We are still pretty much snowed in.  Actually, the street and driveway have been clear enough to get out.  The main streets are passable according to the television weather folks, but many of the side streets are not   If we did try to get out, I am not sure what we would do and why.  Mobility in a wheel chair is pretty much compromised when there is snow and ice involved, even when shoveled.

We did not venture out today and may not do so tomorrow, although we will try to get to the Evening Service at church.  I am grateful for some meatloaf from the freezer brought by Maureen some time ago.  A couple of baked potatoes and half of a small head of cabbage rounded out supper.   There should be enough leftovers for tomorrow.  There is still cold meat and cheese from a Christmas gift brought over by former members — good people.  As always, I could eat for months on what we have in the freezer, but Mary Ann would starve. 

I am afraid the time here in the house together without break is wearing thin.  Today was an NCIS Marathon on television.  I like the program and find the characters entertaining, at least I did for the first few hours.  I wander back and forth to and from the computer and the kitchen, doing whatever chores there are to get away from the television. 

Finally, I moved to the kitchen to write some thank you notes and watch some news.  Mary Ann popped up and ended up on the Living Room floor.  She did not hurt herself.  As the grumpiness sets in, I found myself resenting the unwillingness to push the button next to her so that I could get there to help.  The video/audio monitor I use keep her in sight when not by her side  was by the computer.   I should have brought it into the kitchen, but I was not going to be in there long.  Taking the monitor from room to room through the day as I go back and forth and plugging it in so that I can see her just doesn’t seem very workable to me. 

I could be more assertive in insisting that the television be adjusted to my taste, but when she is not engaged in what is on television, she is up heading to one place or another, demanding my jumping up to be at her side.  It is far less difficult for me, if whatever is on TV captures her interest. 

It would have seemed reasonable to ask Mary Ann to help with the thank you notes to involve her in something other than watching television.  It is hard for both of us, but especially Mary Ann to accept how much she has lost.  Last year, I tried including her in the Christmas Card preparation.  She simply could not do any part of the task without utter frustration.  Finally, she tried putting the stamps on the cards.  She could not manage to get the self-stick stamps off the backing and then on the envelop anywhere near the spot they need to be.  She just gave up in frustration. 

It is hard to think about how much she has lost after being so talented in so many areas.  It is clearly very painful to her.  I think that what is hardest for her is the sheer boredom of not having things to do that she is able to do.  I am often disappointed in myself that I do not engage her more in trying to do things that mitigate her boredom.  I am so busy trying to entertain myself in between just doing the basic caregiving tasks, that I can’ t seem to bring myself to add more that might entertain her.   I am certainly not proud of that gaping flaw in my caregiving. 

During her nap today I began doing an online Spirituality Retreat using the Ignatian model.  There are different materials for each of thirty-four weeks.  It is provided by Creighton University.  I do not have a very good track record for keeping at such a discipline, especially in my current role.  I am hoping by attaching the retreat activities to Mary Ann’s daytime naps, I might find it doable on a continuing basis. 

The approach is to fold the central focus of that week into all the daily activities so that ultimately, it is running in the background of the retreatant’s mind no matter what he/she is doing at any given moment. 

The first week’s focus is on going through a picture album of the retreatant’s life using the mind’s eye.  The first couple of days focus on childhood, the second couple of days on teen through young adult years and the third couple of days the retreatant’s adult life.  The goal is not just to remember, but to tap the feelings associated with those events and look for learnings that came from them, gifts that both the good events and the bad ones left behind. 

I have some free software called iDaily Diary that I use for journaling on occasion.  There I will record reflections on the pictures that come to mind.  I may share bits and pieces if they are not too private and they relate in some way to the role of Caregiver. 

Enough for now.  It is late, and Mary Ann has been getting up pretty early the last few days.  I can feel the tiredness spreading through my mind and body.  Let’s hope for a good night of sleep. 

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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.

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Last night was pretty tough — up and down all night long, then up this morning at 6:45am.  The same is happening as I write this and has been going on for two or three hours.  There is no point in my trying to head in to bed yet since the activity is constant at the moment.  She has been climbing in and out of bed for no apparent reason with only minutes in between. 

While, again, it is a function of the disease, it is no less frustrating.  The time that I have generally claimed as my own in these late hours after Mary Ann goes to bed is coming to no longer be my time.  Tonight I set upon having some spiritual renewal time.  There is a podcast of  the Saturday worship service at the Taize Community in France.  The music is the sort that draws the participant in with a beautiful simplicity.  The readings are done in at least three, often more, languages.   There is a calm and peace that seems to include in community people like me, listening from thousands of miles away. 

I had first read a weekly poetic devotion by Fr. Ed Hayes, whose writings have had much impact on my personal Spiritual journey.  The reading suggested lighting a candle.  I haven’t done it in a very long time, but I pulled out a votive candle, placed in on the worship center, a cabinet built precisely for that purpose, with stained glass inserts in the doors.  I lighted another candle in a tall walnut candle stand made by my Dad, many decades ago.  Next to that candle stands the Shepherd’s Staff made by a parishioner and given to me at my retirement, a symbol of my forty years of ministry. 

A small iron Celtic Cross stands on the cabinet next to the votive candle.  Joining the Cross and candle on the worship center is a large ceramic bowl with lettering and symbols painted on by the other Staff members and again, given at my retirement.  The words are the summary of the congregation’s sense of purpose, “Grow in Faith.  Share Christ’s Love.”  The bowl is a symbol of Baptism, in our tradition, understood to be that first encounter with the Grace of God, an act of unconditional love by God, initiating relationship. 

One other item on that worship center is a simple memento of a long-standing friendship with a small group of parishioners from the first parish  I served as pastor.  It is a small beveled glass case with found items, pine cones, dried weeds, parts of plants, stones picked up on a trip together to Alaska many years ago.

With the candles and the light from the computer screen only,  I began the Taize worship.  As I settled in enjoying the sensations that come with such an experience, the monitor screen that keeps me aware of what Mary Ann is doing as I sit here, revealed the activity.  Since she is at risk of falling when she gets up, needs help to use the commode, to manage the cup of ice water next to her bed, to turn over in bed, her activity demands my participation. 

I have stopped and started the worship a number of times, getting more frustrated each time, resenting the loss of the freedom to enjoy the experience.  There is a odd sort of irony, that the very thing that helps me maintain a healthy equilibrium in caring for Mary Ann, is doing the opposite tonight. 

As the Neurologist allowed, I have just this evening increased the dosage of Seroquel, which is the medicine that both reduces the hallucinations and helps with sleep.  The last increase was not enough.  It is too soon to assess the effectiveness of this increase.  Certainly, the hallucinations have not decreased yet, they continue to be on the increase.  Just moments ago she told me to be careful of the little girl when I was adjusting her sheet.  This morning when she first got to the table for pills and breakfast, as soon as I turned on the light, she tried to show me the blood on her hands.  I think she believed it to be from the raccoons or whatever biting her.  There was, of course, no blood. 

Last night’s post mentioned my need for better choices in the area of diet and exercise for the sake of this Caregiver staying healthy.  Last night, today and tonight have revealed again the difficulty of following through with such plans.  When there are nights like these that string together, it is just survival mode.   A steady pattern of changed behavior seems completely out of reach.   I am still reading the book offering helps for improving the diet part of the problem.  Maybe some changes can be folded into our days. 

As Scarlett would say, “I’ll think about that tomorrow.”

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When Mary Ann got up from her chair once this afternoon, as usual, I got up from my chair to ask where she was going so that I could help her if needed.  She came the few steps toward me, placed her hands appropriately and began to dance.  This will be no surprise to those who know me well, but even after 22 years of Parkinson’s Disease, several heart attacks and blocked arteries, a stroke, a life-threatening bout with pneumonia, and now a couple of years into Parkinson’s Disease Dementia, she can still dance better than I can.  I stood and swayed a little, while she actually danced.  This is certainly a confusing little world in which the two of us are living.

The last couple of days have been better than the one I recounted in my last post.  Yesterday, Volunteer Edie came in the morning while I headed up to the lake to read, listen to music and watch the wildlife.  As always, Edie made a full and tasty meal for us, so Mary Ann actually ate well.

The meal I had prepared the night before did not thrill Mary Ann (pork chops, stir fried fresh veggies from parishioners’ gardens, and Uncle Ben’s butter and herb rice cooked in chicken broth).  That Saturday was pretty much a bust from beginning to end.

Sunday not only included the good meal that Edie had prepared, but there were football games.  Mary Ann is the more enthusiastic football fan in the house.  Both the Chiefs and the Bears lost, so she was not as pleased as she would have been had either or both won.

Today was a pretty normal day.  Zandra came to give her a shower.  That happens Mondays and Wednesdays.  We got out to the library, which she loves.  The library happens to be near G’s frozen yogurt, so there was the obligatory stop there.

A Volunteer, Jolene, came to spend time with Mary Ann after supper while I headed up to the spot with the view about ten minutes from our house.  I took with me a number of CD’s that I had picked up at the library.   After listening to one of the Celtic CD’s, I put in a CD of Taizé music.  Taizé is a community in France to which young people in particular come to be spiritually renewed.  I haven’t been there, so I can’t really describe what it is like other than what I have heard and read.  The Taizé community is known worldwide for their worship life and liturgical music.  The music is simple, with refrains that are repeated many times, often sung in harmony by whoever has gathered for worship.  Taizé music is in many languages.  It seems to be a place at which national boundaries cease to divide.

The music felt like a life preserver to me this evening.  It is my hope that I will find accessible Taizé resources to add some more disciplined regular times of spiritual refreshment in my days.  I suspect it might help raise the quality of care for Mary Ann and the quality of life for both of us.

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.

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.

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Tonight I am anticipating a three day retreat from Caregiving.  It will begin as soon as the car is loaded and on the road in the morning.  I will travel between five and six hours on the Interstate to get to a place that has provided respite and renewal to me off and on for almost twenty years.  

I will tell you some of things I look for in a Retreat, some of the things I do, but what is more important is for each of you who serves as a Caregiver to find a place that renews your spirit.   What provides you with respite and renewal is likely to be much different from what does it for me.

The place I will go is called St. Francis of the Woods Spiritual Renewal Center.  To go there requires no particular Spirituality.   There I will find complete solitude.  The cottages are very comfortable and very few.  That there are very few cottages is the reason for my expectation of solitude.  There will be no agenda to follow, no meal times to honor.  It will be in complete contrast to the Caregiving Role that is done entirely in response to someone else’s needs. 

There is a beautiful, ornate, Orthodox chapel there for those who appreciate that environment.  There is a library filled with books intended for those seeking renewal.  St. Francis includes a five hundred acre working farm.  There are pastures and woods, a chicken house filled with clucking hens and crowing roosters.  Fresh eggs can be purchased — the honor system – get a dozen from the fridge and leave the money in the basket.  There are paths carved out in the woods, with the occasional bench.  There are areas with no paths, filled with wildlife to be surprised as you come into sight.  There is a small remote field a decent hike’s distance across a trickle of a creek, maybe a mile and a half’s walk away from any of the cottages.  It is surrounded by woods with only one path for a tractor to reach it for any planting or cutting of hay.  That is the spot that touches my spirit and renews me. 

The drive there is a vital part of the experience.  The music CD’s are carefully chosen to help me transition from activities and attitudes that fill my days at home (and at work when I was still working full time).  That time allows me to be prepared for the hoped for renewal time on the Retreat.   The return trip is often a powerful time, since, with an uncluttered and rested mind, solutions to problems often emerge, decisions can be made with clarity.  For me,  a two night stay with travel there on the first day and travel back on the third day is the most effective pattern for renewal.

On the Retreat itself I will carry with me a couple of books that provide me with the spiritual tools I need to stay grounded and grow in learning how to quiet myself so that I am receptive to renewal.  I will bring a couple of books on Quantum Physics, since, while I know very little and struggle to understand them, I find them to enlarge my perspective in a way that excites my spirit.   I will take with me some good binoculars and a spotting scope given to me by my Son.  I will engage to the fullest extent my senses will allow, every dimension of that holy space. 

I will do some journaling periodically as I sit on the three legged stool that I strap to my backpack, or one of the benches if it happens to be in the right place at the right time.  The journaling tends to take me to a place of perspective on my life’s journey.  When I am on retreat, I have a chance to move out of reactive mode.   I can rediscover my center of being as a single individual in a magnificently huge universe.  I can look from a distance at my relationship with Mary Ann, with the caregiving that is a part of our relationship.  Without fail, my love and commitment to her has been renewed on those retreats, the spiritual strength that sustains me has been renewed and enlarged. 

Self-care is not simply an optional task among the many that come with life’s challenges, especially for those charged with the care of another human being.  Self-care is what allows the possibility of being of any use to anyone else, especially the One for whom you care. 

I suspect the question that first comes to mind for many Caregivers is how on earth it is possible to find time to go on a retreat.  Who will care for my Loved One while I am gone?   How will I afford it?  It will only happen if you accept that your self-care has priority.  If something is needed badly enough, we find a way to do it.  We need to eat.   We find a way to do it. 

I went on these retreats when I was working full time and caring for Mary Ann full time when not away from the house at work.  There were some Volunteers who developed the confidence to be a part of the crew who stayed with her when I was gone.  Our daughter and her family chose to move to town to help us out for a couple of years.  During that time, she took one or both of the nights I was gone.  My daughter and her family have driven ten hours to visit this week, encouraging me to take this three day Retreat during part of their stay.

There  are some local organizations that for a charge (one charges $150) will come overnight for a twelve hour shift.  There is a local facility that will provide residential care for an overnight, again, for a charge.  When I began going to St. Francis, the suggested donation was $6.00 per night.  Now it is up to almost half the cost of a night in a motel — a bargain to say the least. 

Your task is to determine what it is that would allow you to disengage for a time from the stream of demands coming your way, what activity would be renewing to you.  It is not impossible to do.  It may is terribly difficult, but it will never happen unless  you decide it needs to happen, it is worth doing.  Do it once or twice and you will understand why it needs to happen.  Take each obstacle to doing whatever renewal activity would be meaningful one at a time.  Do not allow one of the obstacles to sabotage the whole idea.  Reframe the nature of the retreat if need be.  That may mean finding a B&B an hour away instead, or a friend’s vacation home, or the farm still owned by a family member. 

Self-care is not one option among many for a Caregiver.  It is precisely what is needed to do the very task you are called to do.  Love the One for whom you are caring enough to take care of yourself.

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.