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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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.

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.

Warm gel is a good thing when having an echo-cardiogram and a carotid sonogram.  Yesterday was Mary Ann’s every six month check of the lesion in one of her carotid arteries (the ones in the neck that supply the brain with blood), and her every six month check of her heart, the valves and general condition.

The tests happen so regularly since at some time, should the lesion in her carotid artery grow past a certain point, the question of surgery will come up.  She has already had one stroke, probably caused by bits of plaque sloughed off from that lesion.  The most we can hope for is very little change in how much of that artery is blocked.  I will admit that neither Mary Ann nor I am much interested in a major surgery.  We would certainly discuss the option.  I would not presume to know for sure what Mary Ann might want to do if surgery is suggested.  Her Mom had it when she was in her 80’s, and she did very well.

What the echocardiogram shows could have some impact on medications.  It was interesting to watch the med tech do the test.  She had a student with her.  She described what she was looking at to the student as she pulled up each view of Mary Ann’s heart.  I had a great view of the screen during the entire test.  It was helpful to me to hear her point out and name the parts of the heart on the screen.  Having watched the screen for the last few echo-cardiograms, I am getting fairly familiar with the images on the screen.  It helped this time to have a running commentary on what I was seeing.

What was especially interesting was a little mini-drama, as the med tech was describing what she was seeing to the student.  At one point there is color added to the screen.  The red indicates blood coming toward the probe, the blue indicates blood moving away from the probe.  When the med tech was checking the valves using the color mode, her voice lowered as she spoke to the student.  I inferred that the movement of the colors was indicating leaking valves and she did not want to break protocol by revealing that within Mary Ann’s and my hearing.  I had been quiet (unusual for me) until then.  I decided to relieve her distress by mentioning Mary Ann’s problem with leaking heart valves. The med tech’s response indicated my assessment of her reaction had been correct.  Up to this point, the leaking is not severe enough to warrant raising the surgery option.

Both Mary Ann and I had blood tests a week ago.  Her orders came from our GP (thyroid and cholesterol check), mine came from our Cardiologist (cholesterol).  Mary Ann is the one with problems, right?  Her numbers were great!  Mine produced a message from the Cardiologist to double the dosage on my cholesterol lowering med.  Mary Ann’s annoying ability to stop eating when she is full, as well as her distaste for leftovers and much of what I cook, seems to be serving her well in the blood chemistry department.  My inability to stop eating until everything is gone on my plate and all the containers on the table, does not serve me so well in the blood chemistry department.  I suspect a program of improved diet, exercise and weight reduction is in my future — perhaps I should have a snack and lie down until that thought passes.

We got a copy of the written results of our blood work yesterday after the tests were done.  Mary Ann’s results revealed the continuing reduction in her kidney function.  The surface of her kidneys has hardened due to decades of high blood pressure.  If you have read earlier posts about her struggle with Orthostatic Hypotension (low blood pressure when standing, producing fainting spells) you will catch the irony.  She is now taking medicine to raise her base blood pressure to reduce the problem of her BP lowering too much when she is standing and walking.  If I am reading the lab report correctly, she has just moved into stage three of five in her Chronic Kidney Disease. The good news is that we all have so much kidney capacity that it could lower to 30% of full functioning without becoming dangerous. When I include that sort of information, remember that I am not a doctor.  Don’t take my word for it. A few years ago a very candid Nephrologist told us that Mary Ann would likely die with Chronic Kidney Disease, not of it.  At that time we all agreed not to treat the kidney disease since the treatment would make the fainting worse by lowering her blood pressure.

As the tests were going on, I thought about how scary all the test results can be.  When we first were told about each of the problems, there was that feeling in the pit of the stomach that the end might be nearing.  After years of monitoring the results of the tests, it is just more information confirming what we already know.  Even if there is something new, Mary Ann has faced down so many medical problems for so many years, we just take it in stride.  Mary Ann could die in ten minutes, ten months, ten years, or more.  So could I.  Death lives just on the other side of life.  Coming to terms with that provides a sense of peace, and affirms the sweetness of the life we have at any given moment.  Our spiritual foundation steals from death its ultimate power to destroy.  Neither of us longs for it.  We both recognize the pain that is left to those we leave behind.  At the same time, we recognize our mortality and have learned to live with 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.