today. She seldom moves at all, but just lies still, with her eyes open most of the time.

Daughter Lisa and I changed her while she remained lying in bed.  At this point it is not so much how difficult it is to help her in the bathroom but how hard it is on her for us to drag her around that has led us to that approach.  Each thing in its time.  We now have briefs that tape on the sides.

Mary Ann did take some sips of water at various times.  Earlier today, she ate a single serving container of tapioca.  That has been the sum and substance of her nourishment today.

Words are few and far between and barely audible when they come.  We have given up trying to give her any medicine.  She just can’t/won’t take it.

Daughter Lisa was due to leave tomorrow.  She has decided to stay longer.  Our Son-in-Law Denis will be arriving tomorrow evening.  He will stay a day and then take the girls with him back to Louisville, KY.  Gratefully, he has a huge, very close family there, with lots of Sisters and Nieces waiting in line to help with the girls while he is at work.

Needless to say, I am relieved that she will be here at least for a while as this new reality sets in.  Lisa has been a Certified Nurses’ Assistant [CNA] and later an Administrator of a large multi-level Senior Care complex.  She is checking carefully for any red spots that could develop into pressure sores, making sure her Mom is shifted regularly.

Son Micah opted to come for the day today. He dropped out of a BBQ contest in which he was enrolled to spend the day here.  This is hard on both of the kids.  We are all helpless to do anything about this, so we just hang out together, staying close to Mary Ann.  This could go on for some weeks.  The kids will have the challenge of determining when to be here and when to be taking care of their primary responsibility to their respective families (who are wonderful and understanding).

I was planning on attending a wedding this evening and offering the mealtime prayer at the reception.  In fact, that was one of the reasons Daughter Lisa had planned on returning home on Sunday rather than Saturday, so that she could stay with her Mom, allowing me to be away from the house for the wedding.  When all those plans were made, none of us had a clue about what would be happening.

We  have seen a Guiding Hand in the way things have been playing out.  Mary Ann’s decline came on suddenly only days before Lisa’s scheduled visit.  The girls were scheduled for a sleepover with friends, so they were not here last night to be disturbed by the Hospice Nurse and the oxygen delivery.  When there are huge things that are out of control, it is not unusual to notice little gifts that come along the way.  They are signs that we are not alone in this journey.

Tonight’s wedding was the wedding of Christine and James.  Chrissy will soon be an ordained Pastor.  I have enjoyed watching her grow in her commitment to that service.  On occasion when she was in town, as she began and continued her training, we would talk over coffee.  Those conversations always stretched me intellectually and Spiritually.  She has been in Africa a couple of times trying to make a difference for good.  She has a view of humanity that is not limited by national boundaries or ethnicity.

I didn’t like missing the wedding, but, just as I mentioned in an earlier post when I had to miss Katie and Jacob’s wedding, while they spoke their vows I was doing what they were promising.

Time for some rest.

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