June 24, 2009

Caregiver’s Plans for Deck Therapy!

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength | Tags: , , , , , , , , , , , , , , , , |
Leave a Comment 

As they swung the pickaxe and wielded shovels trying to dig through the huge roots of a Bald Cypress Tree and the rock hard Kansas clay just below the roots, the heat index reached 111 degrees yesterday.  Three young men sweated and strained, pulling up water soaked sod to get to the roots and the clay. 

In this heat and at my age, it seems much better to watch others work than to join in the digging.  Today the work continued with more digging, with the addition of the job of bringing huge rocks from the truck in the street in front of the house to the back where they now lay until they find their way to their permanent place in what will be a waterfall, a pondless waterfall.  

They had a little walk-behind Bobcat to move the rocks, but the rocks had to be loaded into the bucket and carried from it.  The well is dug, the liner laid out.  Tomorrow the pump will be installed, the filter filled, the rocks arranged, and later, maybe the next day, the native plants put in place. 

There will then be a waterfall flowing into a manmade wetland to provide an aesthetically pleasing solution (hopefully) to an ugly problem with standing water fed by regularly cycling sump pumps of three houses, ours being the middle one.   

We have committed substantial personal resources to this project.  I cannot be sure that the days and weeks and months will confirm it, but my expectation is that the setting on our deck become more of a sanctuary than it already is. 

This little place where we live is our world most of the time.  We are not completely homebound, but we spend the vast majority of our days here.  To put it bluntly, my goal is to keep from going crazy.  I will do Mary Ann no good if I lose my bearings.  The spiritual grounding that provides me with stability is the primary source of equilibrium.  That grounding needs to be sustained.  We have been through enough to confirm that I am not invincible.  It would be stupid of me to think so.  No human is. 

I recognize the need to have times of respite to help keep balanced and maintain the ability to care for Mary Ann’s needs in a way that nurtures her as a whole, complex, vibrant somebody who happens to have Parkinson’s.  I need the respite to be husband rather than a grumpy and reluctant care provider.  

Mary Ann and I are more grateful than we can ever say for the Volunteers and Mary who schedules them.  We recognize Mary to be a very special gift from God to our household.  The Volunteers give both of us time away from each other.  That time away makes our time together better. 

Tonight, Mary Ann enjoyed the company of good friend Barb.  While Barb was with Mary Ann, I ran some errands and spent time in my favorite close by place of respite.  There I encountered the doe that has been there the last few times.  The two wild turkeys returned to feed for a bit.  The view was as good as ever.  The humidity in the air created layers of mist with varying density, giving depth to the plains that extended for miles in front of me.  I encountered a nice young man there, watering some new plantings.  He is the realtor, excited about the open house coming this weekend, an open  house with the purpose of seeking folks to buy the twenty-eight lots that will be filled with homes, thereby eliminating that place of respite. 

For me to be a good care partner to Mary Ann, there need to be accessible places of retreat and respite, places I can be while we are at home together and there is no Volunteer available.  My office with the computer and the worship center is a place of respite.  The A-V monitor allows me to be here while Mary Ann is in bed or in her transfer chair in the living room. 

The deck can be such a respite with a little planning.  It is possible to plug  the monitor into an outlet on the deck.  My hope is that the addition of the waterfall will increase the power of that setting in providing renewal and refreshment.  Without the need to have a Volunteer scheduled so that I can drive to some other place for respite, our little corner of the world can provide more of what is needed to keep our system healthy and functional. 

Meaningful Caregiving will not happen by accident.  Sometimes it takes pickaxes and shovels wielded in 111 degree heat index weather to help create what is needed to nurture the spirit and sustain mental stability so that meaning can be found day after day in the tasks of caring for someone loved deeply. 

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

 

June 18, 2009

What should we Tell the Kids? Our Family and Friends?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , |
1 Comment 

When Mary Ann was diagnosed with Parkinson’s twenty-two years ago, our Daughter Lisa was a Senior in high school and our Son Micah was in the Eighth Grade.  They were, of course, both living at home.  I had gone ahead to a new job in Oklahoma City, many hours away.  The family joined me there at the end of the school year.

Since the kids were at home, they knew pretty much from the beginning the name of the Disease with which their Mom had been diagnosed.  For those who are diagnosed after the children are out of the house and living elsewhere, the question is, when should they be told.

I am convinced that more information is better than less information.  Hiding the truth is unsettling to the children and unfair to them.  They are a part of the family.  They need to hear from Mom or Dad, whomever has the disease, what it is and what it means.  Adult children, even young adult children could easily feel betrayed if they found out from someone else through a slip of the tongue what they should have heard from their parents.

Mary Ann chose not to tell family and friends for the first five years after diagnosis.  She did not want to be treated differently on account of the Parkinson’s.  I would have preferred telling family and friends much sooner, but it was her call.  She had the right to decide who should know what about her diagnosis, and when they should know it.

My bias is toward laying out the basic information so that there is no guessing or wondering.  The disease seems to have more power when it is secret than it does when it is out in the open.  For people who care about you to move through the process of coming to accept it, they need to know about it.

When finally the news was out, we could begin to deal openly with the various challenges that came with it.   People were anxious to help to whatever degree they could. The Parkinson’s just became a part of the landscape of our lives.

Caregivers and spouses need to decide as each new dip in the roller coaster comes, how much to tell whom and when to tell them.  I have heard many say, “I didn’t want to worry the kids, so I didn’t tell them what was going on.”  The result of that approach is to increase the concern of the kids since they can’t count on hearing the truth about what is going on.  They wonder what they are not being told.  They worry about how things are really going.

It is not, of course, as easy as deciding to tell them everything all the time.  Since adult children have full lives with worries of their own, they can be overloaded with too much information, drawing them into every bump in the road in their parents’ struggle.

I guess the goal is to find the Golden Mean, the balance that allows them to be confident that they will hear when there is a significant change, but not be drawn into the day to day ups and downs.

The same is so with friends and family.  They are interested in how things are going, but they do not need to be invited to join you on your roller coaster ride.  They have one of their own.

One mistake I have made in the past as I have communicated changes in our situation, is to share a noticeable dip in the roller coaster we are on, but neglect to give a quick follow-up when things are going better.  Especially those with whom we share only occasionally and then only when there is a dramatic change can be left thinking we are at a low point in our struggle when in fact we have come out of it to a much better place.

Gratefully, at least for computer users, there are free websites that can be used to post updates.  That way people who are interested in finding out what is going on can check the site to see how things are going.  Those sites can be used to make sure that people have accurate information on your situation, rather than resorting to the “I heard that…” word of mouth that may confuse the facts.  A couple of sites that come to mind are http://www.caringbridge.org and http://www.carepages.com.

As for the kids, they need to be confident that they will hear about any major changes without being drawn into the day to day ups and downs.  That provides them with a sense of security that allows them to concentrate on their own lives.  We raised them to go out on their own and make lives for themselves.

Friends and family will vary in how much they want to know, but they cannot be a support when troubled times come if they don’t know about the trouble.  Let them know when the troubled times have relented so that they can celebrate with you.

The people in your life care how things are going.  They want to know, just remember that they have lives of their own.

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

 

June 17, 2009

Caregivers: Choose Life

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , |
Leave a Comment 

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.

 

June 14, 2009

Creating a Nurturing Environment

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
Leave a Comment 

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.

 

June 13, 2009

Do Each Task as if it is Important

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength | Tags: , , , , , , , , , , , , , , , , , , |
Leave a Comment 

I cleaned the kitchen floor two days ago.  I got out the Swiffer WetJet with the little button on the handle that squirts some cleaning liquid on the floor to be wiped with the pad at the end of the mop handle.  It is not rocket science.  I didn’t break a sweat.  The floor looked nice afterward. 

I have an earned doctorate; at one time I could read with limited proficiency five languages (English, of course, plus Latin, Greek, Hebrew and German).  At this point I can barely handle English.  I will not bore you with the details of the work that I have done in my career.  Suffice it to say, I could complain that cleaning the kitchen floor with our Swiffer WetJet was hardly important enough to be very satisfying. 

There was something satisfying about sweeping the dirt off the floor (I tracked in some dirt earlier in the day), then squirting and rubbing until the spots were removed.  My days are mostly filled with pretty simple and mundane tasks.  I get Mary Ann to the bathroom, to the table, bring her pills and juice and yogurt and Cheerios or Special K or Cinnamon Toast or a banana or a granola bar for breakfast.  I clean out the commode from the night before, make the beds, get Mary Ann dressed, maybe wash her hair.  I put wash in the washer, switch it to the dryer, fold it and put it away.  I fill the dishwasher, run it and then empty it. 

There are very simple meals to be made for lunch and for supper.   We sometimes head out to get something to eat at one of our regular spots.  I feed the birds and read emails while Mary Ann watches television.  I suspect I will not be nominated for one of the Nobel prizes for notable accomplishments in household care.

The role of Caregiver does not bring with it great public recognition, although the article Linda wrote on our situation did give us a moment of notariety in our local paper.    Each of the things I do during the day seems to have little importance, little value in the grand scheme of things. 

Within the history of the spiritual journeys of leaders in many religious traditions, there is a certain approach to doing each task, important or not by external standards, in a way that recognizes its inherent value.  The Rule of St. Benedict provides great attention to detail. urging all to work at menial tasks no matter their status.  Celtic Spirituality emphasizes focusing full attention single-mindedly on the task at hand, no matter what it is. 

I was in a committee meeting one evening.  The group was a fairly congenial crew, at least most of the time.  We were gathered to evaluate candidates for an opening at the Elementary school sponsored by three congregations.  I am not sure what triggered the interaction, but somehow the matter of the need to multi-task came up.  One of the women in the group immediately said that recent studies of the brain had revealed that women’s brains were hardwired for multi-tasking, and men’s brains were not.  Now I have no idea of the validity of the information.  I did however have a wonderfully annoying reply.  I said that may be true, but men do one thing at a time and do it well.  After the laughter subsided we went on with the meeting.  I still don’t know what was so funny about that.  Actually, I couldn’t even complete the sentence about men doing one thing at a time and doing it well since I was laughing so hard myself. 

There is something to be said for doing one thing at a time and doing it well.  Another way to say it is that it is good to focus full attention on the task at hand, to immerse yourself in it, heart and soul, to avoid distractions as much as possible. 

It seems as if much of what we do is done as quickly as possible to get on to the next thing or the really important stuff.  There is a sense in which we simply miss a good portion of the life we are living day by day, in anticipation of what will come later in the day or tomorrow or later in the week. 

Rather than measuring the importance of each task by what importance it has to others, or how much value it has in the marketplace,  how about paying attention to the task itself.   A priest named Ed Hayes has written some great tools for learning to pay attention to every task, big or little.  A couple of his books are Pray All Ways and Secular Sanctity. 

Whether a person has a spiritual understanding of reality or not, being present with each task while doing it provides an opportunity to recognize the importance, value, meaning, purpose of even the simplest of activities.  It is calming and satisfying to do one thing at a time and do it well, or do it with intentionality. 

When I listen to music, I usually do not use it as accompaniment for something else.  I listen to it.  The music sometimes becomes very powerful in touching me deeply when it could not if I was doing something else at the same time.  When I wash Mary Ann’s hair, it gets my full attention.  When I make the beds, the doing of it creates a feeling of order to my day.  Feeding the birds provides a meaningful intersection with a world outstide the walls of our house. 

Being present with whatever we are doing does not demand searching for some sort of deep meaning.  I suspect in the world of sports it is sort of like being in the game.  

The speed with which life comes hardly seems to allow the possibility of doing one thing at a time, being fully engaged in a single task.  I think it is fair to ask the question, does multitasking actually get more done, or does it just get less done on each of more things?  How much safer would the roads be if drivers did one thing, drive the car.  How many fewer errors in operating rooms would there be if the doctors, nurses, technicians all gave exclusive attention to what they are there to do.   

Rather than treating the simple daily tasks as throw-aways of little value, engage each one fully, experiencing every dimension of it, soaking in the sounds and smells and sights and textures and maybe even tastes.  Rather than measuring its importance by some external standard, allow its inherrant value to emerge, from the inside of the task. 

Do each task as if it is important.  It will become so, and with it meaning and purpose and value will be added to each day.  Caregivers’ lives are filled with mundane tasks, mundane, but important. 

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

 

June 12, 2009

Caregivers: Be Safe or Sorry

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , |
1 Comment 

The extension ladder is old and not very stable.  The years of very little exercise have stiffened this sixty-six year old body so that moving up and down a ladder is not such an easy task any more. Lifting the ladder off the hooks in the garage tested my wheelchair lifting muscles.  Then there was the matter of moving the ladder every few minutes along the gutter so that I could climb up with my bucket, hook it on a rung and grab handfuls of smelly rotted little seeds from the neighbor’s trees.

I am not much of a ladder person.  Heights are just not my thing.  I suppose I am sort of acrophobic.  I don’t mind riding in an airplane, although recent news events may change my opinion on that.  On Youth trips to a beautiful camp fifty miles northwest of Colorado Springs called Lutheran Valley Retreat, I joined in the climb up Cedar Mountain.  I still remember my first time.  I was terrified.  As a pastor and counsellor on the trip, more than ten years older than the oldest of the Youth, I was too embarrassed to admit it.  The way I got through the climb that first year was to convince myself that if thirteen year old people could climb it, at thirty, I ought to be able to climb it.  I decided that in spite of my insides being less sure of it, I was safe.

Other than the year the lightning almost got us, I felt safe from then on.  After the first year I was a seasoned pro, climbing with bravado.  Still, if I am not completely confident that I am secure, heights are very unsettling to my insides.  I will not walk to the edge of a very tall building to look out windows if they are floor to ceiling.  Vertigo sets in.

As I was climbing up the ladder to clean out the gutters yesterday afternoon, the issue of my safety came to mind.  The ladder sometimes slipped at the top toward one side or the other as I climbed up.  I started thinking about what I would do if it fell, where I would land, what way to jump if it started going.  It was not a particularly scary thought to me, just a matter of fact analysis of the situation.

As I was analyzing the dynamics of falling, it popped into my mind that hurting myself would not just be a matter of getting fixed whatever broke, arm, shoulder, knee, or something worse.   What about Mary Ann.  She needs me to do the most basic daily tasks with her or for her. Hurting myself would hurt her.  She counts on me. If I were to do something stupid, our ability to maintain our little world would be gone, at least for a time.  She would certainly be mightily irritated with me.

The way I responded to that realization was to become very methodical about setting the feet of the ladder, making sure it was flat against the gutters.  I stepped up the ladder more slowly.  I caefully hung the bucket for the sludge.  Thinking about my responsibilty to Mary Ann as Caregiver translated to more care of myself.  

What happens to me is not just about me.  Those of you who have children are likely to have come to the realization that the choices you make do not just affect you.  Riding a bike without a helmet, ignoring the seat belt, driving twenty miles over the speed limit (under ten is okay, right?), smoking like a chimney, whatever puts you at a significant health risk is more than an issue of your freedom to do as you please.  It is no longer just about you. 

There is also a frustrating flip side to the matter of keeping safe for the sake of our care receiver.  What would be fair, if fairness were an option, is for the one for whom we are caring to have the same concern for keeping safe.  It would seem fair for the Care Receiver to avoid taking risks so that their Caregiver would not have an even tougher time trying to deal with the consequences of their risk-taking gone bad. 

I hesitate to bring this one up again, but it is one of the most difficult areas in our relationship as Care partners.  It seems that one of us in this partnership is intent on taking risks no matter how likely the risk is to produce more work for the Caregiver.   The truth is, there is no thoughtful intent to make work for the Caregiver by taking unnecessary risks.  The kind of thinking that would be needed for that intent is no longer available.  The risky actions are just the reflex actions of a mind and body with the simple need for the freedom to move at will and do the same things that have always been done.  There is no fully conscious awareness that the disease process has taken away some freedoms. 

Nonetheless, it is very difficult to watch a Loved One assert that independance without regard for the consequences to herself or her Caregiver.  It is just part of the reality within which we live now that Parkinson’s and Parkinson’s Disease Dementia have joined us in our journey.  Fairness is irrelevant to matter of safety. I need to keep myself safe so that I can continue to care for her.  She is free to do whatever she can no matter the risk. 

Nobody said life is fair.  If it was fair, she wouldn’t have to deal with the ravages of the Parkinson’s in the first place.  It is not fair, it just is.

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

 

June 10, 2009

Who Makes Daily Decisions and How?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , |
Leave a Comment 

Should we go to the Neighborhood Brunch or shouldn’t we?  It took at least three days to get the decision made.  The way I finally figured out whether Mary Ann wanted to go or at least was willing to go, was by jumping up to help her when she got up from her chair and headed out to the kitchen.  She was looking for the recipe for the Blueberry French Toast that has always been a hit at the Brunch and wherever else we have taken it.  She finally signaled her wishes by her actions.  it was 5pm in the afternoon of the day before the Brunch.  We had only a few of the necessary ingredients in the house.

Getting decisions made is an unbelievably difficult challenge in our household.  We have regularly played the “What do you want to do?” game.  We almost always played that game when it was time to go out to eat. It is a miracle that we ever actually got to a restaurant and ate.  The process of deciding where to eat always went the same way unless some external circumstances led both of us to the same idea immediately.  If it was time to eat and we happened to be near Bobo’s Diner, the decision was easy – still is.  The vast majority of times it went this way, I began listing every restaurant that I could think of until I named one that brought to Mary Ann’s mind a particular menu item for which she was in the mood. Sometimes that went on so long I started heading home out of frustration.

Some things have changed as the disease process has taken its toll on Mary Ann.  The Parkinson’s has softened her voice and slowed the mental process, making it difficult to respond to questions.  The Parkinson’s Disease Dementia (a Dementia with Lewy Bodies) has stolen even more decision-making ability.  Sometimes it is almost impossible for Mary Ann to get hold of what she is thinking.

Imagine trying to play the “What do you want to do?” game when the person being asked that question has absolutely no answer, no idea how to answer.  Please understand, that does not mean there has been any change in the wanting of certain things.   It is just next to impossible for them to locate that want, name it, and get the words out of their mouth.

As with most of us who are doing full time caregiving, much of the time I can read Mary Ann like a book.  I may very well have enabled her lack of responsiveness by figuring out what she wants without her having to say anything out loud.  We have been at this relationship for well over four decades.  I can usually figure out what she wants by analyzing the circumstances at a given moment and remembering what she has wanted a thousand other times in those circumstances.

Making a decision on anything other than routine matters where circumstances can easily be read is often a protracted and painful process.  I asked about the Neighborhood Brunch occasionally for a couple of weeks.  There was no reply, nor were there any non-verbals that gave a clue as to her wishes.

I suppose the question could be asked of me, why bother to include Mary Ann in the choosing.  Why not just make the decision and go with it.  For one thing, that is not how I function. Ask those poor folks who worked with me in a Team Ministry.  Being inclusive of everyone in the process of making a decision at work often makes for a better decsion and more likelihood that all the participants will be on board when it comes time to act on the decision.  On the other side of it, I know there were times when we processed things too long and everyone wished as the Senior Pastor, I would just make the decision so that everyone could get on with doing what we were talking about.  As I often admitted, I just wanted to work it out so that I wouldn’t get the blame if the decision turned out to be flawed.

Why include Mary Ann in the decision-making?  She deserves to have something to say about her own life.  Because of the Parkinson’s and the cluster of additional health issues, she has had stolen from her any shred of control of her own life.  She has always been strong-willed, so running roughshod over her wishes would not work.  She would figure out a way to stand up for herself, even if she might take a passive-aggressive approach.

I work very hard at trying to give her the chance to decide what we will do.  I usually try to guess what she wants and then frame the question about what to do by saying “would you like to [insert what I have guessed she wants to do].”  I often have to follow it with “just say yes or no?”

As the Satuday of the Brunch got closer, I became more specific about the options.  If we went to the Brunch it would mean having the hassle of making the Blueberry French Toast, but then we would have the valuable social interaction.  I probably said it in a way that would have revealed to the attentive that I was not much interested in the task of making the BFT.  For the last two days before, I tried the “do you want to go, yes or no?” approach a number of times.  There was no response, nor where there any non-verbals I could read.

By Friday afternoon, I was specific that if we were going to go, we would need to go to the store soon.  The recipe demands that the BFT sit overnight before baking.  Still there was no response.  I don’t remember how long after that attempt at getting a response she got up with that restlessness that indicates there is something she intends to do other than the usual.  It only took me seconds to put two and two together.  She was looking for the recipe.  We were going.

I have to admit that there is a part of me that resents that she had not given any indication sooner and that her decision meant I would need to get us to the store, come home, make the Blueberry French Toast while trying to include Mary Ann in the process of making it (harder than doing it myself).  I dreaded the fact that I would need to get up at least two hours earlier than usual to get myself cleaned up, get the dish out of the fridge to stand for thirty minutes, cook it covered for thirty minutes, uncovered for another thirty minutes, make the blueberry sauce that needed to be cooked just the right length so that it could be poured over the casserole just before serving it.  During that same time Mary Ann needed to be aroused, dressed and fed so that we could make it to the Brunch on time.

When all was said and done, the Brunch went well, the Blueberry French Toast was a hit (the huge pan came home completely empty) and we enjoyed the morning.

Making decisions is terribly difficult to do, but Mary Ann deserves to be a part of them.  As frustrating as the process can be, it is important that Caregivers and Care-receivers make decisions 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.

Added bonus:
BLUEBERRY FRENCH TOAST

12 slices white bread
2 8oz. cream cheese
l c blueberries / 12 eggs /2 c. milk
1/3 c. maple syrup

Sauce: l c. sugar l c. water
2 T cornstarch l c. blueberries
l T butter

Cut bread into l inch pieces. PLACE 1/2 in buttered 13 x 9 baking dish. Cut cream cheese into l inch cubes. Place over bread. Top with berries and rest of bread. Beat eggs. Add milk and syrup. Pour over bread mixture and chill overnight. Remove from fridge 30 minutes before baking. Cover and bake at 350 for 30 minutes.. UNCOVER and
bake for 30 minutes or until set.
SAUCE: in a saucepan combine sugar, butter, and cornstarch add water. BOIL for 3 minutes over med. heat stirring constantly. STIR IN BERRIES and reduce heat. Simmer for 8-10 minutes. Pour over French toast before serving

Mary Ann Tremain
Faith Lutheran Cookbook 6/25/02

 

June 6, 2009

Caregivers, Why Bother to Plan Anything?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , |
[5] Comments 

She suggested it!  “Let’s go to Braum’s for ice cream.”  Understand, the closest Braum’s is in Emporia, Kansas, an hour’s drive on the Interstate.  We usually take more scenic roads resulting in closer to an hour and a half drive time. 

Noble husband that I am, I will make the sacrifice, drive us to Braum’s, and out of the goodness of my heart join her in eating a two scoop Hot Fudge Sundae topped with salted pecans, real whipped cream and a cherry on top.  Sometimes I surprise myself with my generosity. 

Here is the rub.  When Mary Ann suggested going, it was too late in the day and storms were coming.  Thinking through that sort of information and making a decision demands using what is referred to as the Executive Function of the brain.  The mild Parkinson’ s Disease Dementia that has recently been added to the Parkinson’s Disease has dimished that particular function. 

The plan then was to go the next day.   As the next day progressed a combination of intestinal activity and fainting (Orthostatic Hypotension) flipped the nap switch in her.  I say it that way because the fainting spells sometimes drain from her the capacity to be up and about.  When the nap switch flips, it is sometimes a challenge to get her to the bed and settled there.  She may crumple to the floor wherever she is when the need for a nap hits. 

The next day included an evening activity, the Parkinson’s Support Group.  There was no moving fast enough to get the trip in before the meeting.  The day after that (yesterday) we planned to go again.  The day was completely clear other than the outing to Braum’s.  The weather was spectacular.   It didn’t happen.  It was a nap that filled the time we were going to use to make the trip.  This time it was not that the nap switch flipped, but it was the need that comes more and more often. 

Parkinson’s Disease Dementia is a Dementia with Lewy Bodies.  It patterns itself differently than Alzheimer’s Dementia.  There is a different part of the brain affected.  One of the symptoms of the progression of the disease is daytime sleeping.  Some days there have been two naps.  The usual length of a nap is two to two and a half hours.  We never know when the need will arise.

Yesterday there was no trip to Braum’s.  Today, I was determined it would happen.  I planned to add another stop along the way.  I thought phoning a friend of Mary Ann’s to come along would make the trip more enjoyable.  Jeanne and Mary Ann enjoy each other, she helps when Mary Ann needs to use a public bathroom, and since Mary Ann is barely verbal, Jeanne adds to the conversation when we travel.   She was not able to join us for the trip, but I was still determined to go. 

Again, the day was beautiful.   We ate some lunch at home.  I made some surprisingly tasty chicken salad.  Those who have read many of the posts on this blog appreciate what a remarkable accomplishment it is when I make a meal, especially one that is fit for human consumption. 

Almost immediately following lunch, the nap need arose.  By the time Mary Ann awoke, the trip to Braum’s was again out of the question.

Why bother to plan anything?

I am a planner.  I get in my mind how the day will go, what needs to be done, and varying from that plan upsets my equilibrium.  The role of full time Caregiver has resulted in the dismantling  of my daily structure. 

Caregivers respond, they do not work a predetermined plan.  Mary Ann’s needs come when they come.  She cannot fill them herself.  That is my job.   The challenge is trying to figure out how to keep from going crazy since as a Caregiver, I have very little to say about what I will be doing and when I will be doing it. 

For eighteen years of my almost forty years in ministry before I retired, I worked with Youth.  The first three years in the ministry I taught religion classes and served as a Pastoral Counselor at a large parochial high school of some 900 students.  For the next fifteen years, working with Youth in a congregation was a major part of my portfolio.  When leading Youth activities and classes and retreats, I learned quickly that there needed to be a detailed plan in place but along with that plan a willingness to throw the plan out completely if circumstances demanded it.   

That is exactly the sort of planning needed to be the primary Caregiver for someone who needs help with most everything they do — without the Caregiver going crazy.  My goal from the day I retired has been to have options immediately available so that if Mary Ann’s needs eliminated whatever we had planned, something else could be substituted. 

What that means most of the time is that I need lots of small tasks that can be done here at the house while Mary Ann is napping, or interested in a televsion program.  The hardest part of adapting to this new pattern has been gaining the ability to let go of plans I have in my mind without becoming resentful and grumpy.  In that regard, I am still a work in progress. 

Today, when Mary Ann woke up, instead of heading for Braum’s an hour away, we went to the Baskin and Robbins on the other side of town, drove by the beautiful Ensley Gardens and came home.  A Hot Fudge Sundae made with Nutty Coconut ice cream with chopped nuts, whipped cream and a cherry on top goes a long way in calming the ruffled feathers of a planner whose plans have just been frustrated. 

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

 

June 3, 2009

Caregivers Watch for Other Diseases

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , |
Leave a Comment 

She was taking so many pills, it just seemed as if the problem was acid reflux.  Looking back, it now seems so obvious.  Her chest would start hurting when we walked very far.  It often seemed to hurt when she had strong dyskinetic movements, the ones that come with years of taking the main Parkinson’s med, Sinamet.  The movements are the ones that Michael J. Fox often has.  I can even remember once hearing her say as we were walking back from the mailbox, I think I am having a heart attack.  The pain always seemed to subside after a bit.  There were so many aches and pains that were attributable to some aspect of the Parkinson’s that I just didn’t put two and two together. I take some comfort in realizing that neither did our General Practitioner or our Neurologist or our Endocrinologist or our gastroenterologist put two and two together.  As many medical tests as Mary Ann had had in more than a decade of the Parkinson’s no one spotted it.

When finally one night she had a heaviness in her chest and she went to the Emergency Room, the process began that revealed she had blocked arteries. She truly had had some silent heart attacks.

It seems so obvious now as I look back.  I think what happened is that the one already diagnosed major degenerative disease, Parkinson’s, took up so much space in my perception of our reality, that there wasn’t room for another health issue.

I remember when ministering to parishioners before I retired how difficult it was for people to handle multiple problems at once.  Some seemed to feel that if there was one health issue or other major problem in theier lives they had reached their quota for problems.  If a second and third major problem joined the first, it was an affront to fairness. How could it be?  The one problem was enough.  How could another problem and then one more be added?

Our journey has taught me in no uncertain terms that having one major problem does lessen the likelihood of having another.  Mary Ann has the Parkinson’s, high blood pressure problems, low blood pressure problems, low thyroid — she has had congestive heart failure, a major life-threatening pneumonia, four spots of skin Cancer removed. Some health problems actually make a person more susceptible to certain other problems.  When that is the case, the doctors and the Caregiver watch out for symptoms of those problems.

It is when a health issue emerges that is not related to the main diagnosis that it can slip in unnoticed.  Just because Mary Ann has Parkinson’s does not mean she cannot have some other health problem.

The same single focus can cloud the perception of Caregiver’s and doctors when the patient is elderly.  New symptoms are dismissed as a consequence of getting older.

What brought this topic to mind was the trip to the Dermatologist to have the stitches removed from the surgery on Mary Ann’s latest Basal Cell Skin Cancer.  I asked the doctor to look at a couple of other tiny spots just to be sure.  They are no problem.  We did, however, make a routine appointment for six months down the line.  I will continue to watch for spots on her skin that look suspicious.

The Parkinson’s needs not to cloud our perception or lessen our vigilance for other problems.  Mary Ann has her annual Mammogram.  She has a periodic Colonoscopy.  Blood tests check her thyroid activity, urine tests check her kidney function, her blood sugar level is checked along with her cholesterol. She has gotten the Pneumonia shot and will get the booster in another couple of years.  She routinely gets the flu shot.  She has gotten the shot to help prevent Shingles.  Her eyes are checked for Glaucoma, Macular Degeneration, and cataracts.  She has had a bone scan for Osteoporosis.

There are no rules concerning how many or how few health issues one person may have.  Things just happen.  Problems come when they come.  It is not a matter of fairness or lack of fairness.

Whether a chronic illness has joined your household or not, there needs to be the same amount of vigilance.  We all need to do whatever is reasonable and affordable to check for and help prevent the onset of the common diseases that come to many as the years go by.

I now look at and listen to Mary Ann more attentlvely and no longer assume that whatever the pain, it must just be the Parkinson’s.  There is no quota for the number of problems one person can experience.  Caregivers who understand that will give better care.

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

 

June 1, 2009

Good Ideas for a Caregiver and Receiver’s Day

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
Leave a Comment 

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.

 

« Previous Page — Next Page »