Pieces of Her Life

I began going through my mother's correspondence yesterday: three crates full of copies of letters she had written and some that had been written to her.

It is dawning on me that my mother may have been what is called "hypergraphic."  It looks like she may have daily documented every detail of her life.  She handwrote pages and pages and pages each day and then transcribed much of this onto her trusty typewriter, and later to her computer.  I remember well her delight at the electric typewriter after years of typing and making carbons on her old manuel one.  Although she never learned the mystery of saving documents on the various computers we bought for her, she also loved the freedom of just printing out two copies of everything she wrote--one to send and one to file (or pile, actually).

Hundreds of the spiral notebooks that she always kept handy and in which she did most of her notetaking have already landed in the recycle bin.  I'm not a careful historian.  She was not some public figure whose and every word, jot and tittle will be memorialized in some public presidential library.  She was ordinary--in her unique and extraordinary way of being ordinary.  

I "googled" her yesterday: "Eileen H. Thomas."  The only places she turns up are in the obituaries that ran last week. Before Google, people used to employ clipping services.  Clipping service employees had the job of reading multiple newspapers and publications each day and cutting out all articles that mentioned a particular person.  The more clippings, the more public recognition. I found a folder of yellowed, but still preserved newspaper articles about her--one of her first jobs as a nurses aide, her honors as a beauty queen, her engagement, her wedding. Now, we just use the Google ranking system.  And she didn't make it.

I know now that I can't keep all these letters.  The organization alone of them will take days.  Ideally, then they would be scanned and electronically preserved.  And then the book written.  

It will not happen.  I am very much my mother's daughter.  This will quickly morph into one of the many projects she herself began and never finished. Then someone else will have to pick up my leavings, just as I am picking up hers. 

Ninety percent of what she wrote is already gone. Now, I'm going to have to get rid of at least 90% of what I held back.  And then maybe 90% of those leavings will still have to go.  

As I awoke this morning--which means I did at least sleep some last night--I meditated on the responsibility of being a steward of the life that God has granted me.  I am not my own--I have been bought with a price.  It then becomes my privilege to hand back this life to God as one well lived and increased in value, not decreased.

I found some release from my sadness in the thought of being a faithful steward of the time left to me in this physical body. Part of faithfulness is knowing what to keep and what to let go.  It means holding what I have with open hands, surrounding my decisions with prayer, and knowing that my life, too, will end someday.  I want to hear, "Well done, Christy!" when I come face to face with God.

Is my mother hearing those words?  It is a question to ponder.  As much as she wrote about her Bible and Sunday School lessons, I have not seen where she was able to articulate well her own theology and understanding of God.  I'm not sure that she ever really grasped grace, that gift of forgiveness and reconciliation, incarnated in the life, death and resurrection of Jesus, that is freely poured out upon us, should we choose to receive it.  Nonetheless, with all her eccentricities and idiosyncrasies (and I use those same terms to describe myself), with the fears that often bound her and the stubbornness that used to infuriate those around her, with her geniuses and her generosities, she lived loving God and her neighbor with as much of her self as she was able to access.  

I know that as I pick my way through her papers, and read yet another letter lovingly detailing pieces of my life that I had long forgotten, I say, "Well done, Mother!  You lived as a faithful steward of the gifts God gave you.  Thanks." 

Is Ignorance Bliss?

Is it better just not to know?  To live in ignorance of basic facts?  To naively let others make decisions for you? 

As I continue to let the surprisingly paralyzing grief of my mother's death work its way through my soul, I sit and wait and read and think and pray. I also ponder the latest religious scandal to hit the news:  An Atlanta pastor who has given himself the title of Bishop, Eddie Long, has been accused of participating in the very acts he has frequently preached against, i.e., male-on-male sexual activity.  Four young men whom he had mentored have filed lawsuits against him now, claiming he engaged in such activities with them.  

This man has built a huge church.  He lives in significant luxury, driving a $350,000 car. He's invited into the highest places of political power. According to a National Public Radio article, Long preaches that Jesus was not poor, and that riches show God's blessing. He was quoted as saying this: 

"We're not just a church; we're an international corporation," he said. "We're not just a bumbling bunch of preachers who can't talk and all we're doing is baptizing babies. I deal with the White House. I deal with Tony Blair. I deal with presidents around the world. I pastor a multimillion-dollar congregation."

Yeah. Wow. The seduction of riches and power wins again. What an eloquent putdown of pastoral work!  In the act of baptizing a baby, we bumbling bunches of preachers, lacking Long's silver-plated tongue, stand before our often poverty-hit parishioners and remind them that God's covenant extends even to the most humble, helpless babies.  We speak of our commitment to each other to help raise those children in such a way that they grow up knowing they are surrounded by the love of God.  We make these promises so that when these children do grow up, they have the kingdom of God so integrated into their hearts and minds and habits and personalities that they will at some point be able to confirm for themselves the faith that had been handed down to them by their parents and their faith community.  

That's the work of the church.  The church is not called to be an "international corporation."  The church has one mission:  to make disciples of Jesus Christ.  A disciple is one who models his or her life on the the life of the Sent One, the one coming from God to show us the way.  And I dare you to show me anywhere in the life, teachings, death and resurrection of Jesus that such a way is one of self-absorbed riches, comfort, political power, and disdain for the least, the littlest, the lost and the last.  

This is where I come back to the question of ignorance.  Without knowing the basics about the life and teachings of Jesus, people are easily seduced by the false promise of riches that power-hungry leaders offer.  So they pour money into the bloated pockets of predatory preachers in the vain hope that they themselves might get a share of the money train.  

Jesus was not rich.  He died in poverty.  He reminded people that foxes have holes, and birds have nests, but he himself didn't have a place to lay his head.  Knowing the trap of riches, he told a rich young man that he needed to sell everything he had in order to enter the kingdom of heaven.  And the life, death and resurrection of this obscure, poor itinerant preacher changed the world.  

You really want to follow Jesus?  Start reading the Bible for yourself.  Quit expecting some magical charismatic person to wave the magic wand and stuff your pockets with money so you can stuff your backside into a luxury car.  There are real, everlasting riches to be had:  riches of redeemed souls, being set free to live, forgiven by God, and forgiving of others.  That is wealth.

Stunned, Numb, Sleepless, Tearless

I am simply shocked at my current state.  After the memorial service for my mother on Friday, a friend from high school came up to greet me. I was touched at his willingness to spend time attending this service, and to be there, as he put it, simply to support me.  He asked, "How ARE you doing?"  And I quickly said truth:  "Not well at all."

I am not doing well, whatever well is.  I spent some time with my oldest son and his wife over the weekend.  They also saw it.  I can't think well.  I'm barely coherent--if that.  

I'm not back at work.  Even simple decisions throw me.  Right now, I need some breakfast, and can't seem to make it to the kitchen to fix something.  

There are tasks everywhere that, should I do them, would leave me feeling better afterward.  It's just the getting up and doing them that seems so impossible right now.

Even in this fuddled, muddled state, I'm aware that all these are signs of depression. What I don't want to do is rush out and "fix" this depression with medication.  I think it is important that I explore this.  I need to find out what has happened here, why I am so thrown by this, and in the exploration, find a deeper healing, both for me and also a healing that might help others who are walking with me and reading about it.

Death just is.  We all experience it.  There is not one soul in this entire world that will not at some point be touched by loss and death.  It is our commonality.

However, I think for me there are two big things going on here that have made this particular death more devastating.  

The first was the fact that I spent so much time with my mother in the five weeks between the huge series of strokes that originally felled her on August 13, and her death on September 18.  I was never able to get off the roller coaster where I was being yanked back and forth from hope to despair.  All this was compounded by lack of sleep, and by the recognition that I did have medical power of attorney and did have to make decisions about this that were indeed life and death decisions and those decisions were made with a major lack of a more comprehensive understanding of how much damage the strokes did cause.

In the two weeks that we had her home under hospice care, I spent part of every day but two with her, and did not leave at all for the last five days.  I watched her die, inch by inch.  I saw the essence of her just disappear.  I have sat by the bedside of many, many dying people over the years, and especially in this last year.  I've grieved with their families.  Those experiences served me well, and gave me some strength to do what was important for my mother.  But they also mean that I walked into my own situation with a short supply of energy and emotional resources. I walked out completely empty.  That is indeed the first big thing.

But the second big thing I think is much more important.  I suddenly feel anchorless. I don't mean in the eternal, cosmic sense.  I am more aware than ever of the abiding presence of God.  I don't need to cling to that.  It clings to me.  I am in no sense abandoned.  But I have lost my anchor to place.  My mother and dad are both dead now.  My children have all moved far, far away.  Bonds to place, to geography, to a house built by my parents where family activities for that last 25 years all happened have snapped like aged and overstretched rubber bands.  

I personally don't own a house.  Since Keith and I married 12 years ago, we've lived in five different places, parsonages owned by churches, or in a townhouse we rented when a parsonage was not available.  I really, really enjoy living in Krum.  But I'm part of an itinerant clergy covenant.  I'm a sojourner here, serving at the wish and under the appointment of a Bishop.  The tenuous nature of my ties here hit me hard right now.

I told a friend yesterday that I feel like I'm floating in a hot air balloon with no idea where I'm going or how I'm going to land it again.  I have this sense that I want to toss out everything I own, divest myself of stuff and possessions, and ride the wind for a while.

But even when riding the wind, I need to eat.  I shall do that.  Now. I hope.

Morning of the Memorial Service

We'll be leaving for the memorial service for my mother shortly. It's a warm, gray, rainy, humid day, guaranteed to make my hair frizz and get out of control.  Sigh--teen angst never really fully leaves, does it?

I did sleep some last night, but continually have dreams of my mother.  Not bad ones--she's clearly at peace.  Just dreams.  Dreams of her as a young woman, dreams of her dreams.

I continue to be shocked at how numb I am and for my sadness.  As hard as the last six weeks have been, she only actually had five weeks of incapacity in her entire life and those were her last five weeks of life.  And I only had five weeks of non-stop hospital/rehab/hospice days to deal with.  

People keep suggesting I take more time off.  I keep thinking I need to get back to work.  I'm beginning to think they know more than I do about this.  

And it would be good to just clean my house, go ahead and dismantle the totally neglected garden for fall, to put in some fall flowers, to take care of a few more things at Mother's house, and to sleep.  Just sleep.  

But I'll not make a decision about this until Sunday.  I just need to honor this day, and be grateful for many, many good memories.

The Cards, Notes, Calls and Emails

I woke this morning thinking perhaps I could get at least a few hours of catch-up work done, but still have not managed to get going other than washing my hair.  At least it was something.  

But, to give myself some credit, I have opened the mail, read email, and enjoyed the sweet cards and messages made for me by the children and youth of the church.

Everything I opened and read brought a smile to my face.  What kindness and love!  

Several weeks ago, shortly after the massive stroke that eventually took my mother's life, I preached about the importance of community while recognizing that some things we must do alone.  Each of us has to die on our own--no one can do our dying for us.  But we can be accompanied by others on the way.  

And each of us has to grieve on our own.  No one can do our grieving for us.  But we can welcome the companionship of others on the way.

I'm especially aware of that essential aloneness as I prepare myself for the memorial service on Friday and also prepare myself to go back to my work life, which I have missed so much.  I feel sure that my tears, which have been further away in the last few days, will start to roll again.  Not because the sadness is worse, but because I will be touched even deeper by the power of other human beings to empathize and care for others, even as we have to walk our own journey.

Many have asked me, "What can I do?"  I know I've asked the same question of others who are going through dark and scary times.  "What can I do?"  Unfortunately, there is actually quite little.  Some household tasks have been neglected, but we will catch up on these at some point, and they are really no big deal.  We've plenty of food, so all that is covered.  No one can write my thank-you notes for me, or sort out my tangled finances for me, or go through my mother's things for me.  No one can think my thoughts for me, or take the place of my mother for me.

What can we do for others at these times?  I've realized that sometimes I just need to talk.  So, we can all listen.  Sometimes I just need to be alone.  So we can all celebrate solitude.  Sometimes I need to know that someone really does love me. And that is where the cards, the notes, the messages, the emails all add up into a solid scaffolding of love and compassion.  The hands and feet of Jesus, so to speak.

I continue to be aware of how very, very fortunate I am.  The loss of a parent, especially an elderly one, is a normal and expected part of life.  She didn't suffer long; I was able to be with her most of the time at the end.  That's about as good as it gets.

There are those whose losses are so great that my grief looks like a speck of dust compared to their mountains of anguish.  I particularly think of those who have lost a child to illness or accident.  All of us should expect to bury our parents.  None of us ever wants to bury our own children.  When faced with that kind of open wound of grief, everyone with any compassion within them says, "What can I do?  How I wish I could help!"  You can.  Prayers really do help.  A lot.  And so do the cards, notes, calls and emails.  They can't take away the sadness, but they do help us to realize that in our aloneness, we are most definitely not alone.

Thank you.

Fatigue and Darkness

I feel the fatigue today. Darkness of soul settles around me.  The slightest movement seems more than I can manage.  Simple decisions morph into complex challenges.  I'm irritable, restless, and starting to get concerned about the amount of work I've just left behind for the time being.

In other words, I'm normal.  This is what happens in the wake of loss.  I have this longing for my usual routine, for some time in my garden (pretty well gone from the necessary neglect of the last few weeks), to sit at my desk, to be studying the Scriptures, preparing to create a message, to be with my church members, to hear the children's voices at our Children's Day Out program, to participate in the organized chaos of the Midweek Miracle, our Wednesday night ministry for children. But even if I could do those things, I wouldn't have the energy to focus on them or enjoy them.

I'm also busy pondering the whole issue of stuff.  Stuff.  The things that fill our living spaces, cars, pocketbooks and briefcases, computers and phones, lockers and rented containers, mind and souls.  Stuff.  I've got it; you've got it; we've all got it.  And my mother had it.

When Daddy died, we had given his closetful of clothes to the woman who, along with her team, has faithfully and carefully cleaned my parent's house for a number of years. She said she knew some people who could use them and we were pleased at the thought that those clothes would see new life elsewhere. I had thought to give her some of Mother's stuff, but then my sister heard that the housekeeper was a hoarder herself.  That she just piled stuff given to her by her clients into her overstuffed house.  As in the kind of place they make TV shows about these days.  Hoarders.  People so trapped by their stuff that they destroy themselves and those around them in the compulsive need to get more stuff and relinquish nothing.

So, Mother's clothes went to Special Touch in Krum where I know they'll be well-distributed.  But, of course, clothes are just the tip of the iceberg, as they are for most of us.  There are so many other things we use for daily living, and so many other thing we just have.  Stuff.  

My Mother had too many books.  I have too many books.  My mother had too many files.  I have too many files (but mine are just more compact because they are on my computer:  but it doesn't mean I don't have them).  My mother had too many clothes.  I've got too many clothes. How much does it take for someone to be appropriately clothed, anyway?  Not that much.  Really.

So, while it is easy in my fatigued, irritable, overwhelmed state to think, "Mother, how could you leave me with all this to clean up," it might be better for me to think, "Why do I have so much stuff?  What good does it do?  What harm does it do?  What is really important?"

My biggest fear right now:  that the emotional numbness that follows a death is going to wear off before I can get through this week and I'm just going to collapse. That I'm not going to be able to sort through enough of the stuff to gain some sense of control over my life.  That I'm just going to have to start sitting and letting the sadness flow.  

I already miss her.

On the Other Side of the Desk

Yesterday, it fell to me to meet with the pastor of Mother's church and plan the memorial service which will be this Friday at 1:00 p.m. at East Dallas Christian Church in Dallas.  Although Keith and I have already buried three of our parents, for the other three times, we ourselves conducted the memorial services.  But for this one, the two of us will be family, not clergy.

It felt odd.  Normally, I'm the one asking, taking notes, learning more about this person, considering possible Scriptures, looking for the wholeness of the service.  Yesterday, this was all beautifully handled by Deborah Morgan.  We certainly worked together, agreed quickly on the Scriptures to be read, and pondered music options together.  I looked through an unfamiliar hymnbook, and also my mother's Sunday School class songbook, where I knew her favorite songs were.

We both agreed on the difficulty of actually singing "How Great Thou Art," although it is a beautiful piece of music.  I commented on the fact that the Disciples of Christ had not yet picked up the lovely, "Hymn of Promise," which has quickly taken a well-deserved place at funerals and memorial services.

Then we started talking about my mother, her life and heritage, her accomplishments, her generosity, her individuality, and some of the really funny stories about her.  There was the traffic ticket she received last January on the way to church (60 in a 40, and by the time Mother actually pulled over, there were four police cars trailing her!).  Then there were the infamous "Grandma's Shortcuts."  She felt strongly that no one should ever, ever drive on a freeway and was always offering to us creative ways to get places along side streets that would invariably take three times longer than the more normal way.

It was a good hour.  More, I left grateful that for this one service, I could just be.  I need that.

I returned to Mother's house and spent a couple more hours cleaning out some things as we will be having an open house for anyone who wants to join us there later Friday afternoon.  This will be a time for relaxed conversation, libations and toasts, memories and laughter, following the service and reception at the church.

I was deeply relieved when I got there to see that the hospital bed and all the other equipment we had needed at the end of her life had been removed.  That empty bed had been a difficult reminder of those challenging last few days, and it was good to have all that gone.  

My brother left in the late afternoon to take care of some computer problems at my sister's house.  My sister and I sat on the patio for a while later talking about the details of Friday and what all we need to do to get ready for it.  And then she left.  I sat there for quite a while longer.  In the twenty five years since my parents built that house, and in all the many hours, days and weeks I've spent there, this was the first time I'd ever been alone in that place.  

Although I was not lonely, I was suddenly very aware of my aloneness.  Her presence was such a constant in my life--I always knew I'd find her when I wanted her.  And she was gone.  I wandered through the house as I was getting ready to leave, turning out lights, swimming on a tide of memories.  I locked the front door when I left.  That was the first time I had ever done that upon leaving their house.  

I am grateful for the numbness that pretty well encapsulates my emotional life right now. To have felt it all yesterday would have been way, way too much.  There was just enough to acknowledge my sadness, but not so much that I could not function, or make the long drive home.  It was a great gift from God and from the prayers of the many who have offered them for me.

Today, I take her clothes to the local clothes closet and trust this act will be a continuation of my mother's never-ending generous life.  What a great legacy!

What Would I Have Done Differently, Part One

Mother has been gone about 20 hours now.  I would have liked to have slept about 19 of those twenty, but that has not been my privilege yet.  My body and brain are wired--a combination of grief, relief, questions and an exhaustion that won't yet permit sleep.

So, since I can't sleep, I may as well write.  

The question racing through my brain right now:  What would I have done differently if I had known then what I know now?

A lot.

The number one non-negotiable thing is this:  I would have absolutely insisted on much, much more information than I ever received about the extent of the damage of my mother's initial stroke on August 13, 2010 (actually series of strokes, but we didn't learn even this much until well into the process.) Neurologists can tell a great deal about what has been damaged by the areas of the brain affected by the stroke.  And I received only sketchy information about this, and nothing in written form.

As I look back on that initial hospitalization at Medical City Dallas, I see myself wandering in a fog of too little information; of one physician not talking to another physician; of no real coordination of care.  At one point, I requested a patient advocate. No one ever showed up.  Shame on me for not pursuing this more aggressively. Shame on them for expecting people who are thrown into a highly confusing experience with minimal information coming our way to expect to know what questions to ask and where to get those answers.  

It is difficult to make good decisions without an adequate knowledge base.  Only knowing that "some people can recover well from such a large stroke" was just not nearly enough. Yes, some people can and do, thanks be to God.  But are they 88 year old sedentary women with a years-long history of untreated high blood pressure and a heart that goes in and out of a-fib all the time?  Not to mention a woman who had written express medical directives in such a case--directives that were being routinely ignored?  

So, what else would I have done differently?  I would have made sure I had essentially memorized my mother's directives and would have asked to sit down with someone to talk them through rather than hurriedly signing a consent to treat in the Emergency Room.

Would this have delayed life-saving treatment?  Not in her case.  There is only a very short window of time in which clot busting drugs can be administered after a stroke and she had long since passed that window.  She actually received no treatment at all for the first 48 hours except for someone checking her vital signs every hour and a sugar water drip.  There would have been plenty of time to have considered all options.

I am not beating myself up over this.  All this is a learning experience.  It is more my hope that someone else will learn from this and that we all find ways to more effectively handle our health, life and death issues.

So, I'll just keep writing, keep thinking about all this, and see where this goes.

Thank you for all the prayers and words of support.  Despite the exhaustion, I am very aware that this has been a holy experience, and I was immensely privileged to walk with my mother as she opened her eyes at the very end and welcomed the coming of the angels.

The Uncovering

Just over four years ago, in June, 2006, I moved to Krum to be pastor of Krum UMC.  That fall, September, 2006, my husband, Keith, buried his mother.  Just five weeks later, his father died.  One year after that, my dad died.  Last night, at 9:50 p.m., my mother joined that great cloud of witnesses.

Keith and I were fortunate. We had our parents around until we ourselves were pretty well advanced in years.  Yet, both of us felt this sense of uncovering as we said our final good-byes.  We are now the oldest ones.  There is no one left to parent us, to offer that particular kind of loving, knowing wisdom.

We should now be the purveyers of wisdom. We should be the ones who have something of significance to offer those behind us. But I am asking the questions that I would guess our parents also asked:  is anyone willing to listen?

Seriously, is any generation willing to listen to the one before them?  Don't we all think we can do it better than they did?

Technological changes clearly have altered our communication and vocational landscapes, but have they have altered the wisdom necessary to live one's life well?  Have we, as human beings, fundamentally changed?  Do we not still need redeeming? Do we not still need an awareness of the need for grace in our lives as we recognize that most of us must be forgiven much?  Do we not need the power of the presence of God to transform us, so we might be transformational agents to those around us and to the world that so greatly needs it?

At 1:15 a.m. this morning, two lovely and kind women from the Dallas Country Medical Examiners office came to my mother's house to pick up her body.  My mother, generous to the end, knew that the unusual way she had dealt with her health would make her a very, very good subject for some lucky medical student.  The two women who came for her were awed at two things in particular:  first, my mother's beauty.  When the challenge of still trying to breathe finally ended, and she fully relaxed in the arms of Jesus, the physical shell left behind was also transformed into exquisite loveliness.  Second: the choices my mother had made health-wise that are going to be such a gift to the medical world.  They don't get many like her. 

I learned so much from her, and much of that were things I didn't want to learn from her.  In our disagreements, I began to understand myself better.  In her death, I've discovered more than ever who I am, and what I have to offer to the world.

So, I am now the oldest generation.  As such, I carry a holy responsibility to live with grace, wisdom and power that does everything possible to give these gifts to those coming after me, whether they want to receive them or not.  

As for me right at this moment:  I am tired, but at peace.  I did what I needed to do these last long few weeks since her catastrophic stroke on August 13, 2010.  So did the rest of her family, and this was a wonderful, final gift to her, a holy act.

I just heard from a member of my church--his dad has just died unexpectedly.  I had buried his mother last spring.  I will be going back to work sooner than expected, but that is OK.  Mother would have done the same.  Thanks be to God.

The Suction Machine and I, Day Fifteen of Hospice

Very rough four hours.  As would be right for my mother, since she didn't live normally, she also can't die normally.  Late this afternoon, she began to regurgitate something.  I think.  It all started just about the time we had a three hour period when, for complex scheduling reasons, we would not have a hospice caregiver with us.

By the grace of God, just as that period was beginning, and just as things were clearly getting very complex for Mother, one of my favorite Hospice nurses, Wanda, showed up to check on the situation.  She took stock of what was happening, made multiple phone calls, including an urgent request for a suction machine, and said, "I'm staying until your night nurse gets here."

Wanda and I are about the same age, and I had liked her immediately when I met her the day after Mother came home under Hospice care.  Mature, kind, knowledgable and wise:  about as good as it gets.  

Between the two of us, some medication was given, and we worked diligently to keep these increasing, and increasingly nasty, secretions from choking mother.  Then Wanda got a call that she was needed elsewhere, so she arranged for a social worker to at least stay with us in the interim until our night nurse showed up.  That left me as the chief secretion reliever person.  I, with my weak stomach, was charged with removing as much as i could of this constant flow of something of out of mother's mouth with only a little sponge stick for a tool. 

As Wanda left the house, I "girded my loins" so to speak, and told myself that I could do this. Just a moment later, Wanda raced back in with the suction machine she had ordered.  The truck had driven up just as she was driving off, so she turned back.  She quickly set up the machine, gave me a crash course on using it, and then took off again.

So, with the social worker on the other side of the bed for moral support, I became the suctioning queen, knowing this was far more effective than what I had been doing earlier to relieve my mother's discomfort.  The two of us talked about the whole death process and how she came into this work as I periodically pulled that nasty stuff from my mother's mouth and throat.

About an hour later, Suerae, night nurse and essentially the new member of the family, came in and I happily turned over to her my responsibilities and headed to the patio. I needed a few minutes to recoup with a glass of wine with the dark, nighttime quiet around me.

I'm a mother.  I spent my hours, weak stomach and all, dealing with the yucky part of rearing children.  I did it out of love for them.  I did what I did this evening out of love for my mother.  Someone will have to do this for me some day.  This is the part of living and dying we don't often talk about.  Parts of this are just messy.

I often say that as a pastor, I also see the messy parts of people's lives.  I get invited into those festering wounds of heart and soul that threaten to take over if they are not carefully cleaned and healed.  

I also know God is no stranger to the messy, smelly, uncomfortable parts of my life.  Everyone has them.  It's part of our human experience.  I trust God does not shrink from the need to wade into those parts and offer suction when needed, as God accompanies me on my own journey through life.

Wanda said that Mother is very, very near the end.  I'm not sure why she has not yet given up, but she hasn't. Perhaps because there was yet one more thing she needed to teach me.  I'm glad I had the opportunity to learn it.

The Clothes Horse, Day Fifteen of Hospice

My brother, sister and I have all agreed that sitting around looking at each other just waiting for Mother to pass is not the best of ideas during these days.  Keeping busy as much as possible helps all of us.  

So, my sister and I hit my mother's clothes closets today.  If you have been reading this blog from the beginning, you may have learned that my mom was a bit of a packrat.  In truth, it has been my very much unappreciated job since I was about 12 years old to come through periodically and ream through her stuff, tossing tons of it.  This was an uneasy experience for both of us.

Just over three years ago, I cleaned out my dad's stuff before his death but after the time he went into a nursing facility for what I knew would be the last time.  He, like my mother, was buried in papers.  Neither of them ever seemed to be able to prioritize what papers should be kept and what should be tossed or recycled.  

Two years ago, I did a major clean out before my middle son's family spent a week here, since their toddler would be here and was at the age when she would and did get into anything.  At that point, I tackled mostly the kitchen since that would be the area of most danger for her.  

Had I not done those two fairly recent clean-outs, what we are facing now would be far, far worse.  

Walking into the house, one would never think Mother had pack-rat tendencies.  This large and spacious house also was designed with massive storage space.  The problem with massive storage space is that massive amounts of things get stored, hidden, lost, and buried.

I'm coming more and more to the conclusion that we were all better off when our closets were small and few.

My sister had told me that she couldn't find any of mother's comfortable pull-on slacks when we moved her to the short stay in rehab.  We were both puzzled about this as we know there were a good supply of them.

Well, we found them.  Dozens of pairs of them.  And lots more things besides.  Piece by piece, we removed everything from her closet.  Most of it will go to Special Touch in Krum, the local organization there that provides food and clothing to those who have need of it in area where I live.  But a few things are most definitely keepers, either for me or for my sister.

Like most women, my mother regularly changed sizes, so we found a large range of differently sized clothes.  In the last few years, she had taken to wearing just a few favorite things (I understand this:  I do the same.  Ever so much easier!).  But as far as I can see, she had not cleaned anything out of her closet in the entire 25 years that they lived here.  Twenty-five years is a long time to go without cleaning out a closet.

She had some simply gorgeous clothes.  I was so used to seeing her in the everyday stuff, and it had been years since she had really done much socially, that I had forgotten how exquisitely glamorous she could look.  I bet she forgot about them too.  We had such fun today going through all this, and remembering those days of high heels and glittery costumes.  

Good memories for this special woman.

Mother is now deep, deep, deep into that final coma.  Very peaceful.  No need for any medications at all.  Just sleep.  Her temperature is beginning to rise, and I hear the signs of the end stage breathing now.  I've not been home since Tuesday and will not leave here until all is over.  But it is OK.  It's exactly where I need to be.

Golfers, Day Fourteen of Hospice

Mother still breathes, and still moves steadily toward the end of her life, but at her own pace.  That makes sense, as she most definitely lived her life at her own pace, which, for the most part, was at high speed.

My parent's house sits on a golf course in Richardson.  They had built it 25 years ago when it was time for them to move out of their aging house in Lakewood and get into something more convenient and also closer to my sister and me and their grandchildren.

Mother really did design this house, and it is built so the outside pours in everywhere. All of the hospice care-givers have mentioned how much they've enjoyed it, as we have situated her bed in front of a window with an expansive and enjoyable view.  And, periodically, all of us head to the back porch to sit and relax a bit and watch the golfers.  

That's what especially hit me this morning.  No one knows what kinds of stories are being played out behind the closed doors of any house.  In this house, of course, we are lovingly waiting for our mother to move from glory to glory.  In others, marriages heal and break and heal again, children are reared and loved and yelled at, people get up and go to work, or get up and despairingly long for work.  

And some people get out on the golf course for some fresh air, building of skills, friendship . . . and of course frustration (we've seen some pretty awful golfers!).  

The point is:  life goes on, even in the midst of death. It must, and it is such a good thing.  My life may have temporarily come to a standstill, but God is alive and active and in the work of redeeming all things. Births are still taking place and people are falling in love and playing games and slamming their golf clubs down (honestly: I looked out the window just as I wrote this and saw someone do that!), and joy still fills the soul.  For this, I am grateful.

Storm Coming, Day Thirteen of Hospice

Mother's breathing has changed dramatically from this morning.  The Hospice nurse came by around noon and confirmed what I had already surmised: the end is coming quickly for her.  There is no longer even a hint of consciousness, nor of pain or discomfort.  Just air going in and out of her lungs until her heart finally gives out from the effort.

I've pushed feelings far from me.  I am almost numb.  No emotions that I can describe.  Just a patient waiting.

My brother and sister went out to look at a computer possibility for my sister's husband.  I thought it was a good idea. No sense in sitting around here just staring at one another.

A few minutes ago, thunder starting rumbling, and now rain is falling.

I remember the day, now over two weeks ago now, that we finally decided to stop the medical intervention and move mother to hospice care.  It had been an emotionally exhausting day, full of self-doubt and second-guessing, yet still knowing we were doing the right thing.

I left the hospital and drove to the skilled nursing center where she had been for eight days, and retrieved her clothes and other personal items we had brought there.

After letting myself into my mother's house, and bringing everything in, I prepared to head back home.  As I left, a storm coming that day suddenly cleared and I saw the most glorious double rainbow I had ever seen.  I stopped the car and just looked at it.  It was such a gift to me to see that sign of God's promises in the sky.  

I wonder now if this storm will blow in the angels that will take her home. 

Aloneness, Day Fourteen of Hospice

I dawned on me early this morning after another restless night how very, very alone my mother was during the final days before her own mother's death.  I found her account of it last night and posted part of it here.  From the Tuesday night stroke until the Friday afternoon frantic phone calls, she went through this absolutely alone.

I assume my dad was out of town.  He had not yet retired, and traveled extensively for his work.  She clearly did not phone either me or my sister so neither of us knew what was happening.  I know I was ill, and was also caring for a two year old and a six month old, so my hands were full.  My sister was busy with career challenges, and I'm betting mother thought the same thing about both of us:  she didn't want to pull us away from our activities to help her.  My brother had long since moved to California and although there was much friendly and warm correspondence between his wife and my mother, she would not have called on them for help either.

She also didn't phone friends, neighbors, or her church until that last day. As I reflect on her life, I become more aware of her need to be very much independent of others.  

My mother kept a gigantic part of herself deeply hidden.  I remember asking her a couple of years ago what she wanted to eat, as my husband and I were planning a special family gathering and wanted very much for her wishes to be honored.  It took me twenty minutes of patient (and probably not so patient) questioning before she could even mention offer a special food request that was unique to her.  It was always, "I know that so and so likes this, and you like that" type of answer.  I kept asking, "But what you YOU want?"  I'm not sure she really knew--she'd spent much of her life trying to figure out what everyone else wanted and in the process may have lost touch with her own preferences.

I've barely started to read her letters, but it is already clear that they are primarily about others.  Only rarely does she write of her own experiences, her own feelings, and how what happened around her affected her.

There's a powerful strength in this.  There is also a unique aloneness in this determination to keep people distanced emotionally.  And perhaps to keep own emotions distant from herself as well.  

Yesterday, I wrote a draft of her obituary.  I sought to capture her life in the confines of a short newspaper column.  In the writing, I realized again how little I really knew her in the most intimate sense of the word.  

I think the most basic of all human needs is to be both fully known and fully loved.  I also know that few of us are actually willing to be fully known because we live with the fear that says, "If you really did know me, you could not possibly love me."  So, we choose protection and invulnerability in activity, in accomplishments and addictions, in distractions, in work and hobbies, in anything that will keep our surfaces somewhat intact so the swirling chaos underneath can stay hidden.

To some degree, this will protect us from the pain of vulnerability.  But at some point, each of us will indeed die. And then someone will go through all our stuff.  That stuff, or perhaps even lack of stuff, alone reveals so much.  I'm just pondering how much we miss of real life and supportive relationships by this need to hide our true selves.  

As I write this blog, detailing my own experience of walking through this valley of the shadow of death, I have sought vulnerability.  I'm touched to tears by the comments I'm getting in return, mostly by email.  I also admit my own fears at so revealing my intimate and personal thoughts here.  It's easier to stay hidden, covered, protected, invulnerable.  But it is my prayer that my own journey here will at some point help others.  

So, I take yet one more deep breath, and keep going.

And, speaking of breathing, Mother passed a very, very peaceful night, thank goodness.  She continues in her deep sleep, almost completely unable to be roused at all now (she had about two minutes of a slightly awake state after her bath yesterday).  The supplemental oxygen and the frequent administration of morphine continue to relieve the worst of the sleep apnea, but I also noticed that she is perceptibly slowing her breathing pattern again now.  She takes a breath, and then waits four seconds before starting the next one.  I assume those four seconds will turn to six and eight and even longer over the next few hours and days.  I keep remembering that her mother died at 5:30 on a Friday, and wonder what will happen at 5:30 today.

My Mother, My Grandmother, Day Thirteen of Hospice

Early this evening I realized that tomorrow is trash/recycle day here in Richardson, so decided to clean out a few more cabinets and shelves to take advantage of a chance to get more things out of the house and garage.

Old telephone books: out they go.  Piles of spiral notebooks that mother used for her unending to do lists: into the blue bags.  Another dozen notebooks in which she scribbled notes for her Sunday school articles and rough drafts for the letters that were later carefully typed for mailing (with carbons made and then filed in her own unique and, to me, unfathomable, system):  yet another blue bag filled and tied off.

I dragged the big step ladder into the kitchen and attacked some high and yet unexplored cabinets.  Suppressing a sigh of frustration, I brought down a laundry basket stuffed with yet more papers stuck in plastic bags.  Old plastic bags;  very old paper.  Here was a report card from my father's elementary school years--sometime in the 1920's.  Some yellowed newspaper clippings preserved words of his increasingly distinguished career in the life insurance industry.  And another manila folder marked "F" for "File."

I opened it, expecting to trash the contents as I had so many of these folders, and I saw a letter.  Since I'm keeping all correspondence with the dream of someday creating a family history, I stopped to read.

It was an account of my grandmother's death.  

My grandmother, "Granny" as the entire world knew her, moved in with my parents in 1953 and lived with them until her death in 1979.

Here are snippets of the letter, written on a Saturday, the day after Granny's death.

"Mother passed away yesterday afternoon about 5:30 p.m. after steadily going downhill each day since the apparent stroke she had on Tuesday evening. . . . Yesterday was a day in which I feel divine inspiration guided us through some fearful hours.  Mother seemed suddenly to be deteriorating before my very eyes.  [After my mother was unable to reach the doctor] I called the church office, sobbing and asked them to send one of the ministers over. . . . What a blessed feeling it was to have him there as we clasped hands and prayed together in search for God's will and help, particularly in knowing how best to care for her.

About 4:00 p.m., she rang her little bell, indicating by motion that she wanted to lie down on the bed I had made up for her in the sunroom. This last move to the bed was a difficult one which exhausted us both.  She was so weak she could no longer stand up so I could maneuver her into the wheel chair.  It seemed that all of her bodily functions were wearing out at the same time, her heart, bladder control, etc. 

About 5:00 p.m. I checked on her and she seemed to be slipping into a coma, so I bathed her face and head and massaged her back and neck and she closed her eyes and seemed to relax.  About 5:30 p.m., I checked her again and she seemed to be asleep but I could find no pulse. 

[After calling her church, a friend and the paramedic unit]  . . . Christy had been ill with an ear infection so I tried to spare her but asked her to reach her husband for me.  She immediately knew that Gran was gone.  She had had a dream last Friday night and knew then that Gran was soon to go so she was prepared, so they all got out here soon. . . . Still no one could reach the doctor, so there was nothing to do but send for the ambulance from Parkland since she would have to be examined by someone from the coroner's office. . . .On Tuesday afternoon, I had taken Gran for a drive around White Rock Lake to see the redbud and cherry trees in bloom, the forsythia, the pansies, and she enjoyed it but by the time we had finished she was shaking all over with chills and that is when I brought her home and covered her with blankets.  About two hours later, I heard a loud thump upstairs and when I went up she was not in bed, but I found her on the floor unconscious and burning up with fever.  For about 30 minutes I worked frantically, bathing her with wet wash clothes and massaging her back and neck and arms and legs and she finally came around and I gave her a pen and paper so she could write answers to my questions.  I am certain now that if I had not heard that noise she would have passed on Tuesday evening, because the next morning she had a bump on her head and bruise on her shoulder but she had no memory at all of falling."

This is eerily similar to my mother's situation, with my mother about the same age I am now when this happened to Granny, except mother's death is being more drawn out because of medical intervention after her first stroke.  But I have been remembering how Granny died, and had vowed a long time ago that I would try to do for my mother what she had done for her own:  give her a chance to pass from this life to the next in gentleness and quiet, supported but not hurried.  

Supported but not hurried. She's just not ready to go yet.  So we will wait until she is.

Nicci, Day Thirteen of Hospice

I've been gone a couple of hours and just returned home.  My brother and sister are here and told me, "Blog about Nicci:  She's taking wonderful care of Mother."  

If you've been reading this blog, you know that I've been frustrated about not being able to get back onto continuous care after Mother had that additional stroke Monday night.  I know it is an art form to try to determine when someone is going to die.  Everyone does this at a different pace.

But I also know that I've sat at the bedside of a lot of dying people in my work as pastor, and I knew something had changed radically with Mother and she was spiraling down rapidly.  And I wanted more help.

We now have it.  We were able to keep our night nurse, now through hospice.  And for the days, we have Nicci.  I had left this morning just after she came, so had not yet spent any time with her and didn't know much about her.  But now I know:  she is a consummate hospice care-giver and her goal is absolutely:  "No discomfort."  

She's watching her closely, monitoring her every grimace, adjusting, hovering, and asking us to give meds as necessary. (In case you did't know this:  only nurses can actually give the meds.  Patient care specialists and certified nurse assistants can't give the meds.  When they are in attendance, the family must give the meds.)  And I've learned now to do it.  We can give morphine every hour, if necessary, and more has been ordered, so there is no chance of running out

We're all more calm now.  We sense that all is covered.  Nicci during the day, Suerae at night, I'm starting to breath again.  At least a little, since I still tend to mimic mother's breathing.  Her sleep apnea (30 seconds on, 30 seconds off) has eased some with the heavy doses of morphine and with supplemental oxygen.  

Maybe I can get some work done. But probably not.

How Much Will We Have Spent?

As Mother comes closer and closer to her final moments on earth (probably two to three more days:  we have had to very much increase her morphine in the last 24 hours and she no longer has any signs of consciousness), my brother, sister and I are having frequent meetings to address the complex issues concerning the winding up of her estate.

When my dad died three years ago, the concerns were much simpler:  just make sure that Mother was cared for financially and that all assets were properly transferred into her name.

But now, huge complexities arise.  The biggest for us is her house and all its contents, and I'll write more about that another time.  Right now, we have the concern of making sure we've got the cash available to pay all final bills.  And we have no clue how much they will be.

We have not yet seen the bills from the first hospitalization, which lasted for twelve days.  Twelve days, multiple CT scans, feeding tube insertion, EEG, emergency room fees, cardiac monitoring fees, IV medications, etc.  There will essentially be a charge for every molecule of oxygen delivered through the lines wired into her rooms.  Medicare picks up much of this, but not all. 

Then there was a second hospitalization where she was just admitted under "observation" status--and I've read something that suggests the Medicare may try not to cover that one.  We also have eight days in a skilled nursing facility at some huge sum per day that gets billed somewhere, somehow, to someone, again primarily to Medicare but there may be overflow charges we have yet to see.

What we thought was good supplemental insurance turned out not to be good at all--the policy had changed radically since my dad's death.  

After hospice took over, and we brought her home, we no longer had medication charges, plus they supplied all the equipment we needed.  But we made the necessary choice to hire a night nurse, so over a week of her kind and competent services must be paid for from our pockets--or our mother's pocket, as the case may be.  We are now back on hospice covered continuous care, so that expense is probably done, however.

My sister's understanding is that as soon as the obituary hits the newspapers, her bank account will be frozen for a period of time. (OK, I'm wondering:  do they pay someone to read those every day and tell banks, "Another one down--send the liquid nitrogen on that account, NOW!).  Anyway, she's trying to make sure that enough cash is pulled out now so we'll have it later when those bills overflow the mailbox.

Years ago, my mother made the decision to donate her body to science upon her death.  Her comment, "The medical students might be able to learn a lot from a elderly woman who has never had a surgery and who took no medications except vitamins all her life."  Because of this decision, and with the paperwork long since completed, we will not have funeral costs until the cremains are returned to me a couple of years from now.  Then I will figure out what do to with them as I still have my dad's cremains in my possession as well.

I do not regret any money spent on my mother.  What I do know, however, is that we have followed the same pattern that many others have followed:  the vast majority (and in her case the total amount because of her life-long intentional avoidance of the health care system) of health care dollars spent on her were spent in the last few weeks of life.  I am intensely curious about how much will actually be billed from all this.  

And then there is something else that keeps haunting me.  I know we'll get through all this, and will not be impoverished by it.  Resources have been set aside for this; we hired the extra help not only because we knew we had to have it, but also because we knew we could. We'll go over the hospital bills item by item, but will pay what is our share.  It is the right thing to do, and we are seeking righteousness and honor in this time of loss. 

But many questions arise for me.  Both my brother and I have relinquished huge amounts of our normal work activities in order to ensure that someone is in the house all the time, and preferably two of us, just to make sure we give proper care to our mother. 

What do those do who don't have that kind of employment flexibility?

What do those do who live on the financial margin?  

Health care in general, and especially end of life care and expenses associated with death, can easily bankrupt a financially fragile family system.  In this time of grief and exhaustion, it is so easy just to throw up our hands and say, "So what?"  "What's one more expense here?"  "So what if I lose my job over this?  It's my mother (father, child, etc) that must be cared for."  Yes, that is true.  These choices must be made.  But I wonder about a system so riddled with inequities that make those particular choices too often necessary.

Just my meanderings this day, now five weeks after her stroke and on our thirteenth day of hospice care.

(Note:  the title should actually have been day TWELVE of hospice, but in my general exhaustion, I got the number wrong.  I didn't want to change it because it would have to be reposted).


Genesis 2:7 reads, "Then the Lord God formed man from the dust of the ground, and breathed into his nostrils the breath of life; and the man became a living being."

God breathed into this dust-based earth-creature the breath of life--and then, and only then, did this lump of dust turn into something human.

Breaths, breathing, air, life . . . Mother now only breathes 30 seconds out of every minute. I just took a short nap, or at least tried to, on the couch near her bed. But I kept waking up because I kept NOT hearing her breathe. She just stops.

A few minutes ago, her caregiver came to give her a bath, something that had become the high point of my mother's day. The two of us stood over her bed, talking to her, talking about her, touching her, and watching her not breathe.  Even that much conversation, touching, movement, noise did not rouse her.  She is being bathed right now; still no response, other than the 30 seconds on/30 seconds off.  The caregiver immediately phoned her supervisor and asked once again that she be evaluated for continuous care stating a major decline in the last 24 hours.  We both think she has lost her sight.  I do know she can still hear, and they all say this is the last sense to go.

Why can't they hear me when I ask for this?  Why are my words so disregarded?  Someone came last night and checked her out, and apparently Mother managed to open her eyes once and give some mumbled response. That was enough for them to say, "nope.  No continuous care yet."

My sons keep calling, checking on me; checking on her.  I sense their anxiety.  What can they do to help?  They've already done so much. They came; they talked and laughed with her; they offered their hugs and love to me.  They hung out with each other in their adulthood way, but still ribbing each other the way they did as younger boys.

The four of us, my three sons and me, played a few games of bridge together Sunday afternoon.  Ours is a bridge playing family.  My dad was a Grand Master.  My brother, sister and I all learned to play when we were young, and so did my own sons.  We're also a VERY COMPETITIVE family, so games tend toward the cutthroat.  

The three boys and the one spouse here had played the night before, and the two younger ones had pretty well slaughtered the oldest.  So, when the four of us sat down to play, and I mentioned that I'm more than rusty with my game, the two youngest immediately saw their chance:  they paired me with the oldest, Jonathan, figuring they would bury us.

We all overbid, most hands went down.  Play was aggressive, as usual.  Jonathan and I finally got some cards, and a few hands that fit.  We ended up leaving them choking on our dust, and we gleefully gave the high five across the table.

Yes, we left in them our dust. Dust, the stuff that gathers in little used corners and builds surreptitiously on the tops of refrigerators and tall bookcases.  Dust, the stuff that humans are made of.  Dust, that which needs the breath of God to bring to life.  And the breath is quickly leaving my mother as she too makes her return to dust.

Restlessness and Discomfort, Day 12 of Hospice

Rough morning.  Restlessness and discomfort predominated for at least an hour and a half this morning.  Mother is minimally conscious, eyes half open, but unfocused, but she can still hear and nod her head yes or no.  

I suspect we're going to have to give her both the pain meds and the anti-anxiety meds more often now.  I have to recognize that she will not converse with us any more, even in that "orientated/disoriented" state that she has occupied since the stroke.  Another part of her gone, only to reside in our memories.

Both my brother and I had a hard time with this today--watching her so restless and clearly upset, but unable to tell us what is happening.  I wonder if she's suffering from morphine psychosis. I've personally seen this in older people before where the administration of morphine causes nasty hallucinations, rather than good pain relief.  I've about decided to try to stay on top of the anxiety with the lorazepam and just hope the fentanyl patch does the job for other discomfort and see if we can leave off the morphine.  So difficult to balance this when she can't tell us anything and all we can do is look for signs of discomfort and hope we read them correctly.

I keep trying to move our hospice coverage to continuous care but am not getting very far.  The apparent pain scares me and I don't like to have to manage this without more professional help.  And then there is the whole breathing thing, the pronounced sleep apnea.  Hard to listen to.  She just stops.  And then I start holding my breath until she starts again.  

I am also suffering from a major lack of sleep myself. Just couldn't to sleep last night, and very much feel it.  I feel lightheaded with fatigue and with these imitative breathing patterns I'm doing.

I had intended to spend today and tomorrow at the very least at the church taking care of things so piling up there, but it won't happen. I have this mental picture of myself tossing one thing after another off my desk and to-do list like live grenades getting ready to explode, but all these incredible people manage to catch them, defuse them, and competently handle them.  I am extraordinarily fortunate.

And I keep asking the question:  how do people do this who don't have some of the resources we have?  I hope to begin to explore this more later today.

 

The End Is Near, Day Eleven of Hospice

I was planning to go ahead and sleep in my own bed tonight, since my body clearly longs for good and deep sleep.  But my brother emailed and said that mother was clearly getting worse.  I made a snap decision to go ahead and come back here for the night and probably several days to follow.  I also prevailed upon my long-suffering and night-owl husband to drive me here.

Our night nurse is here and before she had come, the hospice nurse had come and administered the first dose ever of morphine along with some more lorazepam.  Even with that, Mother is very restless and I am concerned about what she is experiencing. She is also not conscious, not able to respond to me or to others.

Her breathing is sporadic. She stops for 30 seconds and then will start again.  Larry said she's been doing that all day.  Kidneys very much shutting down.  All the normal process of the body saying goodbye.  

So, I sit here and ponder the mystery of death.  The body at this point is essentially a mass of barely living tissue that stills needs proper care.  I'm watching the night nurse and Larry, my brother, move her and shift her around to ease some of the pressure on her backside, where the flesh is getting too tender and starting to show signs of impending of bedsores. Those we very much want to avoid. She's been rolled from side to side, shifted around in the bed, pull sheets changed, and her eyes stay half closed, her countenance unresponsive.

Where is she?  What is she thinking?  Where is that quick functioning brain of hers?  How is the Spirit of God caring for her at this moment?  Where is her soul?  How does it stay intact as the body shuts down?

So many questions. So few answers. Keith and I are just talking with the nurse now.  Larry has headed to bed.  I need to, but just can't leave her right now.

So, I shall sit here, and just be.  That's all I can do.  Just be.  And remember to breathe.

A Brief Update, Day 10 of Hospice

I have not yet seen Mother this morning, but have just received an email from my brother.  He wrote what I had guessed:  last night's stroke means she will no longer be able to take in liquid or food.  The last days have arrived.

I will be driving down shortly to collect my middle son and family to get them to the airport.  

I'm numb, but not surprised.  Grateful this won't go on forever; sorrowful at the loss; grateful especially for my sons and their willingness to so quickly get here and spend this weekend with her, to feed her and talk with her and tease her and turn her and watch TV with her.  Grateful for all the friends and colleagues who have expressed love for me as they've supported me, read this blog, sent messages.  Understanding when they say, "I wish I could do more."  I've said the same words myself.  I am filled with love, and also with food, so generously given by those in the church where I serve.

Thank you.

Urgency Hits, Day Nine of Hospice

Last Thursday, September 9, a sense of urgency hit me.  There were several legal/financial matters concerning Mother's estate that my brother and sister and I had been talking about, and I said, "Whatever we need to do, we need to do it NOW.  I have a strong feeling something is going to happen next Tuesday."

It made no sense.  On that day, Mother was talkative, pretty alert, and more awake than we had seen her. My brother commented, "She'll probably live another year!" Yet I couldn't shake it.

This past weekend has been fun and full of family.  The house bulged with granchildren and a couple of her great-grandchildren.  Clearly, as little as Mother often seemed to comprehend who was who, she also liked seeing them.  We often held Kate up to talk with her. Kate, three years old, looks very, very much like my mother:  same inquiring blue eyes, same thoughtful expression, and, as someone said today, "from the eyes up, they are clones of each other."  We talked, ate, played games, relaxed together.

One son flew out Sunday, another this evening. I plan to take the third, along with his wife and two children, to the airport in the morning.

But my own tears were unstoppable today.  I kept thinking it was just the exhaustion.  But this sense of loss pushed at me.  Grief and anguish sat beside me.

I had noticed a disturbing change in Mother earlier today.  She became extremely restless, and expressed significant discomfort. Rarely has she even mentioned physical discomfort, although we knew she was beginning to feel some.  I offered her pain relief, and she indicated she would like it:  very much not her usual response.  Shortly after I gave her a small dose, the hospice care-giver showed up and gave her a good bath--mother's great pleasure for the day.  She clearly felt better afterward, and then fell into a long and very peaceful sleep.

But 20 extra years settled on her face.  My sister and I both remarked how much she looked like her own mother shortly before her death.

I left around 6:30 p.m. not even sure I had the energy for the 50 mile drive home but knowing that if I didn't leave then, I would never make it.

By 9:00, I was in bed, and asleep about one minute afterward.

At 10:25, my phone rang.  My brother said, "Just wanted you to know: something just happened to Mother." The night nurse, Suerea, (our treasure:  every one of us who is there breathes a daily sigh of relief when she walks in) arrived and Mother, refreshed after her long afternoon's deep sleep, greeted her with "You work too hard!"  Suerea and Larry began to work on getting some liquids down her and a bit of food, since she'd had little that day.

Then, according to Larry, her eyes rolled back into her head and she became unresponsive for a few seconds.  A few minutes later, she looked at them, but could no longer speak words that made sense to Larry.  She will not squeeze my brother's hand with her right hand now--it had not been affected by the previous strokes.  

I said, "I thought it would be tomorrow, not today" and asked him to call our hospice case manager.

I am not driving down there tonight.  There is nothing I can do, and I know too well that I need sleep in order to function.  

I've been able to share many words of love and appreciation with and for my mother over the last nine days.  She reveled in knowing how much she was cared for and that she had also handed to me her gift of writing.  I could see the pleasure fill her countenance--such joy it brought!  

The angels who come to collect those preparing to enter fully into God's presence are gathering at her bedside now. When Mother is ready, they'll take her home.  When Mother is ready . . . and I don't think she is yet.  Even while I was writing this, some of her awareness and speech returned.  But there will be yet another, and then another episode like this before that final one comes.  I am as ready as I know how to be. And now I must try again to sleep.

Anxiety Attack, Day Eight of Hospice

Mother had an unusual reaction to some medication we gave her last night. This was the first time she had complained of pain, so we gave her a small dose a common pain reliever of hydrocodone and acetaminophen that had been provided by the hospice pharmacy.

I assumed it would make her sleepy, but instead she became very, very talkative. More words came tumbling out in the next hour than she has probably spoken totally since the strokes occurred over four weeks ago.

She stayed in what I call her “orientation/disorientation” spot of knowing and not knowing. Present and past appear to be the same to her. Last night, she tapped into some long dormant, or at least unspoken, emotional memories.

She expressed much fear that we were angry or disappointed in her. Her anxiety level at needing the kind of care that she needs (she suddenly seemed much more aware of her health situation--this was new) started to boil over. She’s always been such a giver and has always had a hard time receiving gifts or services from others. 

She spoke at length about her own mother, whom we all called Granny, and who had lived with my mom and dad for nearly 30 years after she was widowed. Mother kept talking about Granny’s helplessness in so many areas: she couldn’t drive, couldn’t make decisions, couldn’t figure out how to shape her life, couldn’t live independently. Although we children loved having Granny live with us, I was always aware that this was not easy for my mother. Ever.

I saw more clearly last night where my own mother’s need for radical independence came from. She did not want to repeat that cycle. And now, as I feared would happen, she is in her own nightmare, fully dependent upon others, unable to do one single thing to care for herself, and seeing herself as having failed us.

I drove home much later than I had planned because of the length of this conversation and my need to listen as carefully as possible to her. I’m painfully aware that I’m barely functioning. I can’t seem to hear or speak or think clearly. I stopped by the church and picked up some things I needed and exhaustedly drove to the house.

Then my own anxiety, mirroring my mother’s, took over and I felt swept away by the tide of my own sense of failure. I am having to take some time away from many of my ministry responsibilities. This letter was read this morning in worship and will be given to the congregation. Grief took over last night. I, too, must be on the receiving end of things. I simply can’t keep going without some relief. 

My mother and I are in the same place. We have the same choices before us. We can receive gratefully the movements of grace and love that are being poured out upon us by our families, our friends, our colleagues, our churches, and our communities, and find peace. Or, we can let our anxiety take over, our guilt at being the receivers rather than the givers, our anguish at not being in control (clearly a huge issue for both of us) and collapse internally.

The tie to the Gospel message shouts at me with this realization. I cannot serve and give and earn my way into the Kingdom of Heaven. I can only receive the gift given at huge expense, be grateful for the cross, and walk through the door held open for me that leads to the resurrection. But, truth be told, I’d rather do it myself. And I’m just betting I’m not alone. I don’t want to be beholden to God. But I am. Yes, I am. And with that knowledge, I can take another deep breath and go one yet one more hour, one more day, one more crisis.

Two For One

For years and years, churches have expected their pastors to offer the "two for one" package with the assumption that the pastor (always male) would have a wife who could freely volunteer her services full-time at the church.

Those days have long since passed.  First, two-career families nibbled away at that model. Then the entrance of women into the role of Pastor-in-Charge shot a big hole through it.  Few clergy families fit that mold now, and it is probably for the best.

When my husband, The Rev. J. Keith Cupples, and I first married, the church where he served in Wichita Falls simply didn't know what to make of me.  They actually had a "two for one" before us, and assumed I would fill that role.  But I had taken work at a seminary in Chicago, so was gone about three weeks out of four, and when I was present, didn't do the normal pastor wife thing.  Somehow, they figured out a way to embrace and love me, and I give them great credit for their adaptability.

When I was first appointed here at the Krum Church, you had a pastor with an invisible husband, as he was appointed elsewhere.  In the last year, he has made his presence known by his glorious singing voice ringing from the back of the worship center, and by his generous supply of doughnuts each week.  Recently, he has also been helping with Sunday School, and many have benefited from his insights and wisdom. 

As most of you know, my mother has suffered a catastrophic stroke and is now living in her house 50 miles from here.  She is immobilized in a hospital bed, and needs round-the-clock care until the time comes when God calls her home.  We do not know how long that will be, and we seek to celebrate the process, no matter how long it takes.

My brother, sister and I are all rearranging our lives in order to honor my mother's wishes that she be given the privilege of a gentle passing in her time and in her way.  This means that I will need to spend a significant amount of time with her each week, as she cannot under any circumstances be left alone, and it also takes two of us to make sure she is turned every two hours to avoid bed sores.

So the question has arisen, "How to do this, and still serve as your pastor as appointed by the Bishop of the North Texas Conference to lead in areas of Word, Sacrament, Order and Service?"

An extended conversation with my District Superintendent opened the door to this temporary solution: take advantage of the "Two for One" that Keith and I bring to you.  Ultimate responsibility for church governance, direction and policies remains with me as your appointed clergy person, working side by side with the Board of Stewards.  I will continue to lead the New Worship Service Launch Team, work with LOGOS ministry, keep up the writing ministry, and meet with and advise administrative committees.  Keith will pick up Sunday preaching responsibilities and pastoral care concerns. 

This is a hard decision for me.  I love our worship and it is a weekly privilege to spend those hours steeped in the Word of God and discerning the message that God has for us there.  However, Keith has excellent preaching gifts, and by his taking that responsibility, I can be assured that worship times will not be shortchanged in any way.

This is also a short-term solution.  All I can do is take this one day at a time, and see what happens.

Since all this began on August 13, 2010, I have been aware that I have been surrounded and supported by your prayers and your concern.  Thank you.  It is my earnest prayer now that, as you continue to offer that love and support, you also continue to be the powerful light of the grace of Jesus Christ to this community and the world beyond.  We have much work to do, and many to reach.  Let us continue to go forward.

With great love for all of you, and a heart of thankfulness that I get to serve here,

Christy

The Rev. Dr. Christy Thomas, Pastor

All "the boys," as I call them, flew in yesterday.  "The boys" consist of my grown three sons, Jonathan, David and Daniel, along with one wife (David's wife, Shawna) and their two children, Kate and Wesley, three and four months, respectively.

They came at my request.  It seems far, far better to me that they spend some time with their Grandma while she is alive, rather than showing up at a memorial service later.  

So, "Hotel Thomas," as we nicknamed my mother's upstairs two-bedroom/one bath suite, is now full with the overflow settling into the two downstairs bedrooms, as my brother, Larry, has also flown in from California to stay for a while.

The good cooks at my church had generously responded to a call for food, so I loaded all that up and had filled the refrigerator.  Last night, we sat around a packed-out dining table (my daughter-in-law's sister and her husband also joined us), ate good, home-cooked food, and I gloried in family.

I had made a beer and ice cream run for the boys.  Two of them live in NYC, and the other in London, England.  In neither place is Blue Bell Ice Cream available, so they needed their fix that they can only get here.  A friend had supplied a couple of bottles of a pretty darn decent cheap wine available (WalMart brand) so I poured this for the women.  And Shawna immediately wailed, "Why don't we have a Walmart in New York!  This is amazing!"  Later, my brother got his wife and very, very pregnant daughter to connect with us on I-Chat, so we all got to admire Shannon's "baby bulge" and catch up with the two of them.  Family at its best.

And mother getting worse.  My oldest, Jonathan, had come to see her a week after the stroke, three weeks ago today.  Mentally, she was much, much better then than now.  This again reminds my of my frustration that someone can come in and pronounce my mother "fine and alert" mentally when we who know her know that she is missing seven beats out of eight.  It's just that her eighth beat is still so powerful that only those who know her are aware of the lost seven before it.  I had the same problem with my father near the end of his life.  These two people had lifelong habits of practicing the life of the mind.  Those habits continue to serve them even when they are experiencing almost complete disconnect.  Why don't health professionals know this?

We could barely awaken her yesterday.  The night before, at the suggestion of our Hospice folks, the night nurse had administered a tiny dose of Lorazepam, because her nights are growing more and more restless. This stuff is supposed to be metabolized in four hours.  It took over twenty hours to get it mostly out of Mother's system.  That meant that we were essentially unable to get any liquids or semi-solid nourishment in her all day.

I brought with me a copy of the Denton Record Chronicle.  I write regularly for them and yesterday's column was about her and her entrance into Hospice care.  She said she wanted to read it and asked for her glasses.  So I found a pair of reading glasses (as do I, she bought them in bulk and they are scattered all over the house), and put her little tray table in front of her, after raising the head of the bed.  She tried to read, this woman who could swallow book after book, and who really did read three newspapers thoroughly each day.  She tried, but moments later, she was just staring out the window.  

When Jonathan got there, late in the afternoon, she was awake but did not seem to know who he was.  When I brought Shawna over to talk with her, Mother thought this was someone she had seen about 50 years ago, but could not access any recent knowledge of her.  My mother could not name her own three children to me later.  The stroke has caused what I am calling an "instant Alzheimer's" in her.  

With all those people at mother's house, I am spending my nights in Krum, where I do sleep marginally better.  This afternoon, I have a memorial service at the church where it is my privilege to officiate after the death of what had been our oldest living member (she was 103!), and then I will head back to Richardson for the evening.  I neglect things here in favor of caring for things there.  In the middle of the night, it just hit me suddenly that I am no longer young, and have almost completely depleted my own energy reserves.  I trust God will give strength, but that strength will come if I cooperate with the Spirit of God and get rest.  And that's the challenge.  I'm feel sometimes that I'm forgetting to breathe these days.

The Woman I am Fighting So Hard For

Below is an article I wrote about my mother for Mother's Day, 2007.  For those of you who are being so supportive of me and our family through these times, I thought it might help if you had a better picture of this unique woman.

The Rev. Dr. Christy Thomas

Daughter

214-418-9541

pastorchristy@gmail.com

---

A couple of years ago, I was catching up with some friends from high school. Since my mother was an extremely active volunteer during my high school years, she knew (and was known by) all my friends. They called her “Mrs. T” and many people had a lot of affection for her. I wrote this about her: "My mother is just the same as she was while we were in high school. Her mind is extremely sharp; her energy level is amazing, she continues to offer so much help to so many as she generously gives away her time and talents. I have much, much admiration for her."

Now, I promptly forgot that I wrote this and never mentioned it to my mother. But I posted it on an online bulletin board where others of my class were posting messages. One of my classmates saw it, sent it to her mother, who then saw my mother in their joint Sunday school class and gave her a copy of it.

When Mother’s Day came around that day, I went by to see her and take her some flowers. She said that she had already received the best Mother’s Day present possible from me. I looked at her with puzzlement. I am not the most observant of daughters, and knew I had not done anything previously. But she told me that she had seen what I had written and it had touched her deeply.

I realized then how little I had voiced my appreciation for her. Our relationship has been challenging over the years—something common to many mother/daughter ties. I both needed her and didn’t want to need her. I would have never made it through the early years with my own children had she not been willing and able to help in the ways she did. When I hit an extremely rough time in my life about 12 years ago, she was there to support me through that. 

Over and over again, I’ve argued with her, just sure that I knew better than she did about how she should live her life. Twenty years ago, my parents sold their large but in poor repair house in Old East Dallas and built a new house in Richardson, near my own home at that time. They insisted on putting in an upstairs living space. I told them they were crazy. By then, neither my mother nor my dad could climb stairs comfortably, and the ground level was more than adequate for their needs. But Mother insisted. And how right she was. That space came to be known as “Hotel Thomas” and every single family member has spent days, weeks and even months there for various reasons. We used to joke about her having to take reservations for the space.

 

She’s never learned to use a computer well, and the Internet and email is still a mystery to her. But she can write an article and type it with word-perfect accuracy, head to the library to research investments, dictate to her stockbroker with amazing insight exactly what he should buy and sell, and add a long column of numbers in her head, figure the sales tax, and be precisely on the money. She’s a pretty bad cook, but still manages three meals a day for herself and for my very frail dad, takes care of him, plays bridge with her friends, reads three newspapers a day, and clips and sends articles to the various grandchildren (not understanding that a hyperlink in an email could do the same things MUCH FASTER).

So for this Mother’s Day celebration, coming Sunday, May 13, I say to my mother, Mrs. T, “Thank you. You’ve been a treasure and inspiration to me. I could have never done it without you. May God bless you richly.” I hope you will join me in offering the same to those who have mothered you. Where would we be without them?

See you Sunday,

Christy

The Rev. Dr. Christy Thomas, Pastor, Krum UMC

Hospice and Government Regulations

After seeing what I had posted earlier today, an attorney friend of mine got in touch with me to inquire which hospice organization we are using.  I have deliberately not used the name of that particular hospice as I believed that it was not fair to give them bad publicity without giving some time to rectify what had happened. 

This good and powerful friend of mine made some phone calls, and I soon heard from the hospice director.  A few things were straightened out.  First, which I had not mentioned in the blog before, we still had not received the promised set of medications (the Comfort Pack) that would give us the ability to manage my mother's pain.  So we had been home with her for five days without those important meds.  She had been admitted over a holiday weekend, and the out of state pharmacy used didn't fill orders during that time, but no arrangements of any kind had been made to get a local pharmacy to send them.  

We do not think our mother is in a great deal of pain, but we actually don't know as she has very much lost touch with what her body is doing and feeling. And when the supervisor described to me the signs of pain that a person in that situation usually gives, I realized my mother had been giving most of those.  This just breaks my heart.

 

Second, the nursing supervisor, whom I had nicknamed "Miss Arrogant-Snip" has been removed from our case and I understand will have no decisions concerning her future care. For that I am thankful.  I also hope this is a learning experience for her.

Third, we were offered a bit more help, but it is still a drop in the bucket compared to what we need.

Now, another friend has just commented, "Since we were told that we cannot under any circumstances leave my mother alone, why does that not qualify us for continuous care?" 

Good question.  Answer:  because it doesn't.  Period.  According to the person with whom I spoke today, "her hands are tied" by government regulations as to what they can and cannot offer. Although my mother is terminal, we are probably some time yet from the final days, and there is no continuous care offered until one of their medical personnel decide that she is about to breath her last.

So, if we had agreed to let medical people do what they wanted with my mother's body last week, we could have kept her in the hospital for a while, with all charges covered by Medicare.  Then they would have shuffled her back to the rehab-skilled nursing center, with all charges covered by Medicare, where they would have worked with her a little while until the next medical crisis would have sent her back to the hospital again.  Each of these organizations charge exorbitant amounts to Medicare on behalf of my mother. However, because we chose to do the honorable thing, we're stuck with the bill for the vast majority of her care.

Let me ask you: how many of you are able to completely set your lives aside in order to care for your aging family members and help them have a dignified dying process? How many can leave behind work, family, church and social obligations to make sure that those parents and grandparents who gave so much to us are properly cared for at the end of their lives?  

My mother sacrificially saved and invested her money all her life.  To know that we are going to be spending a large portion of that carefully built-up savings on the extra nursing care we must have in order to keep our own sanity and health would break her heart.  She would have gladly sought a way to gently and painlessly end her life if such a thought had ever occurred to her.  She had made these wishes abundantly clear. 

Am I calling for assisted suicide here?  No, I am not.  But I've asked medical personnel after medical personnel from the beginning of this journey if this is the way they want to die.  Every one of them has said, "No."

We have got to change this system.  Contact your congressional representatives.  Send a link to this blog to help raise the question.  Raise a ruckus.  If you think this won't happen to you, you are probably wrong.  Speak up now.  There are a huge number of baby boomers getting ready to enter these complicated years where we must make end of life decisions.  We've got to deal with this before too many of us Boomers reach the state my mother is in.  We will bankrupt the entire nation with our medical needs at the end of our lives if we can't find a more reasonable way to approach this time.