Hospice

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July 20, 2010

Chirp-strafed by a Cluster of Swallows

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

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

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

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

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

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

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

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

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

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

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

 

June 21, 2010

Current Defense — Staying Busy

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , |
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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.

 

June 16, 2010

Shedding Signs of Parkinson’s Presence

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Meaningful Caregiving, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , |
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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 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.

 

June 14, 2010

Her Battle Is Over!

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Meaningful Caregiving, Relationship Issues, Sources of Strength, Uncategorized | Tags: , , , , , , , , , , , |
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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.

 

June 12, 2010

What Happens Right Away?

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , |
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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.

 

June 12, 2010

Family, Food and Flowers

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength | Tags: , , , , , , , , , , , , , , |
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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.

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.

 

June 11, 2010

Cold Feet and Legs Scared Me

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , |
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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.

 

June 9, 2010

Do you know how much I love you? “Yeah.”

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , |
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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.

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.

 

June 8, 2010

“Probably not today, but I could be wrong.”

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength | Tags: , , , , , , , , , , , , , |
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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.

 

June 5, 2010

Heart Pain Returns, Oxygen-Morphine Help

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , |
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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.

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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