The Caregiver Calling

A few days ago there was a thread of discussion on an online group I am in for Caregivers of spouses with Lewy Body Dementia.   There were all sorts of issues that surfaced as people talked about stepchildren who seemed unwilling to show real concern for their parent who has dementia and his/her caregiving spouse.   In some of the cases there was very active interest by those same stepchildren in the disposition of the estate when that time would come. 

That conversation brought up lots of legal issues that need to be dealt with whether or not there are any problems in the family.  This is one of the times I am especially grateful that we have a healthy family with a deep and genuine love combined with intellegence and common sense.  It is hard to hear about some of the ugliness that can emerge when money issues trigger a mindless greed in people. 

One of the dynamics of dealing with dementia is that, since the executive function of the brain ceases to work properly, the ability to make well thought out decisions ceases.  Gathering and processing information as is necessary for making good health decisions or financial decisions, is no longer possible, at least consistently. 

With dementia of any sort, the progression of the disease makes it important to act sooner rather than later in planning for future contingencies.  With the Lewy Body dementias, the roller coaster pattern of times of great lucidity mixed with times of the inability to track thoughts, makes it especially important to make long term decisions and set in motion processes that will insure that legal matters will be in order no matter what comes.  The goal is first of all to keep all the family resources available for whatever care is needed for the one who cannot care for him/herself.  Secondly, it is to provide the usual care in estate planning so that the wishes the deceased are reflected in the disposition of their possessions.

While many of the legal issues are related to the time of death, some are matters of concern for the living.  All of us, no matter our age, need a Living Will.  We need people designated to make decisions when we are not able to do so for whatever reasons.  For a Caregiver spouse, the question is, who shall that be.  If legal documents designate a spouse who has dementia as the one who has Durable Power of Attorney for Health Care Decisions, that spouse will be put in the position of carrying a decision-making weight beyond their ability.   If that spouse is appointed attorney-in-fact for all the rest of the decisions that need to be made through a Durable Power of Attorney, the same will be so.  There will be a vulnerability to manipulation by others who may not be a trusted part of the immediate family when major decisions need to be made.  All someone would need to do is obtain a signature in front of witnesses, and the wishes of the Caregiver and spouse could be frustrated.

The way to proceed in the area of all these legal matters is to locate a reputable Attorney who specializes in Elder Law, preferably a member of the National Academy of Elder Law Attorney’s, Inc.  (NAELA).  Powers of Attorney should name someone completely trustworthy who is committed to the wishes and the well-being of the Caregiver.  The transition from spouse to Son or Daughter or other trusted family member can be difficult for the one suffering from dementia.  It is essential to make any needed changes with the full knowledge and participation of all those impacted by those changes.  If no one in the family can be found to serve as the agent for the Powers of Attorney, a Guardian may be chosen.  Often the court has a list of people who can serve in that role. 

Then there is the issue of how a Will should be structured when there is a spouse with a form of dementia.  The challenge comes if the Caregiver dies before the spouse with dementia.  If the all the assets transfer to the spouse with dementia, as was so with the Powers of Attorney, that spouse will have decisions to make that he/she is no longer able to make, and he/she will have a vulnerability to manipulation.  If all the assets are in the name of the spouse with dementia, they are all subject to being drawn down if nursing home care is needed. 

There are a number of options that the Elder Law Attorney can lay out for the Caregiver and Spouse.  If there are trusted children, it is a fairly simple matter to assure that all the resources will be used for the spouse with dementia should the Caregiving spouse die first.  All the assets are put in the name of the Caregiver with the children as beneficiaries of the estate.  Again, an Elder Law Attorney needs to be consulted rather than taking advice written in a blog. 

Since beneficiary designations on insurance policies, IRA’s, pension plans (and any other instrument with a beneficiary designation) go directly to the beneficiaries listed and take precedence over anything written into a will, all beneficiary designations need to reflect the current wishes of the Caregiver and spouse. 

When there is a spouse with dementia the legal issues  are complex, but ignoring them could result in some very unpleasant consequences, especially if the Caregiving spouse predeceases the spouse with dementia.  The sooner decisions are made, the better.  

Again, the key to making good decisions and formulating plans that are legal, clear, and reflect the wishes of the Caregiver and spouse, is to find a reputable Attorney versed in Elder Law in your state. 

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.

As we look back on today, it will be remembered as a good day.  Instigated by a birthday gift, we went out a couple of days ago and bought lots and lots of plants, plus potting soil with fertilizer in it.  Yesterday we bought the trowel and hand cultivator to help us do the planting. 

Today we did round one of the planting.  It was a very hot day, so the sweat flowed freely from both of us.  Mary Ann was in an old lawn chair, one of four, that serve as our deck furniture.  (No, kids, we still haven’t gotten decent deck chairs.)  There was a steady shower of little brown seeds from the neighbor’s River Birches.  The air was full of them. 

My job was to do the planting in the large pots on the deck and an area just off the deck next to the chimney, the only shady spot we have.  It seemed to take forever just to get everything ready to go.  We had intended to do this planting for the last three days.  I was doing a bit of procrastinating, but the timing of the daytime long naps filled the times that seemed most appropriate for planting.  When the need for a nap comes, Mary Ann almost collapses into the bed and sleeps for two hours, sometimes two and a half.  It can happen up to twice a day. 

It was a big deal to finally actually get started on the task.  Plans had been frustrated for three days.  Today we got started.  It took a while to prepare the three containers on the deck.   I always asked Mary Ann what she wanted to put where as I planted.   She had had a nap earlier in the day, but she was still having a little trouble processing any questions about what to plant where.  I would end up just saying how about this, and she would answer, yes.  It is what is called the executive function of the brain that is the first to go with Parkinson’s Disease Dementia (a Lewy Body Dementia).  Things went pretty well as I got the containers filled with the plants. 

Then came the area next to the chimney.  Our kids had dug up the sod, put down landscaping fabric, covered the area with mulch, made a few holes in the fabric and put in some plants a couple of years ago. 

I headed to the garage to get a couple of rakes so that I could move the mulch to get on with the planting project.  All I did was walk from the back to the front of the house, into the garage, grabbed the rakes and headed around the house to the deck again.   Just as I was coming to the deck I heard the sound of her falling into the gate by the stairs to the lower area. 

As happens so often, when I was out of sight, she got up to do something, which she could not remember when I asked her afterward.  The falls are disturbing when in the house on the carpet.  On a wooden deck, against an open gate at the top of some steps was frightening.  My mind went immediately to the possibility of a trip to the Emergency Room. 

Gratefully, there was no damage to be found other than to our attempt at just enjoying a normal activity.  It was frustrating to me that it was the moment I was not there to help that she chose to stand up and walk.  It seemed impossible to continue doing what we had planned for so long and were enjoying doing.  The only safe thing seemed to be to go back inside where there was carpet and where with the monitor I could get to her quickly if she got up.  That decision would have stopped in midstream something we wanted to do, something that needed to be done soon if the plants were to survive.

I chose to continue the planting by the chimney.  Another time would be no better in terms of risk.  As I went on with the task, Mary Ann started to get up again.  I went up on to the deck and asked her what she was doing.  She wanted to see what I was doing.  The rail and the Air Conditioner condenser were blocking her view.  I helped her stand and asked her to hold on to the rail while I went back down to arrange a couple of plants so that she could approve their placement.  Before I went down, I pulled the lawn chair behind her so that she could sit right down if she needed to.  When I got to the plants by the chimney, I looked down at them for a moment and heard her fall into the lawn chair.  She had fainted.  I am grateful that she fell into the chair and did not go down on the deck again.  I ran up to her to hold her in the chair until she regained consciousness.

After that, she finally seemed convinced that she should not try to get up unaided again while on the deck.  I was able to finish the planting.  There is more to be done tomorrow in a couple of other areas.  We will manage somehow. 

Our version of normal includes the recognition that we may not be able to do anything we hoped to do, planned to do on a given day.  Yesterday, I had things in the car and was ready to take her to get something to eat, when the need to nap came on with a vengeance.   When that happens, she just slumps over in the transfer chair with her head on the arm or the table next to it. Today, the same thing happened shortly before we were to begin the planting.  It was delayed a couple of hours. 

Tonight I took a break three or four paragraphs ago to help her use the commode.  I saw on the monitor that she was moving.  When I got to the bedroom, she asked me to close the door because a mother and two children were outside the bedroom door.  Her eyes were wide open as she looked at what appeared very real to her.  Apparently the Thursday people (as she once called them) chose to come on Friday this week.  Of course there was no one there. 

As she got on the commode, she fainted and was out for many minutes.  Then I got her up from the commode, and just in trying to get bed clothes pulled back up, she fainted again.  Since the commode is right next to the bed (I pull it behind her to minimize the travel distance), I was able with much difficulty to shift her so that she was sitting on the bed.  After a bit, I helped her stand again to finish pulling up her PJ’s, and she fainted once more.  I finally just laid her on the bed and pulled them up as best I could, arranged her on the bed, her head on the pillow, covered her and now she is sleeping soundly.   

Our version of normal is not really very normal by most people’s standards.  But as the years have gone by, I have realized that there are very many whose normal is either like ours or much worse.  As I read the posts on the caregiving spouses of those with Lewy Body Dementia, I can put our situation into perspective.  We have a quality of life that many would envy. 

The falls tried but did not steal the joy from our day.  Plans are hard to make, but can be changed now that I am retired and make no commitments.  Our normal is very liveable in spite of its challenges.  The plants will grow (hopefully), and their will be flowers on the deck to enjoy for weeks to come. 

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 finally happened this morning.  I went to the kitchen just for a moment.  Then came the usual thump.  She was down.  The last time she fell, we had to go back to the Dermatologist to re-sew a two inch row of stitches, actually two rows, one deep in the wound and one pulling the surface of the skin together.  She had fallen directly on the wound and had broken the stitches.  The Plavix thinned blood ran freely.

It was just the other day that it dawned on me that we were then almost three weeks out from that drama, and there had not yet been another fall.  To appreciate the significance of that record, you need to know that Mary Ann has fallen multiple times a day, up to a dozen, in the recent past.  Up to that last disastrous fall, the pattern had been that falls came daily, sometimes two or three times.  On occasion there would be a day or two without a fall, but that was rare.

Mary Ann falls for a variety of reasons.  One of them is a symptom of Parkinson’s.  In fact it was one of the central symptoms that took her to the doctor when we first suspected that there was something wrong late in 1986.  She had pain and tight muscles in her left shoulder.  She had pain and stiffness in her left hand.  She would on occasion lose her balance and roll to the ground.  Maybe five years before that, we went on a couple of three day long church ski trips with other famiilies.  Mary Ann struggled especially with getting off the lift.  She always fell and had very much trouble getting up.  Finally, she just chose to stay in the lodge while we skiied.  Little did we know that a few years later the diagnosis of Parkinson’s would come.

That particular symptom of Parkinson’s cannot be corrected with a pill.  Physical therapy can help, but other than that there is no medicine that restores the balance.

A central symptom of the particular expression of Parkinson’s with which Mary Ann has been diagnosed is called bradykinesia.  Wikipedia has a good definition of bradykinesia: “Slowed ability to start and continue movements, and impaired ability to adjust the body’s position.”  When Mary Ann tries to start moving, the top part of her body may move forward while her feet refuse to move. Of course, when that happens, she falls unless there is an arm or a walker supporting her.

She seldom tries to use a walker any more.  She doesn’t have the physical strength to move it ahead of her.  When she did use it, she would often lean forward, body moving and feet cemented to the floor, leaving her in a very precarious position, hanging on to the walker for dear life.

With bradykinesia, a soft carpet may as well be wet cement.  Her feet just won’t move.  We have replaced all the carpet in the house with a short-knapped berber that is firm enough that she can move her feet (and we can roll the transfer chair), but soft enough to cushion her falls.  Most falls still leave a rug burn or a bruise or both.

When Mary Ann gets out of her transfer chair and tries to turn to walk around it, falls often happen.  When she tries to pick up something from the floor (now it may be something that is not actually there) she is, of course, vulnerable to falling over.

Since her stroke and the addition of the Parkinson’s Disease Dementia, a Lewy Body Dementia, Mary Ann has had some spatial perception problems.  Getting the utensil where she intends it to be when eating is a problem now.  When she is walking, sometimes she just does not perceive accurately where things are so that she can move her feet around them rather than trip over them.

In the last few years the Orthostatic Hypotension has been added to the mix.  That is a term that refers to the body’s inability to constrict the blood vessels fast enough to raise a person’s blood pressure to counteract gravity when standing up.  An adequate supply of blood is not pumped to the brain.  The result is called syncope, a fancy word for fainting.  It is not hard to figure out what happens next.  When people faint, they fall.

The time not so long ago when Mary Ann was falling up to a dozen times a day, it was the fainting that caused the increase.  She now takes medicine (Midodrine) to raise her blood pressure.  The medicine has helped some, but it has not eliminated the problem.  In fact the high blood pressure is taking a toll on her heart and her kidneys. There are often trade-offs that need to be made to maintain a reasonable quality of life.

Maybe now you can understand just why it was such a monumental accomplishment to make it twenty-two days without falling.  I am not completely certain why we managed to avoid falling for so long, but there are some things that seem to have potential for helping reduce the falls.

One thing is that Mary Ann’s last fall was pretty traumatic.  She has fallen hundreds of times and rarely done much damage to herself.  This time there was damage.  The return trip to the Dermatologist to be sewn up again was no picnic.  Mary Ann’s automatic pilot may have been reset to reduce her inclination to put herself at risk for falling.

Another thing has been my increased commitment to getting to her before she has a chance to fall.  I now spend less time in another room unable to see her.  I move more quickly when I suspect she might be on the move.

Since that last major fall, I have obtained the audio-visual monitor that allows me to see as well as hear her when she is lying in bed or sitting in her chair and I am at the computer.  I am now able to anticipate her getting up and heading out.  I can see her shifting or leaning forward, about to get up.  I am able to be there and help her before she falls rather than waiting for the thump and running to pick her up.

One recent change that may be having some sort of subtle impact on her stability is the new medication she is taking, the Exelon Patch.  It is intended to help with memory and alertness. To my knowledge it is not supposed to have any impact on the motor symptoms.  While I can’t put my finger on any identifiable dramatic change since she has been using it, she does seem to be doing better in most areas of functionality.  Since we live on a roller coaster of symptoms that come and go, sometimes very quickly, most of the time there is no clear reason for declines or improvements in Mary Ann’s ability to function well. There is no telling for sure how much, if any, impact the patch is having.

In the matter of this morning’s fall, Mary Ann, as is usually the case, did not hurt herself.  I still contend she could lead workshops on how to fall without hurting yourself.  I was upset that it happened, but no one can prevent the falls completely. As a full time Caregiver, I have to accept that. Most of all, I am still celebrating twenty-two days without a fall. Of course any decent celebration requires ice cream.  Two Pecan Cluster Blizzards from Dairy Queen beats a champagne toast any day.

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 can’t remember the last time I laughed like that.  I just couldn’t control it.  My stomach hurt I was laughing so hard.  Yes, it was at Mary Ann’s expense, but I just couldn’t stop, and she finally started laughing too.

Yesterday, I started adjusting the sheet and bedspread on her bed while she was standing next to me.  Her question was almost matter-of-fact.  Did I find the squirrel foot?

She has had hallucinations often in recent months.  There have been rats and mice in her bed.  Some have bitten her.  She has seen the Thursday people, the man and woman and their two children.  In the past she has seen a cat, other people, a bird sitting on the window, strings and threads almost constantly.  She has tried to pick up things from the carpet, things that were not there.  She has seen bugs in her food and other bits and pieces of foreign matter.

“Did you find the squirrel foot?”  The question didn’t just tickle it, it set it off my funny bone like the fuse on a fire cracker.  I burst into laughter.  At first, Mary Ann did not at all think it was funny.  After a while, she started laughing at me laughing.  Then, even though the hallucination had been real for her, probably the night before, finally, she was laughing together with me at the thought of there being a squirrel foot in the bed.

It was good to laugh.  It was good for both of us.  It is interesting that a sort of relaxed warmth and affection seemed to surface after our bout of laughter.  I really don’t remember the last time we laughed like that.  Laughter doesn’t come so easily these days.

I don’t know if it is just me, or if it is common to other Caregivers.  My sense of humor seems not to be working so well any more.  I have often taken myself too seriously, but I have also enjoyed kidding around with folks.  Since I am, as they say, vertically challenged, I have endured a lot of smart-aleck comments.  My defense mechanism of choice has been to beat people to the punch and make a joke about my height before they had a chance to do it.

In earlier years, it was all great fun.  Now, I find myself moving too quickly to feeling put down or belittled when I am the object of what would have in the past seemed to be just good fun.

When someone is being light-hearted and silly, the weight of twenty-two years of battling Parkinson’s,  the daily struggles that come with that battle, sometimes steal from me the capacity to just let go and laugh.

Often when ministering to someone who had lost a loved one a couple of weeks earlier, I would observe out loud to them how hard it is to deal with people around them just going on with their normal lives, conversing with one another about trivial things as if nothing had happened, while their world was in a shambles.

Full time Caregivers who are completely immersed in the task sometimes find it hard to let go of the struggle and relax, have fun, be silly.  The Caregiving task seems to expand and fill every corner of their world, leaving little room for the trivial.

It is easy to turn into a Grump.  I have come to do grumpy pretty well.  Even so, we have our moments.  Sometimes muscles that seem to have atrophied, the silly muscles, are revived by something unexpected.   At the risk of being indelicate, we have waged war on constipation for decades.  When there is some especially normal and plentiful activity (if you catch my drift), I can’t help but celebrate with a hearty “Good Job!!!”   I laugh, even if Mary Ann doesn’t.  Who would have thought such a thing could bring such joy.  Dr. Oz would be proud!  (By the way, the first person who reveals to my lovely wife that I mentioned this in my blog, will wake up the next morning with a squirrel foot in his/her bed.)

Gratefully, twenty-two years of Parkinson’s and a couple of years of mild and periodic dementia have still not stolen Mary Ann’s wicked sense of humor.  She has a knack for surprising people with an often softly spoken zinger.

I am not really sure why, but recently, the load has seemed a little lighter, even though there has not really been any change in its contents.  It seems a little easier to relax and be sort of normal, at least our version of normal.

Maybe there is still hope for the return of a sense of humor that has seemed to wander off.  Who would have thought that the search for a squirrel foot in Mary Ann’s bed could have such power!

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 noticed a report on television today announcing that Susan Boyle had made it into the semi-finals of the show “Britain’s Got Talent.”  What is it about that video of her surprising and wowing the British audience when she first appeared live on the  program that is so captivating?  Apparently there have been millions upon millions of viewings of it.

Susan Boyle’s dramatic capturing of the hearts of the audience and millions who have seen the video is so powerful because she seemed at first to be a silly nobody who thought she was a somebody.  She turned out to be a somebody of great talent.  The lessons to be learned from what happened there are many.

For me, her unexpected success has touched a nerve, just as it has apparently done for many others.  There is something about the idea of exceeding expectations and being recognized for doing so that resonates with some part of my inner longings.

Having grown up with the usual childhood lack of self-confidence, there has always been a search for affirmation and recognition.  In high school when Pam and I sang for the first time in a rehearsal the original duet written for the A Capella Choir’s musical “Zingaro” (the song was titled “Right Over There”), all the kids standing around stopped what they were doing, listened and when we were done applauded loudly.  As shallow as it sounds, I realized then just how much I thrive on affirmation.

My absolute favorite movie of all time is “The Man from Snowy River.”  It is the story of a young mountain man in Australia exceeding all expectations as he becomes a man — and, of course, wins the favor of the young lady for whom he has fallen.  When Jim returns to the shock of all, having single-handedly gathered all the stray cattle left behind by the seasoned drovers, I feel the same thrill every time I see it.  I suppose I have seen the movie twenty-five times over the years.  I am due again.  It has been many years since I watched it.

As I tracked back from those two indications of my psychological make-up, I remembered my favorite book as a child, “The Little Engine that Could.”  Wikipedia includes on their web site this early version of the story:  A little railroad engine was employed about a station yard for such work as it was built for, pulling a few cars on and off the switches. One morning it was waiting for the next call when a long train of freight-cars asked a large engine in the roundhouse to take it over the hill “I can’t; that is too much a pull for me,” said the great engine built for hard work. Then the train asked another engine, and another, only to hear excuses and be refused. In desperation, the train asked the little switch engine to draw it up the grade and down on the other side. “I think I can,” puffed the little locomotive, and put itself in front of the great heavy train. As it went on the little engine kept bravely puffing faster and faster, “I think I can, I think I can, I think I can.”

As it neared the top of the grade, which had so discouraged the larger engines, it went more slowly. However, it still kept saying, “I–think–I–can, I–think–I–can.” It reached the top by drawing on bravery and then went on down the grade, congratulating itself by saying, “I thought I could, I thought I could.”

The thrill of exceeding expectations is wonderfully satisfying.

The Wikipedia site also includes this reference: Shel Silverstein wrote a poem called “The Little Blue Engine” that referenced this story, except in the end the engine almost reached the top of the hill but then very quickly slid back down and crashed on the rocks below, and the poem ended with the memorable line “If the track is tough and the hill is rough, THINKING you can just ain’t enough!”

Caregivers live in a world of the impossible.  We are frustratingly imperfect.  We try but we cannot fix our Loved Ones.  Every day we are reminded that we are inadequate to the task.  Even when we do feel as if we have accomplished something, there is no applause, no affirmation — just more to do.  We certainly cannot climb this hill and sail down the other side to success. For many of us there is no end in sight, just more hill.

With that said, there is more to learn from Susan Boyle, Jim, and the Little Engine that could.  I have not read or seen much of Susan Boyle’s history, but she  apparently has been singing since she was twelve years old.  She sings very well.  She sings often.  Her moment came because she sings well and has sung often.  If she couldn’t sing, or had never used the ability, the moment never would have come.  As the story goes, Jim grew up with horses and learned from his Dad and the famous Drover named Clancy.  He had the ability to do what finally brought him recognition and affirmation that he had become a man.  The Little Engine worked day by day, doing his job, growing in strength until he was able when the opportunity came to pull that long train up and over the hill.

Doing what we are called to do, doing it well, learning how to do it better is what finally allows the possibility of success, recognition, affirmation.  Seeking the moment of recognition is meaningless unless there is substance to that which is to be affirmed.  In fact, seeking the affirmation diverts attention and energy away from the very work that is worthy of such attention.

While I still love affirmation and attention, time and experience and Spiritual Formation has re-framed my inner longing.  Before I retired, when I delivered a sermon that was meaningful to me, one in which I said what I wanted to say, in as clear a way as I knew how, just preaching the sermon was fulfilling.  My longing now is to do what am doing in a way that is genuine, helpful to others, and fulfilling to me whether or not there is some sort of recognition.

Now that I am clearer on who I am and what hills I am climbing, just continuing to climb satisfies my longings.  Life has already delivered far more than I ordered.  Even in the face of obstacles beyond my ability to overcome them, I refuse to give up hope.  As foolish as it may seem I still think I can, I think I can, I think I can.  If and when I can’t, there is for me a well of Spiritual strength that sustains my hope.

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.

How is it possible??  My oldest brother will celebrate his 80th birthday tomorrow.  When I was young, someone that old was an elderly person.  Dick is hardly elderly.  I suspect he could out work me any day in cutting and hauling firewood — and I am a mere child of 66.  He has confessed that he might lose track of where he put the chain saw, but age has little to do with that.

As the years have gone by, my perspective on aging has changed dramatically.  Dad died at 84, pretty much with his boots on.  He had worked hard during the day and died in the evening.  Mom lived to be 97 and was pretty sharp until the end.

This summer all my siblings will celebrate some significant event in their lives.  Brother Dick turns 80, Sister Gayle turns 75, Brother Dave and his wife Velda celebrate 50 years of marriage, Sister Tish and her husband Bill also celebrate 50 years of marriage.  I feel so young!!!

This exercise in looking back, in putting Mary Ann’s and my journey in a larger context began this afternoon when I put on a DVD titled “Celebrating North America’s Steam Railways.”  The series was done for Public Television.  It was a premium for making a donation.  It was long but very engaging.

As I watched it, I remembered my first years in college in 1961-3, when my folks would drop me off at the train station in Aurora for the trip to Union Station in Chicago.  There I got on the train to Milwaukee.  The transition from steam to diesel had come not so long before that time.

I remembered Brother Dick heading back and forth in the 1940’s on the train to school in Ft. Wayne, Indiana.

If I am remembering this correctly, my Dad said that he had not ridden the train.  He was born in 1901.  Horses were the means of transportation in his little country town.  He did fly in jet airplanes and enjoy some cruises later in life, but skipped the trains.

His Dad was born in 1860, not long after the steam trains began to be commonly used.  His Dad’s Great-Great Grandfather, Abner, fought in the Revolutionary War, before trains.  Abner was a Revolutionary War hero whose sword has been passed from oldest son to oldest son until it resides now with Brother Dick and his Son, Tom.

The historical context puts into perspective the challenges Mary Ann and I live with at this point in our history.  Abner lived through many battles and ended up losing a foot after his feet froze on his homeward journey to the six hundred acre plot where the town of Trumansburg (formerly Tremaine’s Village) now sits.  The name was misspelled in a post office record.

My Grandfather owned and lost what came to be known as the Gold Coast in Chicago.  The Depression took its toll.  He ended up a virtual hermit, separated from my Grandmother, who, rumor has it, lost either a sister or an aunt in a scandalous series of events resulting from an early version of priestly misbehavior.

My Mother and Father lost their first two children.  Glen Raymond died nine days after a premature birth.  There was no mention of Glen in our family until after Dad died, and Mom was in her 80’s.  When that death was finally revealed, she said that they just never talked about it after it happened.  Their second child was Lon Raymond.  He died of peritonitis caused by a ruptured appendix.  He was five years old.  He died on Christmas Eve. I cannot even begin to imagine the intensity of the pain they suffered.

Dad and Mom went through the Depression.  Dad lost his job, but they had managed to hold on to a a house that had been converted into apartments.  Whoever could pay a few dollars rent kept them going.  People would share commodities with one another.

One of my sisters cared for a husband with brittle diabetes for decades.  Another of my sisters cares for her husband who is diabetic, suffering from Dementia, incontinent and very heavy.  She just got out the hospital and rehabilitation after major back surgery.

Somehow, when placed in historical perspective, our circumstances seem unworthy of terrible lamentation.  Many who have gone before us have endured struggles far beyond anything we have yet experienced.  It is just our turn to live the life that has come our way.

Of course we feel sorry for ourselves at what has come into our lives and shaped them into something we could never have anticipated.  Parkinson”s is a devastating illness.  Against the backdrop of what those who have gone before us have suffered, we can hardly feel sorry for ourselves for long.

As have those who have gone before us, we are simply living our lives as they unfold.  We don’t decide what comes our way, but we live through what comes day by day, experiencing life fully wherever it takes us.  Somehow looking back and looking around, puts our situation into perspective.

It may not be the life we would have chosen, but it’s our life.

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Charlie was the sort of person most of us want to be.  He seemed to be a gentle soul, able to enjoy life and the people with whom he shared it.  He was only sixty-one.  The diagnosis was a shock.  By the time is was discovered, the Cancer had progressed to an extent that was just too far along to be stopped.  The end came so fast there was hardly time to come to terms with the diagnosis, let alone prepare for today, Charlie’s funeral.

The words spoken at the service were healing, powerful, just what was needed in the face of such a tragedy.  The death was real, no pretense about that, but its power to destroy was stolen from it by words of hope in the Someone who took some water and some dirt (see chapters One and Two of this series), made Charlie, and has not allowed him to cease even though the dirt and water will return to their source.

As I said in chapters One and Two. I know who and what I am at the core of my being.  Whether framed in spiritual or non-spiritual language, I am dirt and water sparked into a living breathing, self-aware someone, for reasons ultimately unknown.  I am left to celebrate who I am.

The problem is, there does not always seem to be reason to celebrate.  Charlie reminded me of that.  Charlie lived a full life, good relationships, wonderful adventures.  He had a good time and those around him did too.  He lived with integrity, humbly, and seemed genuinely kind and gentle.  Those closest to him may have experienced him differently.  He was not perfect.  No one is.  Those who think they are perfect have the gaping flaw of hypocrisy and denial woven into there thinking.  Today reminded me that I am not altogether who I want to be.  I had better get busy.  I am already five years older than Charlie.

Yes, I know who I am at the most basic level, but juat as is so with the seeds and plants my Dad and I planted and cultivated and the produce we picked, this particular gathering of dirt and water, known as Pete, is in process.  I am growing and changing.  I am not done yet.

I am living in the gap between who I have been and who I am becoming.  You are living in that same gap.  While brain cells last our lifetime and white blood cells may live only days, the average lifespan of cells in our body is about seven years.  That means not only am I dirt and water sparked into a living being, the dirt and the water are constantly being recycled.  I am not even the same dirt and water I was a year ago or seven years ago.  The spark of life is not just a switch that turns at the beginning of life, it is a process going on moment by moment every day of our lives.

As a full time Caregiver, I am left with the painful truth that I am not always the person I want to be.  I am living in the gap between who I have been and who I am becoming.  I am often frustrated by my own selfishness and impatience and weakness and thoughtlessness, by habits that I wish I could change and the almost daily relapses as I seek to improve.

There are some options available to me when I realize that who I am at a particular moment is not who I want to be.  I can with a chip on my shoulder declare to myself and everyone around me that it is just the way I am and that is that — take it or leave it.  I can melt into a pool of self-loathing that I am not a better person.  I can justify myself and deny that there is actually anything wrong with me.  I can resolve never again to be that person I don’t want to be.  I can claim to be the person I want to be, even though I may be far from it.

In the Journal called Weavings, (March/April 2009 issue) a writer named Parker Palmer calls the place between who we want to be and who we are, the tragic gap.  He frames it in this way: “On the long list of hopes that have driven our ancient and unfinished project called ‘becoming civilized,’ overcoming the tyranny of the primitive brain is surely at or near the top.  No one who aspires to become fully human can let the primitive brain have its way….”

Our task is to learn how to live in the tragic gap between the reactive primitive brain’s rule (fight or flight) and the rule of reason and thoughtfulness and morality, things that are located in the front part of the brain, that which makes us human, at least in physiological terms.

Our task is to live meaningfully in the space between that which we don’t like about ourselves and the person we want to become.  Rather than allowing our worst self to rule, we are called by our humanity, to grow into something more.  It begins with the painful recognition of the truth about ourselves.  Then, instead of callous acceptance or self-loathing, comes hope, expectation, new possibilities.

I am living meaningfully in what Palmer call the tragic gap. I am not the person I want to become.  I am not the Caregiver I long to be.  I am not done yet.  I am still growing and changing and becoming.  There is an odd mechanism for change pointed out by Parker Palmer.  Here is what he says: “There is no way to be human without having one’s heart broken.”  More on that in a future post.

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Count them, twelve prescriptions and three over the counter medicines make up Mary Ann’s daily regimen.  That translates into Mary Ann consuming twenty-one doses of that collection of meds most days. 

One medication is not supposed to be taken with food.  Another that is taken five times a day at two hour intervals, alternating between one half and one full pill, should not be taken with protein.  Another prescription is to be taken every four hours, a whole pill for the first two doses and a half pill for the last.  It is not to be taken too late in the day or if she is going to lie down for a nap (a need that comes without warning).  One pill is taken half in the morning and half at night.  Another is kept in her purse at all times to be used only if there is chest pain that is not diminished by taking a Tums, suggesting that it might be her heart.  She has to lie down to take it so that she doesn’t faint.  One over the counter med is to be mixed with juice or water and taken Tuesday, Thursday, Saturday and Sunday. 

One prescription is intended to raise her blood pressure so that she doesn’t faint.  Another prescription is intended to lower her blood pressure and help control heart pain. 

One prescription, when she first took it immediately after diagnosis, helped her keep movement, rather than freezing up.  It ceased to be helpful after about three years.  After a decade or so hiatus, it was added again to help diminish the extra movements produced as a side effect of the main medicine she takes to keep from freezing up completely.  Those extra movements are what Michael J. Fox often presents.  They are called dyskinetic movements, or dyskinesias. 

Side effects of the two meds that treat the movement disorder aspect of Parkinson’s increase the susceptibility to hallucinations.   The disease process itself of the Parkinson’s and Parkinson’s Disease Dementia produce hallucinations.  That means there is also a prescription to help diminish the hallucinations.  That is a medicine which can produce a fatal side effect in the elderly.  You tell me just how old we have to be to qualify for that side effect.

The brain chemistry of Parkinson’s produces depression.  Wouldn’t a person with Parkinson’s have to be crazy not to be depressed once in a while?  There are some prescriptions to help with that chemical imbalance.  The side effect of one is to make Mary Ann sleepy, but some of the others make her restless. There is something added to help her sleep. 

Two of the meds thin her blood and help reduce the likelihood of her having another stroke.  The lesion on her carotid artery has a rough surface — not a good thing.  The list of side effects of most of her medicines includes the matter of dizziness when standing up.   That means they interfere with her autonomic nervous system, reducing her body’s ability to adjust her blood pressure quickly enough when she stands up.  The disease process of the Parkinson’s and Dementia are complicit in that nastiness.  The result of the low blood pressure is that she faints, increasing the likelihood of hitting her head and having another stroke or breaking the skin and producing a major bleed. 

The newest prescription is a patch to be put on her back daily.  It is intended to help her memory and alertness.  It’s main side effect is vomiting.  I can hardly wait!  One additional side effect can be diarrhea, but then listed among the side effects of most of the rest of the meds is constipation.  She, of course, takes a couple of over the counter meds to counteract the constipation.   

I could go on!

Every Saturday my to do list includes filling the pill container, four compartments for each of the seven days.  Mary Ann used to do that for herself.  There was a time when she had even more prescriptions and multiple doses of some of them.  When she was having trouble getting them all organized and in their spots without missing some, she devised a numbering system for the bottles.  By the way, the numbers go up to eighteen, seven more than she has now.  The job of filling the compartments is now mine, but I still use her system.  I have to follow a meticulous routine with bottles set out in certain places on the table if there will be any hope of my getting the job done accurately. 

Once all the compartments are filled, we are ready for the week.  Each morning, one of the day’s containers is snapped out of the holder.  The pills must be distributed into the pill cup for the morning pills, taken with yogurt (with active cultures), juice and maybe cereal.  Pills from the other compartments are transferred into two pill boxes with timers, one set for two hours and the other set for four hours.   The timers beep at ten minutes, five minutes and three minutes before beeping for a full minute to tell us the time has come to take the pill.  It is a miracle that I haven’t thrown then on he floor and stomped on them to stop the endless beeping.  The bed time meds are left for another cup to be set out at the end of the day. 

Do I even need to tell you what the frightening error was that I made one dreary morning a few years ago?  I was sleepy.  I got Mary Ann to the table and filled the morning pill cup — with the night time pills!!!!!  It wasn’t until she was pretty much out of it and back in bed that I discovered what I had done.  I called the Pharmacist and we worked through the implications and what to do.  Gratefully, the doses were all low enough that no damage was done.  After that experience, I now make sure that all the lights are on, my glasses are on, I look at the pill container three or four times, and Mary Ann always counts the pills and examines them carefully before she takes them. 

Every once in a while, someone asks me what I am doing now that I am retired.  After they regain consciousness from my having whacked them up side the head, I explain gently that Caregiving is a full time job. 

The pills are a wonderful gift.  They have helped provide a quality of life we could not enjoy without them.  It is tough to live with them, but we can’t live without them. 

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.

He was a pleasant fellow, who came to our home and snapped lots and lots of pictures judging from the rapidity of the clicking sound his camera made.  He is a photographer for the Capitol-Journal Newspaper (http://cjonline.com), one of two photographers left.  There were seven when he started.  He is a young man (at least from my sixty-six year old perspective).  It could not have been very many years ago when he began his career there.

While I certainly cannot be sure that it will actually happen, my understanding is that the article should be in this Saturday’s issue.  The article was written by Linda, who has known us and our situation for many years.  Linda works in the office of the church I served for more than a dozen years.  She just graduated from college after a long hiatus to raise a family.  In graduating from college, she has realized a goal that has been with her for much of her adult life.

The article intends to look at the Caregiving role with an eye toward how meaningful it can be for the one doing the caregiving.   The pictures showed us in our normal mode, sitting at the table, then moving to the spot by the television.  Mary Ann looked very nice. Zandra, our bath aid, did a nice job helping her get ready.  One or our Volunteers was here at the time.  Whenever Cynthia comes, the ironing board and iron come out.  What a Gem she is!  It was a busy day.  Kristie, whom we pay to give the place a good cleaning once a month, was here, spreading that wonderful clean smell throughout the house.  Clarene came to stay with Mary Ann for a couple of hours in the afternoon.  Young came over for a while (bringing some Coldstone Creamery mix of chocolate ice cream and pecans).  Young and I worked on planning a special worship service. During that time, Ann came over to visit Mary Ann.  The morning had begun with Paul and Shari to the house for our weekly two hour Spiritual Formation that meets on our back deck.  Attendance was down by two.  Eva came to stay with Mary Ann during the group meeting.

Most days it is just Mary Ann and me.  Today there was a veritable explosion of activity.  It was a great day.  It was a very public day.  What a contrast to the early years, just after Mary Ann was diagnosed with Parkinson’s Disease.

For the first five years after diagnosis, Mary Ann would not permit any mention of the disease to anyone outside of our children.  Neither her Mom nor my parents were told about it.  Her Dad died just two weeks after our wedding.  Mary Ann has always been an extremely private person.  She didn’t want people looking for signs of the disease.  She did not want people relating to her as a sick person, just as a person. She did not want pity, nor did she want others talking about it when she didn’t want to talk about it.  It was her business.

She did allow me to tell a couple of folks so that I would have someone to talk with about what I was going through as we tried to incorporate the disease into our reality.  I was very grateful for that gift.  I process things verbally.  I needed an outlet.  On the contrary, she needed not to talk with others about it.

After five years, the symptoms and side effects of medications made it obvious that something was wrong.  It was about seventeen years ago.  I remember vividly sitting at an outside table at a beer garden in Gruene, Texas.  Mary Ann was resting back at the condominium.  She had given me permission to tell our closest circle of friends (three other couples) with whom we were vacationing.  Of course they knew something was wrong, but they appreciated knowing what it was.

This has never been an easy road, but it was much easier for me when the news was finally out.  It had been so difficult to pretend nothing was wrong when it was such a huge presence in our lives.  Finally I could share it with my parents and siblings and friends and parishioners.  I have little doubt that it was easier also on our children to have it out in the open.

With the information no longer hidden, people could more openly offer their help.  Mary Ann’s co-workers could be more openly supportive of her.  I didn’t have to make excuses any longer when we could not attend activities.  At that point Mary Ann was working full time to help get the kids through college.  She was exhausted at the end of the day and needed weekends to recuperate.

When we moved here, the Parkinson’s was public knowledge.  As the disease progressed and the side effects of the meds increased, help became a necessity.  Without it, I could not have continued to earn a living.  The cost of full time care for Mary Ann while I continued to work would have come to close to my entire salary.  For me to stop working would have eliminated any income on which to live.  It was at that point that members of the congregation came to our rescue.  Margaret set it in motion.  Mary Ann has called them her angels.  If they were her angels, Carol was the archangel.  For at least six years, Carol single-handedly scheduled up to sixty-five different Volunteers, using a spiral bound pad of ruled sheets.  She scheduled evenings and weekends and weekdays, overnights.  There were people who did every imaginable task. The last two years before I retired, three people, our daughter, Lisa, Mary and Edie used the website http://www.lotsahelpinghands.com to manage the Volunteers.  Now that I am retired and doing full time care, Mary is still scheduling a few folks who continue to come so that Mary Ann and I can have periodic breaks from one another.

When the Volunteers come to the door, we might be in a situation that does not allow either of us to come to the door.  They all know, that if we do not come to the door, they should just come on in.

Understand just how dramatic the transformation has been in our household. We have changed from a completely private household with a very private person, both of us keeping a huge secret, to a very public place in which walk-ins are welcomed.

Mary Ann and I have grown in the process.  We have marveled at the generosity that has come our way now that the secret is out.  In spite of the constant stream of news to the contrary from the media, we have been surrounded by very good people, who will do almost anything to help when they see a need.

What used to be secret will, apparently, be in the newspaper this Saturday.  A few months ago, I was invited to do a live hour long interview on the radio by phone with Starr and Bob Calo-oy who do a weekly radio show in San Antonio, Texas.  The show is called Caregiving 101.  I am writing this blog, posting almost daily on the various experiences we are having as we deal with the presence of Parkinson’s in our household, taking a toll on Mary Ann as it progresses.

What was private is now public.  As the Baby-Boomers come along behind us (we are a few years ahead of the bulge), more and more will be impacted by chronic and progressive illnesses.  More and more people will need care and will become Caregivers.  For most of us, it just folds into our lives without invitation.

The public forum allows us to talk and listen and learn so that no one has to do this alone.  The time for secrets is over.  Good people want to help.  Go public.

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

There was a four night special on Alzheimer’s Dementia on HBO about a week ago.  A number of those who are in the online group for casegiving spouses of those with Lewy Body Dementia had no interest in watching the series.  Why?

We don’t subscribe to HBO (too tight to pay for premium channels), so it was not an option for us.  I don’t know whether or not I would have watched it if I could.

Especially when I was in the thick of ministry in a demanding parish, I had no interest in watching soap operas or reality television shows.  One reason was that I experienced on a surprisingly routine basis drama in people’s lives that matched or exceeded what was portrayed in the television stories.

One of the characteristics of the pastoral ministry is that due to its nature as a helping role and the concomitant vow of confidentiality, people often revealed what might be called their “dirty laundry.”  Sometimes they confessed their darkest side in search of forgiveness.  Often they revealed the worst of their family secrets. There are many revelations that I will take to my grave.

It was hardest to deal with revealed secrets that I was bound to keep even when interacting with other family members who were not privy to whatever it was.  I heard things that would not have made the latest soap opera because writers would have considered them too hard for the audience to believe.  You know those things we assume could never really happen, at least not to anyone we know?  They are happening in the lives of people all around you, people you could never have imagined could be involved in such behavior.

Having that window to the reality in which I was living, I neither needed nor wanted to immerse myself in some fiction attempting to provide me with a vicarious experience of the dramatic.  Real life provided enough drama.

The reason those online Caregivers were not interested in seeing a special on Alzheimer’s Dementia (AD), is that they are living the drama themselves.  For that group it is Lewy Body Dementia (LBD), which is different from AD in some respects.  The confusion and memory problems and hallucinations come and go, sometimes in minutes for those with LBD.  There may be a decline that is followed by a return to  former alertness.  There is a greater sensitivity to a number of medications, sometimes the very medications needed to control some of the symptoms of the disease.  Parkinson’s or Parkinsonism is often a part of the LBD experience.  There are very many characteristics that AD and LBD have in common.

Those who live with AD or LBD or PDD (Parkinson’s Disease Dementia – a Lewy Body Dementia that emerges after Parkinson’s has already been diagnosed), do not necessarily want to watch their struggle on television.  If anything, they want television to provide them some escape from Dementia World.

I have a thirst for information that might have led me to watch the Alzheimer’s Project on HBO, if we had HBO.  Information helps me objectify what we are going through.  Information takes away some of the apprehension because it demystifies the Disease.  It reduces its power to intimidate.  It becomes more of a matter of fact part of our lives, less able to blind side us with surprise attack of some sort. Of course anything can happen at any time, without warning, but at least we know what some of those “anythings” are.

It is fine to cut out articles and inform Caregivers of programs about the disease their Loved One is battling.  Just don’t be offended if they don’t read it or watch it.  They may be on information overload just dealing first hand with the disease.  They may, as do I, find the information a helpful tool for bringing the disease down to size.

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.