First hugs from the Grandchildren answer that question.  It just isn’t easy!  Of the many things that are more difficult when traveling as a Caregiver, one of the most frustrating is the sole responsibility for packing. 

I remember hearing from single parents and those who have lost their spouse in death one of the most difficult challenges is making all the decisions without access to consultation.  There is no one to ask, should I let the kids do this or not — should I do that repair on the house? 

When packing for a trip, each has a certain amount of responsibility for remembering what to bring along.  There are endless decisions to be made.  What clothes should we bring so that we can be fitting for weather and formality of events.  If we bring one color/style of shirt or top, there need to be shoes and socks and slacks to match. 

Decisions are tough to make at best when one has the beginning stages of dementia and the other isn’t exactly on his best game.  I asked Mary Ann what she wanted to take along.  She wanted what I call her fancy pants and top.  The most hated black shoes with short heels are a part of that outfit.  I hate them (not too strong a word) because they are treacherous for her to walk in and they refuse to stay on her feet — I am chasing them constantly.  Their favorite trick is to pop off midstream in getting on or off an elevator, going in or out of a door.  Maybe it was due to a subconscious aversion to them that resulted in my forgetting to put in the knee high nylons that she wears with them. 

I work very hard at creating and sustaining certain rituals associated with medication so that there are no missteps in having what is needed, and administering it on time each day.  There are, of course, multiple prescriptions, many including more than one dose a day.  There are four compartments in each day’s plastic pill holder.  The morning one has six pills, the next one has six pills spread through the day, the next compartment has three pills spread through the day, and the night time compartment holds four pills.  There is also a powder to mix with water or juice four of the seven mornings each week.

All of it was in order for the trip, along with all the meds needed to refill the compartments for the last half of the trip.  At least that is what I thought to be true.  Saturday, after returning for the night to the extended stay motel, I began filling the compartments.  To my horror, there was no pill jar of Midodrine there.  That is the powerful med that raises Mary Ann’s blood pressure to keep her from fainting.  To stop cold turkey the next morning would be dangerous.  When I have adjusted that med in the past, the doctor has insisted that the dosage be raised or lowered a small amount at a time over many days. 

What had happened?  I had broken ritual.  The caps of the medicine bottles are numbered (Mary Ann’s idea many years ago).  Refills not yet in use have no numbers on the top.  I transfer the old cap to the new bottle when the old one is empty.  I had not put a numbered cap on the new refill of Midodrine already in use.  I grabbed only the numbered cap bottles.   

As I sat there Saturday night, looking at the pills, my panic shifted quickly to planning.  I am grateful for the national database maintained by Walgreen’s Pharmacy.  I phoned the nearest 24 hour Walgreen’s here in Louisville, KY.  They accessed our account in Kansas.  While we normally use mail order meds, the recent change in dosage had required a short term prescription at Walgreen’s.  There was a current prescription that could be filled here to rescue us from our distress. 

After I phoned and was told the refill would be ready in 45 minutes (about 11pm), I resumed filling the bottles.  To my chagrin, the Thyroid med bottle only had two pills left in it.  I suspect you can imagine just how horrified I was at my own incompetence.  This morning I suggested to Mary Ann that she might want to trade me in on a more competent Caregiver. 

This med will demand a new prescription from the doctor, since we have only the mail order prescription open.  The request is now in the hands of the Pharmacist who has assured us that by tomorrow afternoon it should all be worked out.  Gratefully, the two pills will cover Mary Ann until then.

The other travel trouble is less appropriate for publication.  It is in the area of the Caregiver’s role in waste management [see earlier post].  There has been a difficulty in that area demanding my hands on involvement for three days now, with two or three sessions each day.  Those problems seem much more troubling when dealt with away from home.

Since there is a need for a handicapped friendly environment in which to stay, the costs of traveling have increased dramatically.  Staying with folks in their home, no matter how gracious and welcoming they are, is often simply not an option.  Lodging costs add up at a frightening pace.  A trip that we have in the past made in one day, now demands an overnight stay, adding still more to the costs. 

It is a little embarrassing just how long it takes us in the morning to get ready to leave the room so that we can start the day’s activities.  The usual multiple times up at night make early rising a less than satisfying option.  The result is that there is not so much time for doing things together each day, the object of the travel. 

While this is a litany of struggles that come with traveling, the hugs more than compensate –  the smiling, enthusiastic little faces drain away the frustration and replace it with joy and satisfaction. 

Is traveling worth the trouble?  Yup!

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First there was little sleeping, then there was a lot of sleeping.  Not only did she nap for over five and a half hours during the day yesterday, she went to bed earlier than usual, slept through the night, and was slow in getting up this morning.

The question in my mind this morning was, have we increased the Seroquel too much.  Will she now be sleepy all the time and move to a lower quality of life on account of it.  Is my decision to add another 25mg of Seroquel hurting Mary Ann?  When we saw the Neurologist last, he increased the dosage by 25mg and said that if the increase was not enough to deal with the hallucinationa and restlessness at night, I could raise the dosage another 25mg.  That is what I have done.

While I don’t yet know the answer to my question about whether or not the increase is too much, today she has stayed awake.  Tonight when I asked about it, she said she was tired all day.  Her tiredness could be the result of the Seroquel.

It is so very difficult to adjust the medicine to just the right amount, what the doctors call titrating the dosage.  The variables are many and complex.  Sometimes it takes a while for a change in dosage to have effect.  Different people don’t always react the same way.  Seroquel is a potent drug.  There are risks, serious risks.  Probably the most serious problem that can emerge is Neuroleptic Malignant Syndrome [NMS].  If I understand correctly, that problem very quickly can cause death.  It is an uncommon side effect of the drug, but nonetheless a risk.  Again, if I understand correctly (disclaimer: I am not a doctor), stopping Seroquel suddenly can also trigger serious problems.

Starting new meds, stopping meds, changing the dosage is like running through a grove of thornapple trees.  Someone might get hurt.  Mary Ann is always involved in the decision-making on the meds, but generally, she trusts my judgment on what she should take and when.  She is pill averse, so she takes as few as possible.  She will on occasion simply refuse to add more.  Most of the time she accepts what the Neurologist prescibes, and what I recommend.  That is not a responsibility that I relish, but, like it or not, it comes with the territory.

Caregivers often have a great deal of responsibility for how their Loved One does.  We are the ones who have a daily awareness of how things are going. Good doctors listen to us and take into consideration what we think is needed.  Again, that is a lot of responsibility to have.

I asked for help with Mary Ann’s (and my) sleepless nights and the disturbing hallucinations.  I asked.  The answer was to increase the Seroquel. I may have gotten more than I asked for.  This morning I was very concerned, actually, I was scared.  At the moment, since she was awake all day, I my concern has been mitigated a bit.  We will see how tonight goes.  The information on Seroquel suggests that the drowsiness that comes when it is first taken often diminishes.

What we both long for is for Mary Ann to be awake during the day, and asleep at night.  Is that too much to ask?  Probably, but we can hope.

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Maybe that is a little dramatic — three exclamation points — but we do now have a number of new items of food in the freezer.  While our Daughter, Lisa, stayed with Mary Ann for the three days I retreated to Oklahoma, she made lots of things that are within my cooking comfort zone and put them in the freezer.  She wrote the preparation directions on pieces of paper and put them with each item.  Gratefully, they are mostly the kind of directions that say, thaw, cook in oven for an hour at 350 degrees.  I can handle that!

Pete and Carla stopped by with a meal this noon.  They are very thoughtful folks.  I was sorry to miss seeing them since I was at the lake while Volunteer Jan spent time with Mary Ann. Jan and Mary Ann seem to enjoy each other’s company.  This afternoon Elaine came by, picked up Mary Ann and took her to the Quilt Show.  Mary Ann loved making quilts for a number of years.  She especially liked piecing the tops together.  She spent two years hand stitching the quilting on her first quilt, a queen sized sampler quilt.  After that, she took them to be machine quilted once she got the tops pieced. It has been hard for Mary Ann to accept the loss of the ability to make quilts.  After such a busy day, Mary Ann crashed late this afternoon, so the evening service at church was not an option for us.

This morning’s time at the lake provided a couple of interesting treats in observing wildlife.  The first is a repeat of an encounter I had a few weeks ago.  Again today there were two Ospreys sailing overhead.  One came right over the car, so I got a very good look at him through the binoculars.

I made my usual visit to the Delaware Marsh, which now has very little visible water in it.  The area that I walk has one large puddle left.  As I approached it from a distance, walking a on tall ridge alongside the marsh, the water in the puddle seemed to be almost boiling with activity.  When I focused the binoculars on the mud sided puddle, it was boiling, not from heat but from the movement of snakes, maybe a dozen of them. They were twisting and turning rapidly, in constant motion.

After watching a while, it became apparent what was going on.  The water had dried up in most of the area, leaving that large puddle as the last, very confined, place where the frogs and fish were trapped.  While I am not absolutely sure about the fish, I could see the frogs jumping out of the water, flying into the air, with snakes in speedy pursuit.

Some of the snakes were pretty large, at least two or three feet long — some probably longer.  The snakes began slithering off in the mud and marsh grass as I approached.  One large snake and one medium sized snake remained in the mud at the edge of the water even though I was not far away.  As far as I can tell, looking online, they were white bellied or yellow bellied water snakes.  They did not have the telltale triangular head of a venomous snake.  While I am not particularly fearful of snakes, I kept my distance.  The binoculars provided as good a look as I would get even if I tried moving closer.  I am sure they would have moved away quickly if I had climbed down the ridge into the marsh.  My visit to that puddle probably provided a stay of execution for some frogs and fish.  I doubt that the stay will be for long.

Uh-oh.  There seem to be signs of restlessness being revealed by the video monitor.  I hope Mary Ann sleeps well tonight since tomorrow includes two different Sonograms, heart and carotid artery.  We always hope for no change in the condition of both.  Blocked heart arteries, some weakened heart muscle and a dented and rough surface on a large lesion on one side of her carotid artery keep us aware of the harsh realities of her condition.

Each day is a gift!

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Logic sometimes seems to be completely useless in trying to figure out what to do.  In my last post, I was pleased with myself for keeping Mary Ann moving during the day to assure that she would sleep well.  In that post I reported that the hallucinations had diminished and she seemed to be down for the night.  So much for that observation.

After I finished that post, she started moving around.  The animals were back.  She was restless and we battled the animals for a couple of hours.  The next day was not much better.  There was a Volunteer in the morning who read to her.  I needed that break.  I headed up to the lake, listened to music and checked for wildlife.  As soon as I got back the usual issues that emerge when neither of us have gotten enough rest kept us at odds for much of the day.  Last night included some restlessness, but we both got a decent amount of sleep.

Today has gone reasonably well.  It is the day exactly forty years ago that I was Ordained, the day I became a Pastor.  We got out to a late lunch and splurged a bit, at least as much as can be done at an Applebee’s.  Our town has far too many restaurants, but few that are elegant and expensive (almost none).

There was a Volunteer tonight with Mary Ann.  I used the time to head up to my favorite spot nearby to watch the sunset and the wildlife.  A momma turkey and five young’uns provided some entertainment.  A doe settled down for some cud chewing about 200 feet way.  She seemed to enjoy the organ and choral music on a John Leavitt CD as it drifted out of the open window of the van.  She got up and left when the CD was done.  She has good taste in music.

There has been some nostalgia, maybe a bit of melancholy today.  The contrast between my life now and my life a couple of years ago is pretty dramatic.  During the years of ministry, most of my time (at least 60-70 hours a week) was spent connecting with other people face to face or via email.  Even when I was at home with Mary Ann, most of the time I wasn’t responding to her needs, I was at the computer interacting with people.

Because of the nature of my profession, there was lots of opportunity for being a part of people’s lives with the goal of making some sort of difference for good.  Whether I accomplished that or not is another matter.  That determination lies in the judgment of others.  All of that ceased completely at the end of the day on June 30, 2008.

I am grateful to have lifted from my shoulders the load of responsibility that goes with the role of Senior Pastor of a fairly large and very active congregation with hundreds of people serving as Volunteers as well as a substantial (and very capable) paid Staff.  I felt responsible to at least try to consistently do good work.  It was hard work.  As is always the case, the hard work is what produced the most meaningful accomplishments.  Gratefully, the central commodity we deliver is forgiveness.  It is a good thing, since I certainly needed lots of it for the things I did not get done or did not do well.

Today, it settled in me a little more deeply that that part of my life is over.  I found myself wanting to connect a bit with folks I have served over the years.  While my ministry has not been about me, but the One I follow, I would be lying if I claimed utter selflessness.

Today, I also recalled the most magnificent celebration I could have imagined when the congregation gathered for a retirement party a few weeks over a year ago.  What a party!  There was a sea of almost 500 people spread out in that room.  There was great food, great coffee, great ice cream, spectacular decorations, thoughtful gifts, and kind words that were way beyond anything I deserved (that’s not humility but honesty).  I will never forget that day.  No matter how bittersweet the day was today, I do not feel underappreciated.

Mary Ann is now in bed and on the monitor appears to be settled.  I will not predict how the night will go.  There was no napping today.  Logic would suggest that she would sleep.  Logic is irrelevant.  It will be what it will be. Actually, she has just had a trip to the commode and is now (seeing her on the monitor) moving about as if she is seeing things.

Tomorrow is a routine (three times a year) trip to the University of Kansas Department of Neurology’s Parkinson’s Center (Movement Disorders).  Hopefully Dr. Pahwa will have a suggestion for improving Mary Ann’ ability to rest at night with fewer troublesome hallucinations.

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Tonight we met a couple who have just received the diagnosis, Parkinson’s.  It was their first time at the Parkinson’s Disease Support Group.  I will speak only in general terms since I did not ask for permission to discuss their situation here.  As I listened to what they have been going through in incorporating the diagnosis into their lives, I couldn’t help but remember twenty-two years ago, when Mary Ann and I were in our early to mid-forties and the diagnosis came.

The couple tonight had been spending much time and energy trying to look forward, trying to determine what to do to prepare for what is to come.  There is so much information available now. I don’t know what the status of the Internet was twenty-two years ago, but, since we didn’t have a computer, its status is irrelevant to what we experienced then.

Information was hard to come by.  What was pretty unnerving was that the first Neurologists we saw didn’t seem to have much information either.  It isn’t that the disease had not been identified long before 1987.  The Neurologists we went to at first were not specialists in Parkinson’s.  Their staffs knew only the basics.  Since every presentation of Parkinson’s is different in each person, the basics seemed more harmful than helpful since they didn’t always fit Mary Ann’s experience of the disease.

During those early years, we did make occasional trips to Kansas City from Oklahoma City either to attend a Parkinson’s Symposium, or visit the Kansas University Medical Center’s Parkinson’s Clinic.  There we discovered a Neurologist and Staff who actually knew about Parkinson’s.  What was so frustrating to us as we went to the Neurologists in OKC was the discovery that we had come to know  more about Parkinson’s than the Neurologists and their staffs there.

Even at that, the knowledge of Parkinson’s in 1987 pales in comparison to what is known about it now, especially the non-motor symptoms.  I have talked about this before in other posts on this blog.  The question that has come to mind tonight is, what would we have done differently, how would our experience these twenty-two years have been different had we known then what we know now?

We talked tonight about the challenges that lie ahead for this couple.  They have worked very hard at anticipating and preparing.  They have searched the Internet and found lots of information, information that was not available when Mary Ann was diagnosed.  They have one of the best Neurologist’s around, one who specializes in Parkinson’s Disease.  Their situation is much more challenging than ours since both of them are dealing with physical problems.  The current Caregiver (now diagnosed with Parkinson’s) is likely to be needing care as time goes by. The one who has been receiving care is likely to need to become not only more independent but able to help the current Caregiver.

With the diagnosis only months old, it is hard for them to imagine how they will deal with what is to come.  When Mary Ann was diagnosed, we had no idea what we were getting into.  We did not have but a tiny fraction of the information these folks have.  The question wandering around in my head is what would we have done differently had we known what they already know, had we known what we now know.

The answer that first pops into my mind is, nothing, we would have done nothing differently had we known then what we know now.  Even with all the knowledge we have gathered over twenty-two years of listening and reading and learning, we still don’t know what lies ahead!

As we have lived out each day for all these years, we have used common sense based on the information available.  We found our way to a good doctor.  We paid attention and tuned in to the treatments and medications and reasons for them.  We went to the symposia and continued to read and learn.  When we moved we got a home that was fairly handicapped friendly and then increased that accessibility as soon as we could afford to do so.  At each step along the way, we made choices that accepted the most likely progression of the disease, choices that seemed to make sense.

We could not and cannot know what lies ahead.  We can simply create an environment friendly to our situation and trust that we will make good decisions as the days and weeks unfold.  We can only do what we have the knowledge and resources necessary to do them.  That is more than enough to do.  Yes, it means thinking about financial issues so that things are in place to the degree possible.  It means developing contingency plans within reason.  We cannot cover every potentiality.  We simply can’t.  We have had to accept that.  No one can know what lies ahead, nor is it possible to have every base covered.

The good news is that by acting responsibly, doing the best we can with the information and resources available to us as each day goes by, we have the best chance of dealing with whatever contingency may come.  There are no guarantees in life.  I am hardly the first one to come to that conclusion.  It is a truism.  By giving up the illusion that we can anticipate and prepare for every problem the diagnosis will produce in the future, we are free to live the day we are in with some peace and enough energy to deal with whatever that day brings.

The couple tonight had come to that conclusion after working very hard at assessing what the future will bring and preparing for it now. They will clearly make the best of a very difficult situation.

What lies ahead?  We have some clues, but only clues.  We won’t know what actually lies ahead until it happens.  Doing the best today with what we know, dealing responsibly now with what is actually happening, doing what we can today to position ourselves for what seems likely to come is not only a productive way to live, but it gives us the best chance of being able to deal with whatever it is that does lie ahead.

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

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

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

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

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

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

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

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

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

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

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

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

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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.

Would you believe, he told us at our Parkinson’s Support Group meeting to take our daily antioxidants and low dose aspirin.  He is Mark L. Weiss, Ph.D. whose life is centered on doing research on the potential of what is called Wharton’s Jelly.  Wharton’s Jelly is found in umbilical cords, a non-controversial source of stem cells.  Let me add immediately that Dr. Mark pointed out that he is not a medical doctor but a Ph.D. Any choices we make concerning medicine, even over the counter medicines should be checked out with our medical doctor.  He did say that it seemed pretty safe to suggest doing what every doctor and most everyone else also suggests, that we take antioxidants and low dose aspirin.

His encouragement to do so comes with the answer to the question, why?  Parkinson’s disease is caused by the death of the neuron cells in the brain that produce dopamine.  What kills those cells is an oxidant as in “anti”oxidant.  What first popped into my mind when I heard that was, broccoli wins again.  Eat those antioxidants.

The process that sends those killer oxidants on the attack is inflammation. Oddly, one of the hints that inflammation can play into the process that produces Parkinson’s Disease came after the flu epidemic of 1918.  There was an increase in Parkinson’s Disease after that epidemic.  Non-steroidal anti-inflammatories such as aspirin reduce inflammation. That is why the Cardiologists suggest taking them — to reduce the inflammation in the heart.

What was exciting about Dr. Mark’s presentation at the Parkinson’s Support Group meeting tonight was that certain umbilical cord cells (UCMS) found in Wharton’s Jelly can produce a form of stem cells having properties that hinder inflammation, interfering in the cycle that produces the death of the Neurons that supply the brain with dopamine.  In addition, there is a bonus that results in the rescue of the neurons that are dying.  If that is not enough, there is evidence that those particular stem cells can be transplanted without triggering rejection.

Please understand that what I have just written is what was heard by a retired pastor who has no formal medical training other than making thousands of hospital calls, listening to multiple doctors who deal with Mary Ann’s many medical problems, and going to many a Parkinson’s Symposium.  I could easily have completely misunderstood.  I will email my blog address to him and invite Dr. Weiss to comment and correct, although I am sure he has much better things to do.  All who read this post need to understand it is just my take on what I heard.

What I left wtih tonight was not so much an expectation that there will be anything that comes of this research that will change Mary Ann’s situation.  It was more an excitement that there are possibilities for slowing down the progression of the disease in those diagnosed with Parkinson’s.  Even hope that may not change our situation is hope.

Tonight I gained a level of understanding of this disease that I have never experienced before.  I credit the knowledge and communication skills of Dr. Mark.  I can’t speak for the rest of the group, but judging from the questions, it appeared that most of us gathered in that room now understand the disease process of Parkinson’s as well as some Neurologists.

Gathering with a room full of people who understand what it is like to live with Parkinson’s Disease is comforting.  We talk the same language.  We can talk about things that would either bore others or cause them to feel uncomfortable.  For some reason I feel empowered just by knowing more about the disease process.  It demystifies it.  Knowledge is power.  That Dr. Mark and others in the research community know as much as they do, increases the likelihood that a number of approaches to treating Parkinson’s will emerge in the years to come.

Tonight’s Speaker: Mark L Weiss, Ph.D. Professor of Neuroscience at Kansas State University; Associate Director of the Terry C. Johnson Center for Basic Cancer Research; Founder of the Midwest Institute for Stem Cell Biology; Anatomy and Physiology, College of Veterinary Medicine.

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Today is the first day this spring we have been able to meet on the deck.  There is a dramatic change in the feel of the experience when on the deck rather than in the downstairs family room.  At 7:30am the birds are fully engaged in noisy and boisterous activity.  In that setting we have been buzzed by hummingbirds heading for the feeder.  A Cooper’s Hawk has come crashing through concentrating on its prey, oblivious to coming within inches a ducking head.  Rabbits have come by the deck with little fear of being so close to people.  Hungry birds have ventured to a feeder no more than a couple of feet from the head of one of us.   

The smells and the sounds, the sun and clouds and trees and gently blowing breezes calm the spirits of our little group as we begin with a few moments of silent meditation.  Our silence has as part of its nature the sounds of nature, as well as car sounds, mowers, dogs, airplanes, whatever else that happens to be going on during those moments.  The sounds of nature seem to dominate. 

We refer to our group as a Spiritual Formation Group.  The Group began many years ago.  I am not sure how many at this point — maybe seven or eight years.   The size has ranged from four to six members.  There are just a couple of us who have been there from the very beginning.  There are five of us at the moment.  It meets at our home since I need to be on call for Mary Ann’s needs.  The group emerged at a time in the life of the Congregation when there was a special emphasis on starting small groups. 

Our goal is to incorporate what we believe into what we do moment by moment each day — the ordinary.  We seek to support one another in disciplines that increase the likelihood of our finding the strength to live meaningfully no matter what comes or how fast it comes. 

It is no small order.  This morning in the course of our conversation, I had a chance to do some more processing of yesterday’s emergency trip to the Dermatologist to re-sew stitches that had been torn out of Mary Ann’s shoulder by a fall, stitches intended to close the gaping hole left by the removal of a skin Cancer.  I should add quickly that after a restless night, a painful morning this morning, she slept four or five hours.   She is doing well at the moment, down for the night (hopefully). 

Our group has a covenant that includes confidentiality.  Any specifics will reflect only my thoughts and comments.  The rest will come in general terms. 

Caregivers need a support system!  We cannot do this by ourselves.  Some of the support comes in the form of help with tasks, companion care for Mary Ann, food, all sorts of tangibles.  The support that is to be found in a Spiritual Formation Group is the nurturing of the spirit, the center of being from which deep personal strength comes.  From that deep well of strength is drawn the power to endure, even thrive, in the face of adversity. 

My approach to talking about Spiritual Formation is intended to reflect two elements of my intentions for this Blog.  One intention is to reflect my own spirituality, since that is how I manage as a full time Caregiver.  I am a retired Lutheran Pastor.  I have a deep faith rooted in a very specific understanding of Who God is and what God has done.  My relationship with God is created and sustained by a fellow name Jesus Christ.  I make no apology for that faith. 

At the same time, this Blog is not a parochial piece intended exclusively for folks who happen to share my faith.   The most basic element of my faith is the unconditional love reflected in the Christian Story (a true story).  That love has no bounds.  I am very comfortable framing the truth in humanistic terms, scientific terms, philosophical terms.  I feel no need to defend my faith or force feed it to others — witness to it, yes.  It is a part of who I am and how I cope. 

I will seek to do so and enjoy framing the deep well of strength in a way that is accessible to people who have another spirituality or no spirituality at all in their view of reality. 

In our group, we always use a book of some sort intended for use in a spiritual formation small group setting.  We are currently using book in a series of Spiritual Formation Guides produced by Renovare (http://www.renovare.org).   The chapter we were doing today is titled “Being the Good News.”  Our conversation revolved around the question, “…how do you seek to act as the good news in the world?” 

This morning my need as a Caregiver was to process with others what had happened yesterday, the fall, the broken stitches, the dripping blood thinned by Plavix, the emergency trip to the doctor to be resewn.  I needed to process it so that I could face the harsh reality that had I been beside her I might have prevented it, that I had not been calm and cool and collected, sweet and nurturing throughout the experience.  I needed to affirm what I had done that was appropriate to keep Mary Ann safe, to get her the help she needed, to care for her during and after the trauma.

The conversation in that small group, the processing, helped me to reframe the experience in a way that allows me to accept my failings, celebrate the good, and see the possibility for change. 

For those who don’t have a spiritual dimension as part of their worldview, having a small group option for processing experiences is equally important.  The goal is to reframe what has happened in a way that gives it meaning.  Seeking to become more fully human is not only a help to your Loved One but a help in your own survival.  Each event is an opportunity for growth.  That growth can lead you to a better quality of life as you become more able to get past the reactive primitive brain impulses to thoughts and actions that are both sensible, humane and life affirming. 

Caregivers need a healthy, well-balanced support system.  A small group, in my situation, a Spiritual Formation Group, can help provide the deep source of strength needed to endure whatever life throws our way. 

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

One of my fears about falling was realized this afternoon.  We live in a very narrow margin of functionality.  We slipped outside the margin for a time today.  The result is an apparent need to change a pattern that has been allowing both Mary Ann and me moments of freedom from being tethered to each other. 

Yesterday morning was the procedure to remove another in a series of Basal Cell Cancers that have been appearing on Mary Ann’s back and upper chest.  The procedure was done in the Dermatologist’s office.  We like him.  He seems to be very committed to the field and always upgrading his knowledge and skills. 

His office, however, is right from the 1950’s.  It is very small, a narrow hallway leading to tiny rooms with pocket doors, bathrooms barely able to hold one person standing up, let alone somone in a wheel chair.  There is a nice flat screen television in the waiting room, among the old furniture.  The equipment doesn’t always work, but it is adequate, and procedures are done well.

The spot on the back of her shoulder was not large.  To guarantee that the perimeter of the patch of skin removed was clear of Cancer cells, a pretty large area of flesh was removed.  Each time a procedure has been done, I have watched each step.  The rooms are very small, so I always have an unobstructed view. 

It is always a surprise to me to see the size of the string of stitches when the the wound has been sutured.  In this case, it was at least a couple of inches long.  He sutures the lower edge of the epithelium, deep in the hole left after the circle of skin is removed.  That is a very tedious process, including a number of steps with each of the many stitches.  Then comes the suturing of the surface edges.  The round opening is pulled together into a line, not exactly straight, but close.  Again each stitch takes multiple steps. 

He made a point of closing the wound tightly since Mary Ann takes Plavix and aspirin.  The doctor observed that Plavix actually sometimes gives surgeons more trouble that Coumadin, a much more powerful blood thinner.  He wanted to be sure there would be no problem with bleeding. 

The day went well after the surgery.  Even though we had been given suggestions for dealing with pain, Mary Ann reported no pain.  The doctor called last evening to ask how she was doing.   There were no problems. 

Today was a good day in many ways.  Mary Ann went to her weekly small group meeting at church.  I was basking in the possibility of a water problem in our back yard turning into a beautiful garden and water feature.  Most importantly, some gossip came my way — good gossip.  The sadly empty building that used to be our Baskin-Robbins ice cream place — yes, I said ours, by squatter’s rights — may eventually open again. 

After lunch, I actually managed to do some cooking using a very complicated recipe.  Here it is:  Brown one large package of country style boneless pork ribs in a large frying pan, then transfer them to a crock pot, add a bottle of KC Masterpiece barbecue sauce and cook them forever.  The recipe is came to us from Larry and Jolene, when they brought over a huge and sumptuous meal.  My creative addition to the recipe is to open a couple of cans of beans and add them to the crockpot a half hour or so before eating.  Enough of the culinary diversion.

Mary Ann wanted a snack.  We had some ice cream.  She ate part of it and decided there was something in it.  I find those hallucinations to be especially annoying, since once they appear, the only alternative is to throw away perfectly good food for no good reason.   An hour later, Mary Ann popped up out of her chair, and as I suspected had decided she needed another snack.  I couldn’t pass up an comment on the last snack’s fate, and then I headed for the kitchen to see what I could find for her. 

I left her standing beside the transfer chair.  As soon as I got to the kitchen, I heard the familiar thump of her falling.  It was in an open carpeted area.  She hit nothing that might hurt her.  Normally, such a fall is just routine.  Not this time.  She landed directly on the shoulder that had been stitched up yesterday morning after the surgery on the skin Cancer. 

I knew it would be so, and as soon as I got her to the bedroom to look at it, my fear was confirmed.  The blood was running.  I headed for the case we have filled with first aid supplies we have gathered after past experiences like this.  I got a thick surgical pad and some tape to try to contain the bleeding until we could get back to the doctor.  The tape I had  (too narrow) combined with the awkward location of the incision resulted in blood seeping through to her clothing in spite of my best efforts. 

 I called the doctor’s office and was advised to do the obvious, bring her in.  The doctor had to send home a patient who had been stuck and prepped for a procedure because Mary Ann’s wound could not wait.  She had done something he had never seen before in his career (started medical school forty years ago).  She had torn open the two inch stream of stitches on the top and deep within the wound.   He had to start over completely.

The afternoon grew in complexity as it went on.  The doctor had sent home the other patient prepped for a procedure.  As he and two assistants were doing a cluster of preparatory tasks for Mary Ann’s repair, the doctor’s preschool-aged grandson came running down the hall.  He poked his head in.  He was not put off at all by what he saw.  Obviously he had wandered in on procedures before.  What added to a sort of chaotic tone that was developing was that the little boy’s mother. the doctor’s daughter-in-law came down the hall holding a cloth to her forehead.  She had run into a door and was also in need of stitches. 

The doctor left Mary Ann to attend to his daughter-in-law.   The assistants continued the prep, obviously a little unsure of how to proceed.  During that time the two assistants were sharing with each other their concern that they both had to leave and could not stay much longer.  One  had an appointment to take her two year old horse to be broken.  The other had to pick up her preschooler (who happened to be attending the preschool at the church from which I retired last summer). 

The doctor had done some preliminary work on his daughter-in-law so that she could wait until he was done with Mary Ann for her stitches.  When he returned, the imminent departure of his two assistants became clear.  The word went out to the office manager who had been with him for much of his practice to scrub up so that she could take over when the assistant’s left. 

Through all this, every time we checked with Mary Ann, she said she was fine.  She lay a long time on that table as he redid the entire suturing process.  It was long and tedious.  As time went by we all began to appreciate the craziness of how the afternoon was going.  They all commented on how uneventful the day had been up until we injected some drama into their day.  I told them that if it was okay with them, we would opt out of any future need for excitement being added to their day. 

The moment, Mary Ann is in bed.  As a her Caregiver, I have a dilemma.  First of all, I bear responsibility for what happened.  Had I been there with my hand on her gait belt, I could have prevented the fall.  Secondly, I was not calm and reassuring after it happened.  Instead, my frustration with the situation spewed out of my mouth.  Gratefully, I moved quickly and got done what needed to be done.  My dilemma is the implication this has for how I go about my Caregiving task. 

I have felt free to be in the kitchen for a time, go down the hall to my office to be at the computer for short times during the day,  go to the end of the block to get the mail.   At least until the stitches heal fully, this episode suggests that freedom no longer to be an option.  Mary Ann simply cannot keep from getting up and going.  I need to be there immediately to offer an elbow or put my hand on the gait belt. 

Tomorrow, I need to follow through on getting an audio-visual monitor from Babies R Us, or wherever I can find one.  If I can keep the receiver with me wherever I am in the house, maybe Mary Ann and I will not need to be joined at the hip every minute of every day.  That much closeness would all but assure both of us going completely crazy.   It would not be a pretty sight.

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.