It is about 11:30am and Mary Ann is still sleeping.  She got up last evening long enough to eat some ice cream and apple crisp.  Then she took her pills, went back to bed and slept the entire night.  This morning, there was a commode trip at about 7am, then at about 8:30am she got up long enough to have juice (with Miralax) and yogurt.  Then she decided she wanted to go back to bed.

The good news about this is that when she has been up, she has been able to interact verbally and has not been picking up threads that are not there, nor has she acted as if she was hallucinating.  Her head is no longer hanging down on her chest.  Needless to say, those are encouraging signs. She is still unable able to eat without assistance.  I fed her last night and this morning, even putting her pills in her mouth.  She did manage to lift the cup and drink most of the juice by herself.

Yesterday, I chose not to awaken her for medications.  Most of her meds are intended to help her when she is up and about.  Most of them have a short half life.  They help when they are in her system, but are not necessarily maintaining a constant level of medicine 24/7.  Missing one dose of the meds seemed to me to be acceptable. I concluded that the rest was more important.  She did take her night time meds, so there has been no interruption in them.  She took the morning pills today, and while she was lying in bed, I changed the Exelon patch she had worn for two days.  That is a med that needs not to be stopped for long.  It is pretty powerful and when initiating the patch, it takes a month on a lower dose to keep from creating the unpleasant side effect of pretty bad nausea — been there, done that.  I am also going to wake her up for the meds that come every two hours during the day.  My goal is to return to and maintain a normal schedule in hopes that will help us return to the pre-hospital norm.

The other parallel recuperation activity needed includes intestinal activity.  There has been some activity, this morning during the 7am trip to the commode.  Then before going to back to bed after breakfast (the yogurt, juice and pills) there was a little more substantial activity.  At the risk of being indelicate (there is nothing delicate about being a Caregiver), it is still at the stage where manual help is needed.  With that lovely image in mind, you can appreciate my excitement when things come out on their own and Dr. Oz’s S appears.  We are not yet back to that wonderful normal.  At this point I am hopeful that in a couple of days we will be there.

Of course I cannot know where this will go, but my intention is to methodically do all the things we have normally done in the past as they are possible.  My hope is that by Tuesday, a week from leaving the hospital, normal will have returned.  Whatever is so by then will probably need to be established as our new norm.

My need to establish a norm of some sort, any sort, comes from the way I am wired.  When I get a set of expectations in mind, it is tough for me to incorporate changes very quickly.  Since retirement, the rewiring is in progress.  By removing almost all commitments, there is space and time to adapt to whatever changes come without the added stress of failing to meet those commitments.  When we went to the hospital, there were a few appointments (dentist, doctor, among them) to be changed, but nothing for which I had to find substitutes or burden others to do for me.

Even though things can change dramatically at any moment (as in Saturday’s entrance into the hospital), the norm is where my pivot foot rests when I turn to meet the unplanned, unexpected.  Unlike Michael Jordan in his best days, I cannot hang in the air for very long without a place to stand.

In a moment of devotional time last evening, I read this prayer.  I receive a weekly email from the National Catholic Reporter web site with a devotion by Fr. Ed Hayes.  (Yes, they allow Lutheran Pastors on their site.)  I have appreciated his writings for decades, and I had the privilege of doing a marriage ceremony with him many years ago.

I need prayers for flexibility!

A Psalm of Flexibility

By Ed Hays
Created Nov 06, 2009

O spirit of God’s eternal springtime heart,
grant me the virtue of elasticity.

Make my heart as boundless as my Beloved’s heart,
which at this moment is creating
new galaxies and infant suns.

Make me pliable and playful with your Spirit
as you teach me the alchemist’s recipe
of how to keep my heart’s skin
like baby’s skin, ever-expansive,
able to hold the wildest of wines.

Stir my mind well with your sacred spoon
to awaken the fermentation of ideas
stilled by the ten thousand little compromises
required of me by the stiffness
of the old leathered skins of society and religion.

Gift me with elastic frontiers of heart and mind,
so I can see before my eyes,
both in the heavens and on earth,
how old and ever-new are those partners
passionately dancing together
in the perpetual birthing of your universe.

From Prayers for a Planetary Pilgrim by Ed Hays

The Spiritual support I receive through Ed’s writings, through the Taize Music from their site, from Weavings, a spirituality journal, through Scripture, corporate worship and the Spiritual Formation Group that meets at our house weekly, helps provide the source strength that has allowed survival so far.

There are many wonderful folks who give personal support to our household.  Yesterday afternoon, John called and asked to come over for a time to talk.  John has been a support for very many years.  Mary, our friend who schedules Volunteers, had let him know that things were getting a little hard to handle at our house.  Yesterday, Edie, the leader of our Spiritual Formation group emailed about the possibility of bringing dinner over.  Don and Edie came over and we feasted on lasagna, salad, gourmet bread, some Shiraz red wine, topped off with apple crisp and vanilla ice cream.  Mary Ann slept through supper, but ate a big bowl of apple crisp and ice cream later in the evening.

It is now about 1:30pm and Mary Ann is still sleeping soundly.  She has had two rounds of the meds that come at two hour intervals during the day.  To administer the meds, I put my hand under the pillow, lift her head, put them in her mouth, hold a straw to her mouth and she drinks until the pill(s) are down.  Often, when I give her the pill(s), she gets up from napping.  The last few days when I let her head back down, she just goes back to sleep.  It has not been unusual in the past for her to continue to sleep, just not so many times in a row.

She finally got up and dressed around 2:30pm.  She ate a little more, then provided some unaided intestinal activity worthy celebration.  She went back to bed at about 5pm.  It is 9:30pm now.  She is still sleeping.  We will see how the night goes.

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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There are just a handful of us, usually four, who gather on the back deck or in the downstairs when the weather is uninviting (this is Kansas).  We begin at 7:30am each Wednesday morning.  With the disjointed and erratic sleep patterns in our household, caffeine is a great gift from God! Hot coffee is the delivery system of choice — yes, even in Kansas on hot summer days (not many this year).

Our central purpose for that two hours is to grow in our ability to engage the presence of God midstream in our days, no matter what we are doing.  We are a little slow.  We have been at this for probably seven years now and haven’t yet gotten it worked out.

That Spritual Formation Group time is one of my life preservers.  It is not a therapy group.  We have a book with readings and reflections to spark our thinking.  We do not understand life to be divided into compartments, one sacred and the other secular, or one physical and one spiritual.  We understand life to be one thing, and God to be its source and sustenance.

For whatever reason or reasons, this is a particularly unsettling time for me.  I am grateful for the lifesavers that are available to me.

One of the lifesavers is the sanctuary that is emerging behind our house.  The deck has always been an inviting place.  While it is probably no more than thirty feet from the back of the deck to the wooden privacy fence separating us from the next subdivision, there are now many good sized trees filling that space, some that we planted.  The trees and the view to either side extend pretty much without obstruction for the equivalent of at least a couple of blocks.  The fence behind us is up a fairly steep incline.  The combination of that hill, the fence, and the trees create the feeling of seclusion.

The multiple bird feeders and those who dine at them add to the sensation of an outdoor sanctuary in the woods.  Then there is the waterfall.  Four levels cascade over well placed rocks, each level adding to the volume of that wonderful sound of falling water.  That sound covers some of the people and vehicle sounds, feeding the sense of seclusion.

Some friends, Doug and Marikay, brought over additional plants for the wetland area created around the waterfall.  They also brought an old branch and placed it on the gravel base among the plants and rocks.  I am intrigued by that old branch.  It is certainly old — old enough to have patches of lichen covering it. The color of the lichen matches the lichen on the rocks and the color of the needles on the cypress tree that hangs over that part of the waterfall.

One of the things that intrigues me about the branch is the metaphor it provides for life, certainly the life we are living.  The branch is weathered and gnarled and without symmetry.  Any old farmer would have long since cut it up for firewood or burned it in a brushpile.  By the way, I like old farmers.  There is an old farmer living inside me — along with a young rebel.

With eyes to see it, there is an elegance and beauty that transcends symmetry and smooth surfaces and orderly shapes.  I wonder what that branch has seen, who has stepped over it, or climbed on it, or made its nest in it, what has marked its territory on it.  I wonder what stories it could tell.  Life as it is really lived is weathered, gnarled and without symmetry.  Trying to make life pretty and pleasing to the eye, wastes precious time needed to live it.

Our life is not pretty.  It is often smelly and ugly and messy, and certainly without a shred of orderliness.  It is also beautiful, deeply fulfilling, bursting with meaning and purpose, often emerging from the very ugliness itself.  I would not trade our cracks and crevasses and patches of lichen.

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.

Today is the first day this spring we have been able to meet on the deck.  There is a dramatic change in the feel of the experience when on the deck rather than in the downstairs family room.  At 7:30am the birds are fully engaged in noisy and boisterous activity.  In that setting we have been buzzed by hummingbirds heading for the feeder.  A Cooper’s Hawk has come crashing through concentrating on its prey, oblivious to coming within inches a ducking head.  Rabbits have come by the deck with little fear of being so close to people.  Hungry birds have ventured to a feeder no more than a couple of feet from the head of one of us.   

The smells and the sounds, the sun and clouds and trees and gently blowing breezes calm the spirits of our little group as we begin with a few moments of silent meditation.  Our silence has as part of its nature the sounds of nature, as well as car sounds, mowers, dogs, airplanes, whatever else that happens to be going on during those moments.  The sounds of nature seem to dominate. 

We refer to our group as a Spiritual Formation Group.  The Group began many years ago.  I am not sure how many at this point — maybe seven or eight years.   The size has ranged from four to six members.  There are just a couple of us who have been there from the very beginning.  There are five of us at the moment.  It meets at our home since I need to be on call for Mary Ann’s needs.  The group emerged at a time in the life of the Congregation when there was a special emphasis on starting small groups. 

Our goal is to incorporate what we believe into what we do moment by moment each day — the ordinary.  We seek to support one another in disciplines that increase the likelihood of our finding the strength to live meaningfully no matter what comes or how fast it comes. 

It is no small order.  This morning in the course of our conversation, I had a chance to do some more processing of yesterday’s emergency trip to the Dermatologist to re-sew stitches that had been torn out of Mary Ann’s shoulder by a fall, stitches intended to close the gaping hole left by the removal of a skin Cancer.  I should add quickly that after a restless night, a painful morning this morning, she slept four or five hours.   She is doing well at the moment, down for the night (hopefully). 

Our group has a covenant that includes confidentiality.  Any specifics will reflect only my thoughts and comments.  The rest will come in general terms. 

Caregivers need a support system!  We cannot do this by ourselves.  Some of the support comes in the form of help with tasks, companion care for Mary Ann, food, all sorts of tangibles.  The support that is to be found in a Spiritual Formation Group is the nurturing of the spirit, the center of being from which deep personal strength comes.  From that deep well of strength is drawn the power to endure, even thrive, in the face of adversity. 

My approach to talking about Spiritual Formation is intended to reflect two elements of my intentions for this Blog.  One intention is to reflect my own spirituality, since that is how I manage as a full time Caregiver.  I am a retired Lutheran Pastor.  I have a deep faith rooted in a very specific understanding of Who God is and what God has done.  My relationship with God is created and sustained by a fellow name Jesus Christ.  I make no apology for that faith. 

At the same time, this Blog is not a parochial piece intended exclusively for folks who happen to share my faith.   The most basic element of my faith is the unconditional love reflected in the Christian Story (a true story).  That love has no bounds.  I am very comfortable framing the truth in humanistic terms, scientific terms, philosophical terms.  I feel no need to defend my faith or force feed it to others — witness to it, yes.  It is a part of who I am and how I cope. 

I will seek to do so and enjoy framing the deep well of strength in a way that is accessible to people who have another spirituality or no spirituality at all in their view of reality. 

In our group, we always use a book of some sort intended for use in a spiritual formation small group setting.  We are currently using book in a series of Spiritual Formation Guides produced by Renovare (http://www.renovare.org).   The chapter we were doing today is titled “Being the Good News.”  Our conversation revolved around the question, “…how do you seek to act as the good news in the world?” 

This morning my need as a Caregiver was to process with others what had happened yesterday, the fall, the broken stitches, the dripping blood thinned by Plavix, the emergency trip to the doctor to be resewn.  I needed to process it so that I could face the harsh reality that had I been beside her I might have prevented it, that I had not been calm and cool and collected, sweet and nurturing throughout the experience.  I needed to affirm what I had done that was appropriate to keep Mary Ann safe, to get her the help she needed, to care for her during and after the trauma.

The conversation in that small group, the processing, helped me to reframe the experience in a way that allows me to accept my failings, celebrate the good, and see the possibility for change. 

For those who don’t have a spiritual dimension as part of their worldview, having a small group option for processing experiences is equally important.  The goal is to reframe what has happened in a way that gives it meaning.  Seeking to become more fully human is not only a help to your Loved One but a help in your own survival.  Each event is an opportunity for growth.  That growth can lead you to a better quality of life as you become more able to get past the reactive primitive brain impulses to thoughts and actions that are both sensible, humane and life affirming. 

Caregivers need a healthy, well-balanced support system.  A small group, in my situation, a Spiritual Formation Group, can help provide the deep source of strength needed to endure whatever life throws our way. 

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.