Therapeutic Activities


I have come to think that for all of us, but especially those with chronic, degenerative, life-threatening diseases, very many of our choices, big ones and little ones, can be framed as choices either to live or just fill time until we die.

At the Parkinson’s Support Group meeting while back, there were a number of people present who have had Deep Brain Stimulation surgery (see the June 4th post on this blog for a description of the procedure) to lessen the symptoms of their Parkinson’s.  When I thought about it after the meeting I concluded that those who chose the surgery were choosing life.  They were choosing not to simply bide their time as the disease progressed.  While people don’t die of Parkinson’s, the Disease often in some way plays a significant part in their death.

Of course not every decision we make is on the scale of whether or not to have DBS surgery.  With that said, I have begun to think that we can ask of very many of the decisions we make, are we choosing life, or simply filling time until we die.

I have been wondering lately if in our care giving and receiving mode, we are settling into a routine that is more about waiting and filling empty spaces of time than it is about living meaningfully. Every time we set foot out of the house to eat or shop or go to a public place, a meeting, worship service, to see our kids, to go for a ride, it is a major hassle.  We are always at risk for Mary Ann having some sort of problem that is much more difficult to handle away than at home.

When we eat out, it is often pretty hard to get food from the plate to its intended destination without some of the food taking a side trip to shirt or lap or chair or floor.  Just the logistics of getting to the table to eat in the first place is not always very easy.  When we attended that Parkinson’s meeting, there was unexpected intestinal activity that was pretty tough to deal with in a very inaccessible bathroom while a couple of folks we had enlisted to watch the door waited for what must have seemed like an eternity. Heading out for a drive of any distance can present the same sorts of problems.

It is so much easier to stay home and expand little tasks to fill more time than needed, to expand their importance and create the illusion that they are more satisfying and meaningful than they really are.

It is surprising how hard it can be when making a choice to determine which option is choosing life and which is just filling time.  For Mary Ann, watching television fills a void created by losing the ability to do most of the things she used to do for pleasure. However, watching television is also a very addictive life waster — something just to make the time go by more quickly.

There are times when watching a television program or DVD can be informative, mentally stimulating, very entertaining, refreshing and renewing.  There are also times when the television brings nothing to us, but rather consumes our lives, providing no real nourishment, just empty calories.

After procrastinating for a number of days, when finally we actually did do some flower planting outside, it seemed to be time we were living, not just waiting.  When we push ourselves to commit to something, a trip out, a visit, attending an activity, it is often life-affirming.  The temptation is to find some reason just to stay home, to do something familiar, something that in no way stretches us and stimulates us to live life to the fullest.

It is not as simple as concluding that staying busy is the way to fill our lives with meaning.  Busyness can be as life draining as watching reruns just to make the time go by.  For me, sitting alone, listening to a CD of an interesting piece of music, thinking and processing things mentally, calming my spirit, I find to be life-affirming.  Sitting on the deck, watching clouds and listening to birds is meaningful and productive time.  Quietly reading something that is engaging and mentally stimulating or spiritually nourishing is life-affirming for me.

Choosing to spend time with others is choosing life.  After a few days of talking about doing so, last week we called a couple of friends who, gratefully, were able and willing to say yes to a spontaneous invitation to go for a drive in the country.  The day was beautiful, the scenery was stunning.  We stopped at our favorite potter’s studio.  We stopped for ice cream in a picturesque small town in the area.  We tasted wine at a winery outlet, very tasty wine. (I know, ice cream and wine??)

Mary Ann chose to attend a salad luncheon with friends at church last Wednesday. While it was not expected of her, she insisted that we bring a salad – another foray into the kitchen.  Friends invited us to come down the block one evening for cookies and conversation.  The time together was not only entertaining but nourishing to some meaningful relationships.

It is very tempting to avoid the hassles and just stay home.  What was the catch phrase in those old Nike commercials: Just do it!  We have committed to a ten hour trip to Northern Illinois for a family celebration at the end of July.  From there we bring our oldest Granddaughter with us to Kentucky to spend time with our Daughter and her family.  We just received another wonderful thank you gift from the congregation I served. We provided a free place for the new Pastor to stay for a few months, waiting for his family to be able to move here.  The gift is a trip to our very favorite Bed and Breakfast in Arkansas — another long trip, but exceptionally life-affirming.

Choosing life is not always done in huge life-changing deciaions. Choosing life is often done one tiny decision at a time.  The cumulative effect of those little decisions determines whether we are living or just waiting until life is over.

Whether the choice is to undergo major surgery to provide hope of an improved quality of life, or to get out of the house and head down the block for cookies and conversation with friends, the choice is ours to make.  Either we choose life or just wait until it is over.

When given a choice, my hope is to have the courage to choose the option that is life-affirming rather than life-wasting, and, as the Serenity Prayer says, to have the wisdom to know the difference.

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.

I tried again tonight.  I am resorting to chemical warfare, natural, organic, but nonetheless chemical warfare.  The weapons: blood meal and Cayenne pepper.  I am determined to have sweet potato vines growing in the large pot on the deck, and the squirrels are determined that it will not be so. 

When we first moved in there were no squirrels.  I longed for them.  When the first one came, I fed it.  Now there are a cluster of them.  I still feed them.  That makes it even more annoying.  The ungrateful buggers.  I have taken care of them day in and day out and this is my thanks — eating my sweet potato vines?

That is not all.  I planted some Salvia in the barrel — four plants.  I caught one eating a salad of Salvia leaves.  More than that, chewing off the stems at the surface of the dirt.  If that is not enough, later I caught the squrrel as he was chewing off the Salvia plants that were still in the flats, awaiting transplantation to small circle of plants in front of the house.  I managed to salvage four plants for the front.  They are still growing a week later.  The squirrels seem not to venture into the front yard. 

I have a theory about the squirrels specifically choosing to eat the Salvia.  I mentioned my plight in the Wednesday morning group that meets on the deck.  One member remembered her daughter mentioning that kids sometimes smoke Salvia to get high.  Apparently a strain of Salvia is a hallucinogen.  I decided that the squirrels are partying on my Salvia!  I haven’t noticed any unusual behavior, but then who knows what  behavior is normal for a squirrel.  Actually, the strain of Salvia kids have smoked has been illegal in Kansas for the last few years. 

I have now been assured by two people that blood meal will repel squirrels  and by another person that the vines will absorb the Cayenne pepper — one bite sending the squirrel screaming in agony.  For some reason the movie Caddyshack, Bill Murray and Gophers just popped into my mind. 

With Mary Ann supervising, in the last week or so, I have planted three large pots on the deck, an area behind the house, a barrel near the front door, a small area in front of the house and will soon plant a vining Petunia on a berm next to the house.  There is very little rhyme or reason to the plants and flowers picked and only limited aesthetic value, but at least they are planted. 

Since our circumstances tie us to the house much of the time, it seems worth the effort to work at creating a nurturing environment.  Flowers and plants are a part of  creating that environment. 

One of the activities that creates interest at home for me is creating a friendly presence for the birds.  There are eleven feeders of one sort or another attached in some way to our little deck.  In addition there are a couple of ground feeding areas in the back yard near a tree behind the deck.  There is a heated bird bath attached to the rail.  I have just hung a new little meal worm feeder outside my office window at the front of the house.  I am still in the process of waiting in hopes that a neighborhood wren will discover it.  We have a speaker in the dining room that picks up bird sounds from the deck area through a microphone just outside the window. 

We have planted trees in the back to provide shade and cover for the birds and squirrels and aesthetic variety.  The wildlife that has wandered through includes a couple of Mallard Ducks who regularly come by to eat, a possum seen once foraging in the feeding areas under the tree, last night a brazen Raccoon stopped by to climb on the deck and munch seed from one of the bird feeders.  I have seen his paw prints more than once in the bottom of the birdbath.  Rabbits hang out under the deck and often join the others at the feeding areas. 

We live in a maintenance free cluster of townhomes with multiple subdivisions in all directions.  We have created such a welcoming space for wildlife because I find their presence to be nurturing to my mental health.  Mary Ann enjoys it some, but mostly just tolerates my penchant for feeding the fauna.   

Next week ABC Ponds will begin work on the pondless waterfall that will be constructed behind the deck.  What precipitated the idea was the need to deal with a problem with standing water behind the houses in our area.  Sump pumps cycle constantly emptying into the area.  The clay will not absorb rain water when comes.  What will be created is essentially a manmade wetland with a deep reservoire filled with natural filtering material, covered with perennial native marginal plants.  The water will be pumped from the base of the well to the waterfall.  Kansas State University has been using this process in recent years to deal with run off. 

The environment I have sought to create is not just a novelty.  It is an essential element in my survival here.  The television provides entertainment for Mary Ann.  I watch my share of it but find it to frustrate my sense of well-being rather than nurture it. 

Many a day we are not able to set foot off the property due to the complexities of Mary Ann’s physical needs.  There need to be nurturing elements in our environment. 

Inside the house are paintings, a metal wall sculpture, antiques, crystal and china and ceramics to add quality and variety to the interior of our home.  A few  years ago I commissioned two members of the congregation, a cabinet maker and an artist to create a small worship center that sits in my office, providing a focal point for meditation.  We have a sound system in the living room that provides a good quality of sound for the occasional time after Mary Ann is in bed for just listening to music that feeds my spirit. 

If I will be a healthy and able Caregiver for Mary Ann, there needs to be regular access to that which nourishes my well-being.  I am then better able to provide for her as nurturing and safe and healthy an environment as possible.  Rather than allowing the four walls of our little living space to be confining and boring, empty of the richness we both need to maintain our emotional health, we have committed our time and resources to creating a nurturing space in which we can live meaningfully. 

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.

While the owners would not appreciate it, I hope no one purchases a lot and builds a home in the River Hill subdivision.  That undeveloped subdivision provided the setting for a wonderful meal of soul food tonight.

All of us need nourishment for the deepest part of ourselves, the place from which we draw strength for traveling through days that are sometimes filled with too much to do.  Often much of what fills our days does not nourish our souls but instead drains the life and strength and stamina from us.

While my days are not so full as they have been in the past, and Mary Ann’s and my time together is going pretty well, the need for feeding my soul remains.  Tonight it was fed.

Twila came to stay with Mary Ann.  They seemed to enjoy their time together.  There was progress made on a novel — a different one from Elaine’s Sunday morning book.  I headed out to that spot high on a hill, above and behind a new shopping area.  There is a new street that has been constructed, and I am sure the area has been platted with very expensive lots.  No one has bought a lot and built yet.

The spot has trees on both sides bordering the field of varied and colorful weeds that will probably one day be lawns and houses.  The view to the west is beyond description.  There are trees and fields and low rolling hills that extend all the way to the horizon many miles away.  A little area of the Kansas River is visible.  The railroad tracks run along side the tracks. Trains can often be seen and whistles heard as they move along those tracks.

Today, while Mary Ann was looking for a couple of books at the library, I noticed the shelves containing the Classical Music CD’s.  I picked a couple almost at random.  One is called “The Prayer Cycle” by Jonathan Elias.  Actually it both confused and intrigued me when I looked at it more carefully.  It is listed as a choral symphony in nine movements.  The confusing part was that those listed as performers included Alanis Morissette, James Taylor, the American Boychoir, John Williams, Linda Ronstadt, The English Chamber Orchestra and Chorus, and a number of people with names suggesting a variety of nationalities.

To describe the experience I need to borrow a Greek word.  Maybe having to take seven years of Greek is paying off.  The word I am borrowing is the word for compassion. The Greek word for compassion transliterated into English is splangknidzomai.  The first part of the word, splangkna, means viscera, innards, guts.  That is where the Ancient Greeks understood deep feelings to reside. Given the size of the antacid business, I suspect the Ancient Greeks were right. Tonight, the music on that CD combined with the sounds and sights of that remarkable setting to reach into the depths of my splangkna to stir and lift my spirit.

The sun was still a couple of hours from setting when I looked at it hanging in the west.  There were some thin and hazy clouds muting its brightness.  As it moved lower in the sky, it became less and less visible.  The cloudiness had no clear boundary, except that it sort of melted into a mist in the trees on the horizon.  There was just a powerful calming in the view from that hill.

The trees on one side in particular were quaking in the wind providing more power to the calming effect.  They were not the Quaking Aspen of Colorado, but another member of the family.  There were, of course, birds to be seen and heard.  One tiny bird sang a wonderfully complex melody so loudly that I could hear it over the music on the CD.

There was a hawk sailing around for a bit.  I am convinced that the hawk was as exhilarated by the currents under his wings lifting him as I was by the sights and sounds on that hill lifting my spirit.  There were some swallows that appeared to be dancing with one another in midair.  I realized that the dance was their way of catching food.  Without the dance, they would die.  I felt as if I was being surrounded by metaphors one after another filled with clues for living meaningfully.

One part of the scene was the intrusion of the relentless sound of tires on the pavement of a nearby Interstate.  That sound actually seemed to help balance the exhiliration of my lifted spirit with the practical realities of my daily experiences.

Then there was the music.  The music blended choral, instrumental and chant together in the same pieces.  The chant was odd.  It was certainly not Gregorian Chant.  One semester in the Seminary, I had a class in the Solemnes style of Gregorian Chant.  For three years I sang in a small chant ensemble that sang at weekly chapel services.  While this was not Gregorian, it was chant.  The chant and choral music was sung in a variety of languages, Hungarian, Mali, Swahili, Dwala, Tibetan, German, French, Urdu, Latin, English, Italian, Hebrew, and Spanish.  For some reason I had the odd feeling that this chant was a reverent, multilingual, classical style of Rap.

I was struck by the way rich chords and complex dissonances contrasted one another, each more beautiful because it was next to the other.  In the moments of silence between phrases in the music, the birds and the wind in the trees and the sounds of traffic folded more prominently into the experience.

With this feeble attempt at translating the sights and sounds of a moving, spirit lifting experience into words, I intend to say that a couple of hours well spent can feed the soul of a Caregiver whose days may be filled with activities that do not necessarily lift the spirit.  For me, it is the soul feeding experiences that help bring meaning to the daily tasks.  With a well-fed soul, the Caregiving itself can become soul food.

Eat heartily!

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.

Volunteer Elaine has one rule for us: “Don’t read the book between my visits!”  She doesn’t want to miss any part of the story.  Elaine comes on a Sunday morning once a month for about three hours.  She reads from a novel she and Mary Ann have chosen.  This morning, she took Mary Ann in the wheelchair to the neighborhood vest pocket park a little over a block away.  The two of them enjoyed the flowers folks had planted in the back yards that border the park.  There were a couple of pairs of Bluebirds that entertained them.  When they returned, Elaine started reading.  The next Sunday morning that she comes, she will go on with the next chapter or two in the story.

Each of the Volunteers brings something different to the visit.  Sometimes just watching television with Mary Ann is what is needed.  Other times Volunteers will keep Mary Ann abreast of their own lives and families.  Some do a little ironing (or a lot).  Some will bring food and maybe make the meal while they are here.  All of them expand Mary Ann’s world.

There are times a Volunteer will come while I remain at the house, doing a variety of tasks, sometimes outside, more often in the office at the computer.  That option is especially helpful for Volunteers who might be new to the role, needing to get accustomed to helping Mary Ann, or uncomfortable with or physically unable to do some of the caregiving duties.

Of course there is a benefit for the Caregiver when there is a Volunteer.  As a retired pastor still worshiping at the church from which I retired, I have chosen to keep a low profile.  The church has an Evening Service, one that I started about a decade ago.  It has a comparatively small attendance, and the service is a little quieter and more contemplative than the morning services at which there are lots of folks of all ages coming and going.  The Evening Service is a friendlier setting for those with handicaps since there are fewer people to move through, fewer energetic little ones zipping here and there.

The Evening Service is the one that we have chosen to attend.  When there is a Volunteer available I use the Sunday morning time for solitude.  I usually drive to a lake about twenty minutes from here.  The lake is large and beautiful.  I usually find a spot there to do some devotional reading and just look around at the sights.  Today, after the time at the lake, I drove beneath the dam to a marsh that has been preserved for wildlife.  As I walked along a path beside the marsh, looking at and listening to the birds, as I listened to the occasional frog, watched the dragon flies, listened to the wind blowing through the tall grass, it dawned on me why their was such a calm and comfortable sensation washing over me.

When I was growing up, we lived two blocks from a swamp.  That swamp was my retreat.  I spent hours there, at least until my Mother figured out that I was at the swamp again.  I always went back, no matter how often I got scolded.  I still remember the willow switch stinging the back of my bare legs (unfortunately I was wearing shorts) with each step as we walked back from the swamp after Mom came down to get me.

The sound of Red-winged Blackbirds singing always takes me back to those idyllic days.  I am there again with frogs and cattails and tadpoles and water bugs, with the wind blowing through the weeds.

A few hours away is an essential element in healthy caregiving.  I need those times of solitude, times during which I have no responsibilities.  I stay as long as I choose in one spot and when I feel like doing so, move to another.  This morning I walked very slowly and soaked in every dimension of the experience.  The Great Blue Herons, Meadowlarks, Tree Swallows, Barn Swallows, Orioles, the sounds of the occasional frog, the wind in the nearby Poplar Trees (the greatest for making wonderful sounds when the wind is blowing), all got the time and attention they were due.  Each time I would stop for a while, more variety of sights and sounds would enter my awareness.  They were there before, but until I quieted myself and relaxed, I wasn’t aware of them.  Civilization made itself known through the sound of four-wheelers in an area made for them not far from the marsh.

Mary Ann and I each got a time this morning that was refreshing and renewing and entertaining.  After I came home there were some problems to deal with due to the fainting issue making its presence known.  After we got through that, I made lunch. Yes, I actually cooked!  It is another of those recipes so simple a caveman could do it (sorry Geico guys).

The recipe:  I opened a package of pre-cooked bratwurst sausages and browned them in some oil in a large pan.  After setting them aside I put a large quantity of onions (cut into fairly large pieces) and browned them in the pan with the drippings from the brats.  Then came a couple of spoonfuls of garlic pieces from a jar.  After that I added lots of slices of apples.  After cooking all that for a while with the lid on so that the apples cooked through and softened, I put the brats back in, opened a can of Bavarian style sauerkraut over the top and let the flavors mix and the liquid from the apples and kraut cook down a bit. On occasion I have added a little left over white wine into the pan to deglaze it.  I do that just because it sounds cool.  I guess it also adds a little sweetness. By the way, there is no need to add any seasonings to this dish.  The apples and onions and Bavarian style sauerkraut add plenty of sweetness, and the brats and sauerkraut add the saltiness and lots of flavor.

What made me proud today was that Mary Ann actually ate it and seemed to enjoy it!

After Mary Ann napped, we headed off to the Evening Service.  That was a corporate worship experience for us, and a chance for Mary Ann to get out into a setting that allowed some social interaction.  She did struggle a bit during the service.  There was one fainting spell, but it passed quickly.  We just did a little more sitting than usual during the service.

Getting out with people is another important need both for the Caregiver and Receiver.  It is tempting to stay isolated at home.  While that may be easier, in the long run it will take a heavy toll on both.

We picked up a strawberry shake from Sonic for Mary Ann on the way home.  I made myself a tasty peanut butter and jelly (Blackberry Jam) toast, we watched a little television, I watered the flowers and now I am writing this while Mary Ann is secure in bed — I can see her on the little seven inch baby monitor screen.

This is hardly exciting reading, but it is an account of some of the practical tools  that allow us to travel this journey with Parkinson’s in a way that doesn’t steal from us the quality of our lives together.

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.

Traveling fools that we are, we are heading out again tomorrow morning.  Having just returned from Kentucky last Monday, the preparations seem to be going more smoothly than last time.

This time we are heading for the most beautiful Bed and Breakfast that could be imagined.  There are ten rooms (one especially for handicapped), all of them facing a beautiful arm of Lake Hamilton in Hot Springs, Arkansas.  Each room has its own patio or balcony.  There is a library, a reading room (both with fireplaces), a heated and cooled sun porch with games and puzzles and areas for conversation.  The decor is elegant without being pretentious.  There are many watercolors by local artists, one artist in particular.  The quality of the art is impeccable.  There is a garden that spills down the terrace toward the lake.  It is laced with paths and a stream divided by waterfalls, the water from a wonderfully gurgling fountain at the edge of the patio outside the dining room.  The garden is filled with trees and blooming shrubs and Azaleas.

The Owners and Staff are welcoming and engaging.  The breakfast is, of course, many courses, all tasty and what I would call comfortable gourmet.  I just made up that descriptor, but it is the only way of saying it that makes sense to me.  The 4:00pm wine and cheese and freshly baked cookies, sometimes fruit, is a relaxed time for conversation around the serving table or for eating on the patio listening to the fountain and the birds that visit the multiple feeders.  By the way Chocolate Wednesday is a special treat!

What I just described I am remembering from a visit last October.  That trip was a retirement gift from the Congregation that has meant so much to us in these last dozen or so years.  Since one of the owners of the Bed and Breakfast is an active Pastor, there are special rates for those of us in the business, making this trip possible for a pastor living on a pension.  This B&B is called Lookout Point – Lakeside Inn, www.lookoutpointinn.com/

I am excited about this trip.  Part of the reality of Caregiving is that anything can happen in the next few days as we make this trip.  Tomorrow something may emerge that makes it impossible to go.  We may have any number of problems as we travel.  None of that dampens my enthusiasm.  I cannot know what will happen, so I will enjoy what I can, while I can.  Mary Ann enjoyed our last visit and is motivated to make it work.

As always the preparations are many.  Choosing clothes to take along is a special challenge.  As is the case each morning, I gather as many options for clothing as I can hold and carry them to her as she sits on the edge of the bed.  Often it takes what seems to be an interminable amount of time for her to work back and forth through the clothes as the hangers dig into my fingers.  Deciding on clothes for six days of travel is an exhausting experience for the one holding the clothes.

There are pills to be prepared and put in the plastic seven day, four section each day, pill holder.  Then the bottles of pills need to be along in case anything happens to the ones in the daily container.  There are meds for the two skin cancers that have just been removed so that they can be treated properly to enhance the healing process.  One takes Polysporin and a band-aid each day, the other needs to be dabbed with Peroxide three or four times a day.  The Exelon patches need to come along. The black case with liquid band-aids to deal with the Plavix thinned blood if there is a cut comes along.  There are straws and bandages and wipes and adhesive tape, boxes and tubes and containers filled with all sorts of things that have been needed at one time or another in the past.  All are contained in that black case.

There is the booklet with all the medical information including a list of medications, insurance information, doctors names and phone numbers, her living will.  There are snacks to be gathered for the trip.  There are paper towels for the inevitable spills as we travel.  Both wheel chair and transfer chairs will come along.  We may add the bedside commode if there is room. Those who are in the stage of life that includes young children know how hard it is to gather all that is needed so that the odds of the trip going well are increased.  There are never any guarantees about how it will go, no matter how many preparations are made.

Every time we do this, the usual questions come to mind again.  Should we be traveling away from the security of home and familiar medical resources?  Is it more trouble than it is worth?  What if something happens!!

I guess we have decided that if something happens, it will happen.  We can’t control that.  We can sit at home and wait for it to happen so that if it does, we will be close to the familiar.  We are simply choosing not to sit and wait.  Our reasoning is obvious.  We have what appears to be a limited time remaining with enough mobility to even attempt traveling.  We will do it while we can and not do it when we can’t.  We think we still can, so off we go!

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We made it!!!  Last evening we returned from Kentucky traveling 10.5 hours — under overcast skies dropping periodic showers on us as we traveled — all 10.5 hours.  Then, two miles from our home, the sun broke through.   Traveling can be wonderful, thrilling, entertaining, full of comfort with family that is loved very much, and still, coming home feels good. 

Then there was the mail to be opened.  Two pieces of mail in particular dampened my enthusiasm to be home more than the showers had dampened our travel that day.   Both were Caregiver irritants.  The first was another in the seemingly endless array of medical insurance claims denied because someone had a wrong code or a wrong insurance ID number or hadn’t communicated information in the left hand to the right hand or because this Caregiver didn’t get the right information to the right person at the right time.

The second piece of mail that dampened my spirits was what appeared to be a summons for Mary Ann to serve on a jury.  The form to be filled out looked as if someone had printed some sort of printer test page with bar codes and fonts both tiny and bold. 

Now, I am a reasonably intelligent person.  I graduated eighth out of three hundred twenty-five in my high school class.  I tied one other student with the highest numbers on my college entrance exams.  I got a 31 composite score on my ACT and a 34 (out of 36) on the quantitative portion of the test.  I spent eight years in college and seminary, learning to read Hebrew, Greek, Latin and German.  I went back to school and got a Doctor of Ministry degree after ten years of working.  Why am I so intimidated by health insurance forms and jury summons and keeping track of pills in their little plastic holders and making sure that prescriptions are obtained or renewed before the pills run out. 

Why is it that little things seem to have so much power to ruffle my feathers.  So the person who got my order for two pieces of white meat sent me home with a thigh and a wing instead of a breast and a wing.  I actually called and complained (got a free meal out of it).  Things that are of no account in the grand scheme of the universe seem so huge and frustrating.  I have dealt with tough issues hundreds of times over the years, helped families through major crises, worked through substantial budgets, been through crises myself more than once.  Why should I now be undone by chocolate squished in Mary Ann’s hands and on clothes that can easily be Spray and Washed. 

Whether it is verifiable scientifically or not, I am convinced that people have just so much coping capability.   As Caregivers, we live in a chaotic world in which things can change in moments.  We have absolutely nothing to say about what happens to us.  We can do everything it makes sense to do so that there will be a certain outcome.  We actually have no say in what outcome results.  Every time something happens that throws that truth in our face, every time events take an unforseen turn, we are forced to use up some of our coping skills. 

Any of us who have been caring for a Loved One for some time understands that we have pretty much nothing to say about what happens.  Parkinson’s in particular is unpredictable in how it will present itself and how it will proceed.  Lewy Body Dementia is especially insidious in that dramatic changes can take place for the better or for the worse (mostly the worse) at any time, at any pace.  Other diseases have different patterns but no less power to use up a Caregiver’s coping ability. 

So, what can we do in the face of the harsh reality that we are out of control, we are completely powerless to order our world?  We live in total chaos. 

If it is little things that can now undo us, since we have used up all our coping ability on the big things, how about trying to beat this powerlessness at its own game?  If little things can undo us, why not use little things to create some semblance of order in our lives?  Why not create little pockets of control in our lives to suggest to our insides that we actually can survive the chaos — we can refuse to give it the power to unravel us completely.

Here is how I fight the chaos, the feelings of powerlessness.  This will sound stupid and silly, but it helps me survive.  I clean the commode every morning.  I make the beds and fold the corners so that they will not trip Mary Ann when she walks around the foot of the bed.  I fold the chuk that was under the commode, move the clean commode to the foot of my bed.  I roll the lift from the living room where it spends the night into the bedroom to the foot of my bed.  I get Mary Ann’s pills which, every Saturday, I put in the little compartments in which they always go.  I set the pill timers.  I change Mary Ann’s night time pad (like Depends) for a day time pad (each holds a different quantity of liquid).  I get her dressed, velcro shoes for when we are out, making bathroom changes of pads go more quickly.  And so it goes. 

If we can’t control the big things, we can control some things.  When people came in struggling with mild depression (I referred those in deep depression), one suggestion I made was to make a list of just two or three simple things that they could easily do, tiny things.  I suggested making the list and checking off those silly little items when they were done.  Depression seems to come when we have the sensation that we are powerless to do anything about our situation.  My goal was to help them re-train their thinking, their gut, so that some small sense of control returned.

Most people who talked with me about problems that were overwhelming them heard the same suggestion.  Make a list of all the pieces of the problem that seems so overwhelming — usually there were multiple problems converging.  Then take the list and divide it into two lists. In one column, put the things you don’t have the power to control or change.  In the other column list the things that you can actually affect in some way.   The first list for those whose view of reality gives this weight, is the prayer list.  For those who don’t find that a meaningful option, it is the list of things to take off your plate of things to do.  Any energy spent on them is wasted.  If you had the power to change them you would have long ago.  Let them go! 

The second list is the “to do” list.  Take all the time and energy that has been wasted on things over which you have no control, get off your butt and do one of the things on the second list.  If it is too big to do, do something, anything, any part of the thing that is too big. 

Yes, I am a list maker.  Yes, I have put something on the list after I did it so that I could check it off.  Do whatever works for you to help you find some level of control in the face of things over which you have no control. 

Caregivers feel powerless because we are powerless — but not completely powerless.  Our job is to figure out what we can and can’t do, then do what we can and let go of what we can’t.  What is surpising to me is how often it turns out that the little things I could actually do did make a difference — more difference than I thought possible.  

 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.

A comment on a post I wrote a couple of nights ago raised an issue that is significant for many Caregivers who are doing full time caregiving all day long every day.  The writer mentioned that she often uses the time after her Loved One goes to bed to try communicate with others, since the opportunity for adult conversation is limited.

For many of us conversation that was a routine part of our daily lives with our Loved One and with others has pretty much ceased.  Especially those caring for someone with a form of Dementia find it tough to converse meaningfully.  A number of recent emails from others who are caring for spouses with Dementia have included reflections on the challenge of dealing with the lack of meaningful conversation and the loneliness that sometimes settles in.

Until I retired a number of months ago, I was active in a profession that involved lots of meetings, visiting with people, counseling folks struggling with problems, speaking in front of groups, and many hours each day communicating electronically (email).  All of that came to a halt pretty much the day I retired.  Emails ceased, phone calls stopped, meetings ended, there were no more visits to be made, no more speaking in front of groups.

Now there is one person stuck with me twenty-four hours a day, seven days a week, someone who has never really been a talker and now after twenty-two years of Parkinson’s has taken its toll finds great difficulty getting thoughts into words and sustaining conversation.  She has struggled with the challenge of having me there constantly, so I can hardly complain.  She tired long ago of listening to my voice as it drones on and on.

One comment in an email I read tonight provided an image of the Caregiver in need of communication.  She mentioned that when she was at the dentist getting her teeth cleaned, every time the Hygienist took her hands out of her mouth she started talking immediately, not stopping until the instruments were back in her mouth.

I find myself starting conversations in with strangers in line at the store, or making conversation with the person at the register. Anyone who dares cross our threshold is likely to be fully engaged in conversation by the time their second foot has landed inside.

Anyone who reads this blog has certainly noticed the length of the posts.  When I write I imagine that there are people actually reading this with whom I am having conversation.

Living in a world of silence other than the sound of the television, can certainly produce a deep sense of loneliness.  I suspect there are lonely Caregivers by the tens of thousands out there.  It seems to me very likely that lots of them, probably a majority, are not computer users who have the option of going online and relating to others regularly. If the Caregivers are lonely, imagine how lonely and bored those who need the care must be.

There are no simple solutions to the loneliness and isolation, the boredom and lack of conversation that comes with the Caregiver and Carereceiver territory.  For me the battle with loneliness starts with developing a rich inner life that experiences each moment fully and fills my thoughts with wonderful images from my environment, from reading, from the lives of others I have encountered, from my own story, from a head filled with unfinished business, from intellectual and spiritual curiousity.

While I have never been a writer, the exercise of writing these posts is safisfying and fulfilling.  Reading emails and occasionally responding to those who are caring for spouses with Lewy Body Dementia is engaging.  When Volunteers come to stay with Mary Ann to give her a break from my constant presence, it takes me a long time to get out the door as I engage them in conversation.  I find myself on the phone with brothers and sisters more often than ever before in my life.  Trips to the coffee shop to get a cup of coffee take a little longer. When we attend the Parkinson’s Support Group meetings, I am not shy in speaking up.

Since I am not good at all at small talk, I know very little about sports and I am completely uninterested in debating politics, conversation just for the sake of talking is not all that satisfying.  I suppose I can talk about the weather with the best.  I do have a genuine interest in people’s stories, so given the opportunity, I will find out what you do and what you like and dislike about it, where you have lived, what challenges you have faced and how you are coping with them.  The problem when homebound by the Caregiving task, or the chronic illness, is that the opportunities for such meaningful conversations are limited.

While it helps, electronic communication is not fully satisfying to me since I thrive on the non-verbal elements of communication as well as the actual words themselves. Getting out of the house with the one for whom you are caring is worth the effort.  Go anywhere.  Do anything.  Put yourselves out there where the chance for human interaction and verbal interchange is possible.

Every job has its good points and its bad points.  The trick is to “accentuate the positive and eliminate the negative” as the lyrics to an old song say.  Celebrate what is good that the Caregiving experience brings into your life.  Refuse to give the negative more power than it is due in ruling, in defining your life. I know that is far easier said than done.

Caregiver loneliness — Are you?  What are you doing about it?  What works for you?

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.

I am writing this post at my Daughter and Son-in-Law’s computer after driving for eleven hours yesterday to get here.  The word “disincentive” has come to be a regular in my vocabulary.  The disincentives to traveling with someone who needs lots of care are legion.

There is a powerful ambivalence that comes as the trip nears.  Memories of struggles on past trips loom.  There was the trip to that Elderhostel held in Tucson, Arizona one winter.  We flew since the drive would have been a couple of long days.  In my mind, the air quality on the plane brought it on.  Four days later I called the children to fly in for what was thought could be Mary Ann’s last night.  She recovered.  Nonetheless, that memory brings to mind the distinct possibility of having problems away from home.   A strange and unfamiliar hospital, new doctors, the communication of a complex of illnesses about which records lie a thousand miles away, the usual support system unavailable all compound the stress felt by the Caregiver.

Memories of driving for miles trying to find a one-holer, a single-user bathroom, or searching for someone willing to guard the multi-stall bathroom while the two of you spend what seems like an eternity in the restroom, those memories are firmly entrenched and surface immediately at the first thought of heading off on another trip.

I think most of us who are full time Caregivers have worked hard at developing routines that help us anticipate and deal with the many daily struggles that come with the territory.  We have found what works.  We have the tools handy in the places we will need them.  We know to whom to turn for what.  When we are in another place, routines no longer in place, everything is harder.  What we would have taken in stride at home becomes a major challenge.  There is added stress due to the increased vigilance demanded by a new environment filled with the unexpected.

The destination of our travel may not be user friendly for those with physical limitations.  If we are staying in a home with family or friends, the chances are there will not be all the accommodations we have provided at home as we have worked at making it more accessible over the years.  As Caregivers we have all come to realize how easily a few steps or a curb or a gravel drive or cramped quarters in a bathroom or a low toilet stool or any number of seemingly minor challenges can become major barriers.

Eating out in public places during the travel and, perhaps, at the destination is not a time to relax and converse and rest from the trip.  Finding a spot to park, getting the wheel chair out and through the doors of what is usually an air lock arrangement, two sets of doors with a small space in between sets the tone for the mealtime.  Figuring out what to order, dealing with the logistics of finding a table and getting the food to it in a fast food restaurant are more difficult that would be imagined.   Then, unfortunately, I get embarrassed when the food as it is being eaten ends up in a mess on the table, lap and floor.  I consider it my job to leave the table as I found it.

The disincentives to travel are legion.  The challenge is to put the disincentives in perspective when deciding whether or not to travel.  Mary Ann is less conscious of the disincentives.   She does not embarrass as easily as I do.  She seems less conscious of the difficulties we encounter.  I assume that part of the reason for that is that I am the one who does the physical tasks associated with getting her needs met.

There are incentives to traveling.  This trip brings us to two of our Granddaughters.  That trumps pretty much all of the disincentives for traveling here.  Traveling gets us out of those same few rooms in which we are spending our whole lives.   Traveling gets us away from one more Law and Order episode, Spaghetti Western, session of self-help on Oprah.  Traveling gets us in contact with real, live, human beings, able to converse with us.  Traveling exposes us to the beauty that surrounds us but is out of sight because it is on the other side of the houses surrounding ours.

We have worked at determining where the best bathrooms (single user) are when traveling.  They include Subways, Taco Bells, newer Casey’s General Stores, smaller convenience stores, Arbys,  BP station (if there is not an attached fast food restaurant).  Those places don’t always have a bathroom suited to our needs, but often do.  We have learned what foods are more and less challenging to handle.  We have an old catalog case filled with first aid supplies, straws, wipes, anything we can think of that we might need, but might not be readily available.  We grab that case every time we hit the road for an overnight.

You remember that often repeated quote attributed to someone who is looking back on life regretting not what he did but rather what he did not do.  There is only so much time left for any of us.  With a chronic illness in the family, mortality is clear.  Whatever we will do yet in our lives needs to be done now if it will be done at all.

Of course we need not to tempt fate and be foolish about what we choose to do.   If quality of life actually is more important that quantity, we do need to stretch the limits a bit and take the risk on traveling.

Shall we travel?  For Caregivers, it is far easier not to.  Logically speaking, the disincentives may seem to outweigh the incentives.  The challenge is to put in healthy perspective both disincentives and incentives.  Weigh them carefully and remember, we don’t have forever, we have now.

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.

It is about 11:40pm local time as I start this post.  It is not unusual for me to be writing until 1am or 1:30am.  Why on earth don’t I start doing this earlier?  Beyond lack of organization of time and self-discipline, there are some reasons built into the task of Caregiving.

First of all, when someone for whom you are caring cannot take care of personal needs or walk very far without falling, every waking moment is bound to the care and protection of your Carereceiver.  As a Caregiver, you are doubling the number of basic tasks associated with a human’s daily needs.  You are living two lives at the same time. 

One of the lives you are living is, of course, your own.  You know what you want and when you want it.  When living someone else’s life also, just discovering what the wants and needs are takes a great deal of attention and mental energy, especially, if that someone has difficulty vocalizing those wants and need. 

When nature calls the one for whom you are caring, he/she may not hear the call until it is too late to make it to the necessary destination.   Mary Ann can be up and off walking to one place or another in seconds.  Often I discover that she has gotten up and headed off by the sound of the thump when she lands on the floor.  It is exhausting to keep attention so tuned as not to miss those moments of need.  I have heard and believe that mental exercise is far more tiring than physical exertion.  The stamina needed to pay attention to someone else’s every move, every need, every want, uses up endless amounts of the Caretaker’s reserves.

One of the consequences of the constancy of the needs is the inability to find time to concentrate on a task that needs more than a few minutes to do.  Writing a post for this Blog cannot happen while Mary Ann is up and moving about.  My time belongs to her all the time she is awake and some of the time she is sleeping.  I suspect that the same is so for most Caregivers. 

In a sense, my day starts when Mary Ann settles in bed.  There are periodic needs during the night, but the general pattern is that the time I can call my own comes between about 9pm and 1am. Now that I am retired, I am able to sleep longer in the morning, assuming Mary Ann is willing and able to sleep later also. 

Before I retired, the pattern was about the same, except that sleeping later in the morning was not as often an option.  Those of you who are working full time and caregiving full time are likely to be exhausted most of the time, especially if you also claim that late night time as your own.  Here is the logic of staying up.  The moment the Caregiver gets up in the morning, assuming the Carereceiver gets up then also, it all starts over again.  Waking up in the morning is waking to intense demands.   To go to bed at the same time the one for whom you are caring does leaves no time just for yourself — just to be one person only.  

Of course this is an unhealthy pattern.  Sleep deprivation has very destructive consequences.  It affects negatively our ability to perform daily tasks effectively and efficiently.  We are hardly at our best.  Coping with little stresses becomes more difficult.  Mole hills actually do become mountans in our mind.  We can become forgetful, irritable, our thought processes can slow.  I need no scientific studies to demonstrate the truth of those conclusions about the impact of too little rest. 

Now comes the time to share wonderful solutions to the problem of Caregiver exhaustion.  If I had this one solved, I would not be writing this post at what now is about 12:20am.  I will offer some of the feeble attempts I have made over the years of dealing with this particular dimension of the Caregiver’s challenge.  For one thing, I structured the week so that I had some long days and some days to sleep in.  It seemed to work better for me to work many hours in one day than normal hours two days.  By the way, I realize that doing so breaks the rules for sleeping well, the ones that say, get up at the same time every day, go to bed at the same time.    Another rule I regularly break is the one that says, no caffeine later in the day.  Caffeine is my drug of choice.  Evening meetings, if I hoped to actually be awake during them, demanded a heavy dose of caffeine through my chosen delivery system, PT’s Coffee (by the way, the best in the nation as far as I am concerned — sorry, Starbuck’s fans). 

On occasion (too rarely), a Volunteer or my daughter would come over and sleep upstairs to care for Mary Ann during the night, while I got a full night’s sleep in the downstairs.  Especially when I was working, those occasional two night retreats would include nights in which I slept ten or twelve hours. 

Had I continued to work much longer, circumstances would have demanded using the local resources I mentioned in last night’s post to provide paid time covered by others so that I could get rest on occasion.  

Since it is now heading for 12:40am, it is apparent that I need counsel from any who happen to read this post and have ideas for how to minimize Caregiver exhaustion.  One possible solution would be to simply stop trying to write posts for this blog any longer.   Two reasons speak against that solution.  One is that I would be likely to just sit in front of the tube flipping between inanities there.  The second is that I find doing this writing very satisfying and energizing.  Anticipating writing adds interest to my days and makes be a better (and more sane) Caregiver.  The processing I do here has had a very positive effect on my ability to reframe sometimes frustrating tasks in ways that allow me to discover meaning in those tasks, at the same time giving my life meaning.  Why so tired?  It is heading for 1:00am now.  All in all, I am willing to endure being tired if it allows me to live meaningfully. 

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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