April 20, 2010

Infection Diagnosed

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , |
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I have to wonder how long this has been going on.  I wondered about it right after coming home from the hospital last November.  There were none of the usual symptoms that were different from the symptoms of the problems already diagnosed and being treated.  It seems unlikely to me that such an infection could have been going on since November, although there is a chronic version of this diagnosis.

Hospice Nurse Emily phoned shortly after lunch time today to report that Mary Ann’s urine had tested positive for a Urinary Tract Infection [UTI].  In fact it is apparently a fairly serious one.  She reported that the doctor had insisted that Mary Ann manage to get in both the morning and evening doses yet today.  We have now done so and Mary Ann is in bed.

The medication is an anti-biotic called Cipro.  It is a strong anti-biotic whose sheets of warnings and side-effects (three pages of small print) read like a Stephen King novel.  The good news is that the Hospice doctor has a current list of all Mary Ann’s meds and a chart that includes all her medical problems.  The Hospice Staff have regular Team meetings on each patient.  It is a fairly small Hospice organization, serving only about thirty patients.  We regularly get a copy of the Team meetings.  Each report includes hand-written notes by each member of the team, including the doctor.

It certainly is a challenge to discern the signs of a UTI when every one of them matches something that is normal for someone with Parkinson’s Disease, Heart Disease, Parkinson’s Disease Dementia (a Dementia with Lewy Bodies), Hypertension, Orthostatic Hypotension, Chronic Kidney Disease, Hypothyroidsim, Urinary and Bowel Incontinence, a stroke victim who has also had a life-threatening bout with Pneumonia.

Here is an interesting item on the list of those symptoms that are often indicators of a Urinary Tract Infection:  “Mental changes or confusion (in the elderly, these symptoms often are the only signs of a UTI).”  Imagine trying to catch that symptom in someone with a Lewy Body Dementia that has as its central symptom, mental confusion that comes and goes.

On the Medline Plus web site from which I got the information in this post there is a list circumstances that increase the likelihood of getting a UTI.

The following also increase your chances of developing a UTI:

  • Diabetes
  • Advanced age (especially people in nursing homes)
  • Problems emptying your bladder (urinary retention) because of brain or nerve disorders
  • A tube called a urinary catheter inserted into your urinary tract
  • Bowel Incontinence
  • Enlarged Prostate, narrow urethra, or anything that blocks the flow of urine
  • Kidney stones
  • Staying still (immobile) for a long period of time (for example, while you are recovering from a hip fracture)
  • Pregnancy

Mary Ann is not pregnant, does not have a prostate gland or kidney stones, nor is she diabetic, but all the rest fit to one degree or another.

I will admit that this diagnosis seems like good news in the sense that it provides a glimmer of hope for some positive change.  Mary Ann declined pretty dramatically after her hospital stay (during which a catheter was used).  It would be wonderful to be surprised by improvements coming with progress in treating the UTI.

Mary Ann (and I) got a pretty good night’s sleep last night.  She seemed to be doing somewhat better today but still had some confusion periodically.  There was a little more of the fainting and bowel activity.  She had a nap of a couple of hours during the mid-day.

We had a special treat today.  This afternoon Pastor Mike and Judy came to visit for a few hours.  They are warm and caring, as well as strong and intelligent people who have made their mark for great good in a central city area in Kansas City, Kansas that has had all the struggles that often come with older city neighborhoods.  I have tremendous respect for them as they have stayed engaged with and present in that community for decades.  Without fanfare or tangible rewards they have continued to serve in creative ways people sometimes gasping for air just to keep from drowning in a sea of failed attempts at trying to get by on their own.

We have known Mike and Judy since the early 1970’s.  I was a few years ahead of Mike at the Seminary we both attended in St. Louis.  Mary Ann and I have  listed Mike as the requested preacher at our funerals.  He and Judy have known Mary Ann since before the Parkinson’s.  As well as the personal fondness we have for them, they share with us an understanding of church that is deeply rooted in some core faith issues.  We have great conversations.  Judy especially made a point of talking with Mary Ann one on one, so that Mary Ann’s thoughts and words were not lost in the energetic talking of three others.

After spending time at the dining room table talking with Mike and Judy, we moved on to the deck.  It was a glorious day here, about 70 degrees and abundant sunshine.  As we sat on the deck, the pair of Mallard Ducks wandered back and forth, in and out of the waterfall, munching at the ground level platform feeder a few times.  They just sort of hung out with us, maybe twenty feet away.  The birds were singing their spring songs probably meant to impress some potential or current mate.  At one point a black Grackle (with that shiny deep blue head), Blue Jay, Cardinal and bright yellow Goldfinch were in view at the same time in the branches or on the ground in the immediate area.  A couple of Robins were nearby also, as well as the Mallards.  It always strikes me that colors no designer in his/her right mind would put together in the same space, work very well when in proximity in a natural setting. It would seem there might be some other artist at work weaving colors together.

Yesterday, our system here seemed on the verge of becoming impossible to sustain.  A good night’s sleep, some time during Mary Ann’s nap to get a few sort of recreational chores done (filling bird feeders, more weeding in the waterfall area), relaxed time visiting with good friends, has pulled us from the verge of impossible back to possible.  Since we live in a fairly small space between possible and impossible, I will not venture a guess as to where we will be tomorrow.  We will deal with that when tomorrow becomes today. Speaking of which — it is time to go to bed.

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.

 

March 24, 2010

Too Quiet!

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The laughter therapy program has hit the road.  The Joy/Terry/Cherri serum moved on this morning.  I have suggested to them that they designate themselves The Three Therapists (like the three Tenors) and develop a supplemental source of income.

Mary Ann was determined to get to her Bible Study this morning.  We left for church while the three were still at the house.  Actually, it made the good-byes a little easier. The process of getting out of the house this morning resulted in our being a few minutes late for the Bible Study. She had a mild fainting spell.  Mary Ann hates being late, but the group was tolerant of us when we arrived.  I felt bad interrupting, but I knew Mary Ann needed the time with them.  Apparently, she did reasonably well there.

After the Bible Study, we headed to McFarland’s to eat.  Mary Ann did reasonably well there also.  At the end of the meal, she seemed to weaken.  I needed to accept the help of a thoughtful customer to get her coat on as she tried to stand in front of her wheel chair.

It was not long after we got home that she ended up in bed napping.  That happened just at the time Hospice Nurse Emily arrived to check in and do Vitals.  Mary Ann’s blood pressure was about what it should be for a twenty-five year old.  It vacillates so much that I am seldom surprised by how high or low it is when measured.

Mary Ann slept soundly for a few hours this afternoon.  She got up for supper, but was in bed again fairly early this evening.  So far she seems to be sleeping well.

While the Hospice Nurse was here for a while, and the workers were using power saws, providing some noise and activity, it just seemed too quiet around here with the crew from the north on their way back home.  I realize just how boring life is much of the time for Mary Ann.

Certainly all the activity did wear Mary Ann out.  It will be interesting to see how much sleeping she does in the next couple of days.  It is a very good tired.  What a wonderful way to become worn out.  I suspect that the endorphins released by the laughter are still working their healing magic inside of her.

The challenge for me will be to find ways to bring interest and stimulation into her days.  It is a daunting challenge.  I have tried before with very limited success.  The limitations that have come with her recent decline have made the challenge even more difficult.

The day will be busy tomorrow. At the end of next week, Daughter Lisa and the family will come to stay with us for about a week.  Combined with the remodeling project, I hope there will be enough to keep her engaged.

Right now, we need some prayers for Granddaughter Chloe (11 years old), who has not been able to shake a undiagnosed problem with nausea that has been going on for a couple of weeks.  Prayers are for a clear and concise diagnosis and effective treatments, please.

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.

 

March 23, 2010

Cure Discovered

Posted by PeterT under Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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The cure for what ails Mary Ann has been discovered.  Their names are Joy, Terry, and Cherri.  She has laughed and talked and asked questions and given answers. The feisty lady I married has returned.

At one point today we were all laughing so hard, that I, for one, had to wipe watering eyes. Mary Ann was laughing just as hard.  It is a wonder that we weren’t thrown out of Baskin & Robbins for rowdy behavior.

Another time one of the three said to Mary Ann she could hardly believe that she had been married to a Minister for 44years, to which Mary Ann said “Me, too.”  Mary Ann asked one of the three how someone in her circle was doing.  It was a completely appropriate question coming from a full awareness of their history together.  I could  hardly believe my ears.

When Mary Ann and I have been alone together today, or occasionally when she talked quietly with me, she was having mild hallucinations about one thing or another.  She wanted me to clean up the pile of poop on the carpet.  She was looking at the transformer on Cherri’s little Notebuook computer.  When engaged with her three friends, she was completely lucid and able to track what was going on.

Mary Ann slept like a log last night.  The Girls wore her out.  It was a good tired.  It allowed her to sleep well.  This morning she was up for an hour or so before Bath Aide Zandra came, but we held off on taking her morning meds.  As hoped, Zandra had no problems with her, there was no fainting.  She took her meds after the shower/hair washing/dressing time.

Mary Ann did have a mild fainting spell when we were all gathered in the kitchen, having some breakfast, but the girls had seen that before a time or two when we visited them up north a couple of years ago.

After talking for a while, we headed out for a lunch at a great sandwich place called the Classic Bean.  We had a good time there.  After that Mary Ann had an appointment with her Primary Care Physician.  Blood tests had good numbers, there was no need for any change.  Since we see the Cardiologist and Neurologist regularly, he did not mess with those meds.

Next came the trip to Baskin & Robbins, described above.  She wolfed down two scoops of Gold Medal Ribbon as fast as I could get the spoonfuls to her mouth.  We did a mini-tour of a couple of spots with great views and returned to our house for more talk.  In the morning and again in the afternoon, I retreated to my office to give them time to talk without a guy present.  Some things are just better not to know!

I had gotten a frozen Lasagna, a loaf of Asiago Cheese Faccaccia bread and a large container of salad greens when at the store yesterday.  For supper we had a buffet style relaxed meal with a bottle of good red wine.

The three are planning to leave in the morning to head back to Northern Illinois.  I think they were thrilled with how well Mary Ann did while they were here.  A couple of them have been reading these posts, so they were expecting a much more subdued Mary Ann, far less able to be involved and responsive in their conversations with her  The Mary Ann they have known for all these years emerged to spend time with them.

While none of us can stop the disease process in its tracks, the Parkinson’s Disease Dementia took a beating these last twenty-four hours.  For a while it lost its grip and Mary Ann returned.  I will be bold in lobbying for more visits as the months go by, assuming Mary Ann stabilizes.

When the mail came today, there was a wonderfully goofy surprise.  My Sister Gayle saw something she just had to get and send to Mary Ann.  It is a stuffed Donald Duck about 16″ tall.  When a button is pushed, he sings “Polly Wolly Doodle” and walks around.  If he is picked up by the ears, he screams, “Put me down!”  Needless to say there was more laughter when Donald performed.  Gayle knows Mary Ann well.  There were a number of individually wrapped Fannie Mae chocolate candies included in the package.

Mary Ann is in bed now and seems to be settled.  She has to be very tired with such a full day of activity.  As always, I will not presume to predict how the night will go.  I will just hope she sleeps well.

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.

 

March 22, 2010

Teens Arrive! Laughter Begins!

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Uncategorized | Tags: , , , , , , , , , , , , , , , , |
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I am witnessing a working Time Machine (the machine itself being completely invisible).  There were sitting at the table tonight, gathered around a couple of pizzas, four teenaged girls talking and laughing as if their bodies were not a number of decades older than that.  Mary Ann was fully engaged.  Her voice may have been soft, but she was a part of it.  She laughed along with the rest.

These four have known each other since the Fifth or Sixth Grade.  They have a world of memories since they went all through high school together.  They have kept in touch throughout the decades that have passed since then.  They graduated from East Aurora High School (in Northern Illinois) in 1959.  Every time the four of them get together, they continue on as if they have barely taken a breath since their last visit.  It is one continuing conversation.

They traveled a long way to come and see Mary Ann.  I know it means a great deal for her to see them again.  Of course, painfully, it will likely be the last time they get to be together.  I would not, however, bet on it since Mary Ann has demonstrated such resilience over the years.

Mary Ann began the day early again.  After the often fought battle to get the last hour or two of sleep in the morning, she was alert and responsive.  Again, as has happened often recently, she fainted a number of times on the stool as there was some otherwise healthy intestinal activity.

Volunteer Jan had arrived and took over after the fainting spells subsided.  Again, it the fainting seems to associate with both the kicking in of meds and intestinal activity.  Jan washed her hair and did her nails for her, while I headed up to the lake for a while.  The lake was beautiful.  I was immediately treated to views of some raptors, hawks, an eagle.  One of the hawks could have been a leucistic Red Tail Hawk.  I do not know enough about birds yet to be certain about that.  There were aome of those beautiful White Pelicans, flying in a relaxed formation of about twenty, circling over the lake, and over me at various times.  Again the bright white contrasted by the black portion of the wings that span five or six feet made watching them a breath-taking experience.

There was another less pleasant experience at the lake.  Remember the snow that I shoveled yesterday?  There was snow at the lake.  I drove only on paved roads, with little enough snow and slush and ice on them to avoid problems.  I got to my spot in the parking lot near the dam without trouble.  When I left, I went out the other side of the lot, up that road.  There was a fairly thin layer of wet snow on it.  I did fine as I approached the last few feet.  The top of the snow did not reveal that the road beneath dipped.  When I moved into that last bit of road, the van stopped moving.  I ended up stuck in a snow bank that did not reveal itself on the surface.

The simple solution was not so simple.  I tried to back out so that I could back down to the lot and go up the road on the other side.  The van would not budge.  The snow was wet enough that it just packed and formed an icy base under the wheels.  Having learned to drive in the winter in northern Illinois, my pride was hurt.

There were no others on the road in the area, until a passer by in a four wheel vehicle stopped.  It took a very long time of studying the predicament, trying to rock the van back and forth (tough with an automatic transmission).  Finally with the good Samaritan pushing on the front of the van, I was able to begin backing down the hill.  Once back in the parking lot, I was able to get back up the hill using the road by which I had come down to the lot.

I stopped for groceries in preparation for the visit of Mary Ann’s Friends, and made it back home.  After eating, Mary Ann stayed up much of the afternoon.  She did nap in her chair with her head on the rolling table that sits in front of it.  By the time Joy, Terry and Cherri arrived, she was rested enough to greet them and enjoy them.

Two are in the hotel and one staying downstairs.  My hope is, of course, that Mary Ann will sleep well tonight so that they can continue tomorrow from where they left off tonight.  The construction will continue with sanding sheet rock joints and the multiple corners tomorrow.  We will see if the construction activity moves the group to the hotel lobby seating area.  The birds entertained today.

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.

 

January 28, 2010

Hallucinations Continue to Increase

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , |
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She asked, “Do you need some help?”  She was at the table for pills and breakfast this morning (6:15am) looking across the table at someone or something.  I asked her who she was talking to. She answered, “Santa Claus.”  She was serious.

Then she asked if I had talked with our Daughter, Lisa, last night.  She heard Lisa saying, “Help me.”  Lisa, of course, lives in Kentucky.  She saw Granddaughter Ashlyn, who also lives in Kentucky, on the other side of the table doing something, she wasn’t clear what. I am not sure I convinced her that Lisa and the girls were not here in the house.

I had gone to bed extra early last night in hopes of catching up on some sleep, but it was another difficult night.  She was up a number of times. Twice (in the 3am to 5am territory) she got up for some reason and ended up on the floor next to her bed.  She was not hurt at all.  I was having some distressing back/rib pain that made it unrealistic for me to try to lift her.   I pulled over the walker and tried to position it and hold it down so that she could very slowly and with great difficulty pull herself up enough each time to get into a sitting position on the bed.

The Bath Aide, Zandra, came to give her a shower and wash her hair later in the morning.  Zandra commented that it was the first time Mary Ann had seemed to be almost completely unresponsive to her.  She also reported that Mary Ann had been handling the thin gold chains she often thinks she has in her hands.  When we talked about the day at supper time tonight, Mary Ann said she could not remember Zandra being here at all today.

She certainly had no memory of the rest of the day since she went down for a nap around 10am or 10:15am,and did not get up until 4:50pm.  She only ate a small container of yogurt and a muffin for supper.  She watched some television and we moved into a time of intestinal activity that included a number of trips demanding my help in obtaining results concluding with some unaided production.  Hopefully, she will feel better for a while.  She has settled on to the bed at about 7pm and is napping again.  I don’t know if she will get up for a while later or l just get up to take her bedtime pills at 8:30pm, change for bed and then lie back down for the night. The odds of Mary Ann sleeping much tonight are slim to none.

During the day there were two Volunteers, Rebecca and Clarene, with Mary Ann at different time, one right after the other.  While I had the benefit of the time away, Mary Ann and each of the Volunteers had no time to enjoy one other’s company.  She slept through the entire time each of them was there.

The time today provided me a chance to lunch with a good friend.  It was helpful to be able to talk openly about lots of the dynamics in our lives.  Later, there was  long conversation over coffee with another good friend.  It was especially helpful to have those times in safe settings with trusted friends to process the more challenging place to which we have come in our household at this point in our journey.

This afternoon the new batch of Seroquel arrived.  Tonight I will increase the dosage from 100mg to 125mg.  I will continue that for three days, then move to 150mg.  To be honest, I don’t actually expect it to make any difference in the hallucinations.  I could be wrong about that, and I would like very much to be wrong about that.  When we tried increasing to 125 last fall for a couple of weeks, it did not seem to make any difference at all.  On the hopeful side, it has often been our experience that a medication had virtually no effect until it reached the therapeutic level.  Maybe 150mg will take Mary Ann across a threshold that 125mg did not yet breach.

I am concluding this post earlier in the evening than usual, hoping, not expecting, but hoping for a few hours of uninterrupted sleep.

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.

 

October 26, 2009

First Travel Day Went Well

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I am at a computer in the business center at a LaQuinta motel in Shawnee, Oklahoma.  We put on CD’s of short stories.  They were a little strange, but kept our attention as we traveled.  It is a clear shot to Oklahoma City on an excellent Interstate with minimal traffic.  The Flint Hills remain a spectacular sight.  

The rest area at which we stopped had family bathrooms available.  What a Godsend!  My stress level plummets to nothing when I see that we have a family bathroom available rather than trying to find someone to guard the door to a busy women’s restroom while I help Mary Ann. 

It was wonderful to surprise good friend John by appearing at this door for the birthday open house on the occasion of his sixtieth.  I had sent the return comment card ahead in the mail since I wasn’t sure that this would all work out, and I wanted to mislead them into assuming that we would not be there for the open house.  Packing the car the night before actually worked.  We got off at a reasonable hour and made to his home within minutes of the start time of the open house. 

By the way, we were able to include a stop at the Braum’s Dairy Store in Blackwell, OK.   Mary Ann got two scoops of Butter Pecan — there is none better.   I had a two scoop Hot Fudge Sundae covered with salted pecans!  Just to make clear that we know the ice cream decorum — it was after twelve noon (by minutes).   All is well with the world!

It was a treat to see Peggy and reconnect after thirteen years.   I had the joy of being one of three pastors who officiated in their wedding.  After having such a clergy presence, they are assured of being stuck with one another for many years to come.  Somehow, I think they are okay with that!

A special treat was getting to see and talk with John’s Daughter, Hope.  Since I lived in their home for the first few months of my ministry in Bethany, Oklahoma (an inner suburb of OKC), I got to know Hope and Joel during their early years.  Hope was fiesty!  That, my friends, is an understatement.  She was always intriguing and someone to be reckoned with even as a child.  The energy and intelligence and drive were apparent from the outset.  She has turned into an engaging adult who is realizing all that potential — of which the pinnacle is about as cute and pleasant little twenty-one month old little boy as could be imagined.

There was one surprise for me.  After a time, Peggy came out with what was obviously a Christmas present, wrapped nicely, topped with a flat bow that was covered with dust, as in a well-aged bottle of vintage wine.  It turned out to be a Christmas present that they had gotten for me, wrapped and marked with my name in 1996!  By the time it was ready to be given, we had already moved away.  It just never found its way to me — until now.  It was a nicely framed wedding picture of John and Peggy, looking young and excited as they began a new life together.  The picture, of course included the three clergy who joined forces to set them on the right path.

While the folks who attended were from John and Peggy’s life after we moved away, one blast from the past was visiting with Barry, a fellow pastor — who is the consummate smart aleck.  What great fun to see him again and pick up with the bantering as if no time at all had passed.  Barry lost his wife only months ago after a long and very hard battle with diabetes.  This particular experession of the disease did its worst for almost as long as Mary Ann has been dealing with the Parkinson’s.  Pat lost her sight (for the most part) pretty early on.   Barry also has spent many years doing full time ministry and full time caregiving.  There is an instant connection among those who fully understand the dynamics of caregiving from the Caregiver’s perspective. 

After a stop at a Denny’s, eating too much food packed with unhealthy carbs, we have settled in at the motel.  Shawnee is about an hour closer to Hot Springs than John and Peggy’s home in Edmond.  We will not have to drive in any of the OKC city traffic tomorrow.  The balance of the trip should be pretty manageable — although I would not presume to predict how well tomorrow will go.  I am just grateful that we have made the first day without serious problems. 

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.

 

September 20, 2009

Caregiver’s Life Preserver, Vol. 4 – Followup

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Remind me how much I loved weeds and bugs as a child.  I seem to remember writing something about that in an earlier post.  I just about had my fill of weeds and bugs on this trip to St. Francis of the Woods.

I have always loved the outdoors, but I have also always loved being comfortable.  Trudging through waste high, sometimes head high, weeds for a couple of hours, bugs surrounding me, checking me out at close range, stretched my idyllic view of the outdoors to the limit.

I remember walking the woods at my parents’ place in Northern Illinois, loving everything but the deer flies.  They kept me from idealizing the outdoors beyond reality.  Then there was the Poison Ivy.  The world of nature can be a hostile place.

This trip to St. Francis of the Woods was different from the last few times I have gone.  When possible, I usually go after the first frost and before the bugs have come out in the spring.  Cool and crisp air, dried weeds and clear skies have welcomed me the last few years.  This time it was warm, muggy and cloudy.

With that introduction, you might suspect that this trip was not a good experience.  It was.  First of all, while I am concerned for the environment and the well-being of all creatures, insects included, it seems to me that the person who invented the insect repellent Deet should be awarded the Medal of Honor.  I was not bitten by one mosquito, nor did I find one tick on my body, and while the bugs were everywhere, when they landed on me, they didn’t stay for long.

One benefit of coming at this time of the year was that there were flowers everywhere.  The sights were beautiful.  The flowers drew butterflies.  There were all sorts of butterflies of different sizes and colors.  Every once in a while one or two would land on me as I walked through the weeds.  There was one particular species that caught my eye.  It was probably a Fritillary, but I am way outside of my comfort zone in naming a butterfly other than a very few.  It was fairly large, and the brightest, almost, iridescent orange.  There might be as many as three flying around one another in a cluster.

There are now a couple of bee hives at the corner of one of the fields that I walk through.  I gave them a fairly wide berth.  Through the binoculars, I could see hundreds of bees flying in and out and all around the hives.  I am not particularly fearful of bees, but I didn’t want to have any unnecessary encounters by moving into their home territory.  I noticed as I walked through a nearby field, that the flowers were covered with bees.  St. Francis should have a great harvest of honey when the time comes.

The first evening’s trip through the woods provided no bird sightings at all.  The next day, there was more activity.  I was snorted at by some deer hiding in the woods as I walked by.  At one point a couple of does ran through the weeds in front of me from the woods on one side to the woods on the other.  There were a couple of groups of White Pelicans flying overhead, appearing to be headed the wrong direction for a fall migration.

It was hard to find a spot to put my three legged stool so that I could read a bit.  I didn’t want to be completely buried among the weeds.  I managed to find a spot with short enough weeds that I could sit, eat an apple and then read a very few pages.  The muggy, warm air and flying bugs around my sweaty brow made it uncomfortable enough to discourage me from staying long. I did catch sight of a flock of Common Nighthawks going by.  They are not often seen in the daytime except when passing through in the spring and fall.  Nighthawks are in a family of birds called Goatsuckers.  I just get a kick out of knowing that and saying the word “Goatsuckers.”  I need to check online some time to find out how that name was chosen for them.  I wonder if it had anything at all to do with goats?

I walked down to a newly discovered pond very close to the cottage I was staying in.  The pond was sort of ugly and messy looking, very small.  I saw a large turtle sunning itself when I came closer to the pond.  It slid into the water since I was too close for comfort.  I looked at the water through the binoculars to see if I could locate more turtles under the water.  Then I saw him.  I can’ t really know for sure how big he was, since he was just under the water at the edge of the pond nearest me.  The light refracting through the water can make something look bigger than it is.  It was a Snapping Turtle that appeared to be close to two feet long and a foot and a half wide.  He looked far too big to be living in such a small pond.  I watched him for a long time, and when he moved, I was glad he turned away and moved down farther into the pond.  I would not have been interested in him coming my way.

The most meaningful and valuable time on this retreat was the four and a half hours of catching up with a friend from the Oklahoma City area that I hadn’t seen in over thirteen years.  I have to say that John is as close a friend as I have ever had in my six and a half decades.  During the nine years in Oklahoma City, John and I spent many hours early in the morning at Ingrid’s German Deli talking about our faith and journey we were on living it out, John caring for Sherrie, dying of Cancer, and me dealing with the impact of Mary Ann’s Parkinson’s on our household.

When I went on ahead of the family to start serving the congregation in Bethany, Oklahoma, I lived for five months with John and Sherrie, and their children, Hope and Joel.  I cannot imagine more gracious hosts.  Their spirituality was a marvel to behold.  I have been around lots of folks who are committed to their faith, and sharing it with others.  John and Sherrie did it with such genuineness and humility that those around them never were made to feel inferior.

I had the privilege of ministering to and being ministered to by Sherrie as the Cancer entered her life and became the means through which she touched the lives of so many on her way to her death — and life with the Lord on the other side of death.  I had the additional privilege of conducting her funeral, attended by so many that the Sanctuary couldn’t hold them.

If that was not enough, I had the joy of performing the marriage of John and Peggy, as each was led to the other at precisely the right time to begin building a new life together.  It was refreshing to hear how their spirituality has grown and how their life together has unfolded in the years between then and now.

Not only did the retreat provide the refreshment that comes from engaging the natural world at close range, being fed by a meaningful friendship, but I probably accumulated almost twenty-four hours of uninterrupted sleep in those two nights.  This morning there was a gentle rain with soft rumbles of thunder on occasion in the background, providing the perfect setting for lying in bed, sort of semi-conscious, just savoring the moment.

All went well with Mary Ann while I was gone.  Daughter Lisa had some good quality time with her Mom, and Son Micah, Becky and Chloe were able to come over so that we could eat Pizza together tonight.

The time away provided the opportunity to think through how things are going for Mary Ann and me.  As always, there has come a renewed resolve to be more effective as a Caregiver.  Whether that resolve will result in any changes in what I do and how I do it remains to be seen.

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.

 

August 22, 2009

Caregiver/Spouse’s Look Back at Journey.

Posted by PeterT under Daily Challenges, Help from Others, Information on Parkinson's, Meaningful Caregiving, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , |
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Last night when sharing our history with our hosts at dinner, the look back opened a process that has continued today.  I asked Mary Ann if she was comfortable or uncomfortable with the conversation last evening.  The questions of her were direct and personal.  She said that she did feel comfortable. 

As I mentioned in last night’s post, Mary Ann was candid about her feelings.  She was clear that she was not resentful toward God for her situation, but she was resentful toward me for moving the family from what had been home for fifteen years.   

When we moved from Kansas City to Oklahoma City, I moved five months sooner than Mary Ann and the kids.  They needed to finish school (Lisa, her Senior Year in high School and Micah, his Eighth Grade year at a Kindergarten through 8th Grade school).   

It was shortly after I moved to OKC that Mary Ann phoned from Kansas City with the news that she had been diagnosed with Parkinson’s.  Her memory of the move is colored by the pain of that diagnosis, having to deal with her feelings without my presence for support.  She had the whole load of the family while trying to process that news. 

What, in my estimation, made it more painful was that Mary Ann was adamant about keeping the diagnosis a secret.  That secret was kept through the move and on into our new life in OKC for a full five years. 

With little stamina for involvement with others since she also worked part time at first and then close to full time for the last six of our nine years there, it was hard for her to develop close friendships from which she could draw support. 

It was during that time that we experienced very poor medical care from Neurologists who had little knowledge of Parkinson’s other than the very basic medication addressing only the motor symptoms.  Since she has the early onset variety, there are more complexities than presented when it is diagnosed later in life. 

We managed to get to the annual Parkinson’s Symposium at the University of Kansas Medical Center most years while we were in OKC.  As a result, we had access to the latest and best information on Parkonson’s Disease and its treatment.  We seemed to have more information than any of the Neurologists to whom Mary Ann went during those nine years in OKC.  One Neurologist had little to say in each appointment (ten minutes, sitting across from us at his desk).  He seemed mostly to be asking us how often we thought we should be taking the one basic medicine.  The next Neurologist questioned whether or not Mary Ann had Parkinson’s and concluded that the fact that the medication for Parkinson’s seemed to be working was all in her head.  He made the gesture folks use to indicate that someone is crazy.  Then at the end of the nine years, Mary Ann was hospitalized in Tulsa in a new Parkinson’s program.  The point of the stay was to work out the medicine regimen.  The staff administering the medication missed the timing of doses, the Neurologist dismissed a basic concern for timing the medicine away from meals high in protein (regularly reaffirmed in the literature and the presentations at the Parkinson’s Symposia).  Mary Ann ended up with a complex combination of regular and timed release versions of the one basic medicine.  The new regimen simply did not work.  She became very debilitated quickly. 

It was at that time that the move to the parish here in Kansas came.  Mary Ann commented last evening that the move back to Kansas, even though not back to Kansas City itself felt good to her.  She liked being close again to our friends in Kansas City.  Mary Ann is not the sentimental sort.  For her to say that was a very significant affirmation of that friendship. 

When we moved to here, Mary Ann went to KU Med Center and some of her best years followed.  She was willing to be open about the diagnosis.  The latest of the medications that help the basic one work more effectively worked well at controlling her symptoms.  She did not work any longer and had time to get to know people here.  When finally the Volunteers were needed and began coming, friendships grew at a rapid rate, many of them. 

As I look back, I suspect that Mary Ann’s resentment of me for taking her from KC was more a function of the struggle with Parkinson’s than anything else.  The people in OKC were as warm and loving and accepting as anyone could have hoped for.  Through my ministry, I developed some of the most meaningful relationships I have ever had and still cherish them.  Busyness while doing full time ministry here did not allow for much contact, but the feelings remain.  Mary Ann and I did spend some time together with other couples in the OKC congregation whose friendship we valued very much.  We remember them fondly even though circumstances have not allowed interactions since then. 

It continues to seem that since retiring, past relationships, those that have a long history are coming into focus to a greater extent than while I was busy with the day to day challenges of ministry.   I suppose it is mostly the obvious, that there is more time to think about the past.  I am sure it is also a way of filling the validation gap created by having days empty of the multiple tasks with potential for external affirmation, measureable successes and failures.  It is a time to process the impact of relationships, as well as look through the layers of meaning to be found in past experiences. 

It is clear that Mary Ann’s assessment of the journey and my assessment are much different.  Mary Ann has the Parkinson’s, I see it and live in close proximity to it.  She more than I, but we are both impacted by the consequences of the Disease.  However our experiences of it differ, we are living through it together, one day at a time.   

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.