I think spending the day last Saturday while Mary Ann was sleeping, moving into and through the feelings about where we seem to be headed allowed me to listen better and and come to terms with where Mary Ann is now in the disease process.

In the phone call about the fax I sent last week, Dr. Pahwa’s assistant relayed the option that Mary Ann see a Psychiatrist to look over the medicine regimen to see if there are some better options for her.

When we talked with Dr. Pahwa today, it was apparent that the Psychiatrist option made sense if I was still uncomfortable with the Seroquel.  We would need to use a local Psychiatrist where we live (an hour from KU Med) since one of the main alternative meds demands monthly blood tests to monitor it.  I have read enough to know, and Dr. Pahwa confirmed, for the sort of dementia Mary Ann has, Seroquel is by far the better choice.  The alternative also is likely to make the fainting worse.

Here is the heart of the matter.  There is no one around this area who knows the unique characteristics of Parkinson’s as well as Dr. Pahwa.  I suppose it sounds arrogant to say so, but I would have to explain the uniqueness of Mary Ann’s complex version of Parkinson’s and the character of this dementia to someone who is a generalist and does not focus all their attention on Parkinson’s.

I know of nowhere to get better information on what to do and when in dealing with the complexities of Mary Ann’s expression of Parkinson’s.  Every time in the last 23 years we have gone to anyone other than the Dr. Pahwa and Dr. Koller before him, Mary Ann has done poorly.  She has been where she is now in some ways at least twice before, once 14 years ago and once about 8 years ago.  The first time it was Dr. Koller and the second time it was Dr. Pahwa who brought her back to a high level of functionality each time within weeks of seeing them.

While he was sensitive in how he approached it, and actually simply responded with a look that said more than enough when I said it, Mary Ann is doing as well as we can hope given how long she has been battling the Parkinson’s.  Changing meds in some elusive search for the perfect combination restoring her magically to a former place in the journey would be a very risky exercise in futility.  What might be gained is not worth the risk of what could be lost.  Those are my words, but he agreed immediately.

If we lower the Seroquel, we opt for less sleep time and more hallucinations.  Selfishly, I don’t think I could handle that result.  The two days and nights she sleeps, allows me to sleep.  The times there are streaming hallucinations already push me right to the outer edge of my capacity to cope.

It is time to accept that we are where we need to be.  This is our new normal.

We talked some more about enrolling in Hospice.  We will have a family talk this Saturday when the kids and I are together.  If Mary Ann is awake and alert, we will certainly include her in that conversation.  If she is not, I will talk frankly with her about it.  I have already begun doing so.  I talked openly with Dr. Pahwa, as we were together with Mary Ann in the Examination Room.  I talked about the DNR (Do Not Resuscitate) order that would be expected for the full Hospice program.

I will try to get someone from Hospice to come over to the house before I leave Thursday morning for three days of solitude at the Spiritual Renewal Center in Oklahoma.  I will also try to get any input the Cardiologist might be willing to give that could help inform the decision.

I mentioned in last night’s post that Mary Ann was beginning to hallucinate.  She also fainted two or three times during that first commode trip of the night.  She did not sleep soundly through the night.  There were a number of trips to the commode.  As happens when we transition from sleep days to hallucination days, she was up more than once an hour in the last half of the night.  I finally fed her a single serving container of applesauce and took her out in front of the television with the promise that she would not get up.  Then I got a few minutes more sleep, until the alarm went off, got showered and dressed.  By that time, she had, of course, gotten up and was on the floor outside the bedroom door.  She did get a scrape on her leg, from what I am not sure — there was nothing obvious that she might have hit.

She took her pills and ate breakfast in time for Bath Aide Zandra to get her showered, hair washed and dressed in time to leave for the Neurologist appointment in Kansas City.

She had pretty much shut down and moved into her head on her lap mode as we moved from the bedroom to the door to the garage.  I have never had a more difficult time physically, getting her out of the chair, to the steps, down the steps, to the car, and into the passenger seat.  I almost had to carry her.

We made it into the car.  She had her head down the entire trip to KC.  Getting her out of the car and transferred directly to her wheelchair went much better there — probably because there was no walking, nor were there any steps.  In the past, steps have been her best thing.  That is one of the  unusual characteristics of Parkinson’s.  The line of the step make it easier to get her feet to move than on a flat plane.

In the doctor’s office, she was in leaning forward mode, although not all the way to head in lap position.  She was minimally responsive during most of the time with the doctor.

We agreed to fill out an assessment that will be used in a study on the impact of non-motor symptoms of Parkinson’s — all the problems other than the ability to move arms and legs, and keep balance.  The survey took a very long time.  Mary Ann was really struggling to respond.  I am not sure how helpful we were to the study.  One interesting quirk was that while she managed to say the months of the year backwards, December, November, etc., she could not track with another request.  She was asked to count backwards from 100 by sevens.  I was glad I wasn’t asked to do that.  Kelly, who was administering that part of the survey, explained it and repeated the instructions a number of times.  Mary Ann’s first response was to just count backwards from ten to one.  Kelly repeated that it was counting from one hundred, subtracting seven each time.  She then said what is seven subtracted from one hundred.  Mary Ann answered, three.  She never connected that Kelly said 100, no matter how many times she explained it. Mary Ann always responded with ten.

Admittedly, it was hard to watch as she was asked to write a sentence of any sort, and she made some tiny scribbles and was not able, of course, to read it or say what she wrote.  She was to draw a simple shape matching one on the paper in front of her.  She made a couple of attempts, but to no avail.  Mary Ann was always very good at drawing.  She illustrated a children’s book she wrote many years ago.  She never tried to get it published, but it is very cute.

I know she hates how much she has lost over the years.  It has become just a fact of life now.  It is part of our current normal.

When we got home Mary Ann ate some thick and hearty steak soup with my help, finally falling asleep in her lemon meringue pie. She was refusing to let me help her at that point.  She napped in bed for a couple of hours, got up, ate the pie (this time letting me help), and soon headed back to bed.  Of course, I cannot be sure how tonight will go, but we are on the increasing hallucination time if her current cycle of symptom changes continues.

Today was a day in which the facts of our situation seemed quite clear. Having worked through the strong feelings about the matter last Saturday, and a Sunday morning a month ago, seemed to make it easier to be rational about the information available to us today about where Mary Ann is in this journey with Parkinson’s tagging along.  Dr. Pahwa reminded us how long our battle with Parkinson’s has been going on — twenty-three years now

It is time to accept where we are in the journey.  We don’t have to like it.

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In forty years of calling on the sick, I can’t tell you how many times I heard from people who had gone through a surgery after they had recuperated, “I didn’t know how bad I felt before I had the surgery until now, now that I feel good again.”  I don’t think I realized just how heavy the weight was that I felt, thinking Mary Ann was declining at a faster and faster pace.

I can’t know how long the feeling will last since this is such a roller coaster ride we are on, but for the moment, it feels as if a deep and heavy sadness has been lifted.   Like a little child, I tend to act out when I am struggling with something.  I act out by getting grumpy.  I make no promises to anyone that I will now be nicer for a while, but there is a profound sense of relief.

Our Cardiologist, Dr. M, was a parishioner for the last dozen years of my ministry.  We have come to appreciate him very much.  He combines a lot of traits that a patient looks for in his/her doctor.  He takes the time to listen well.  Not only that, but he takes what the Patient and Caregiver have said into account when making decisions.  He is decisive in a way that respects those whose lives are impacted by those decisions.

He has made clear that he is not in the business of predicting the future and cannot answer the “how long” questions.  What he will do is disclose what he knows, analyze it and make a logical assessment of the situation.  While I am always looking for something that help clarify where we are on our journey, there simply are not definitive answers to my questions.

Today, I took an approach that allowed Dr. M to analyze the data with me and compare where we are to where we were eight months ago (the last round of tests).  He also looked back farther so that we could get a sense of the trajectory we are on, at least in terms of Mary Ann’s heart and kidneys.  The Neurologist is the one to ask about the Parkinson’s and Parkinson’s Disease Dementia.  The heart issues in particular provide the most concern in terms of longevity.

Dr M’s look at some key indicators seemed to reveal, that while Mary Ann’s heart and kidney health has declined, in most ways she has been moving back and forth along a pretty level trajectory.  Her numbers have been worse at times in the past than they are now.  They also have been better than they are now.

The conclusion seems to be that Mary Ann is fairly stable, not on a trajectory that is taking her quickly toward free fall.  Mary Ann and I are fully aware that something precipitous could happen, but the truth is, that is so for all of us.  The Parkinson’s itself has been moving very slowly.  There are not likely to be dramatic changes in its progress.  The Parkinson’s Disease Dementia, is another matter.  It is very unpredictable.  It changes in fits and starts and can turn on a dime in a new direction or return to a better place thought never to be seen again.  Other than trying to control the Autonomic malfunctions to the degree we can, we have only the Exelon patch to help with cognitive issues.

As to her heart and kidneys, it is the high blood pressure that is the enemy.  Today Dr. M responded favorably to my suggestion that we consider the addition of  Mestinon to Mary Ann’s medication regimen.  That drug has the potential of helping control the fainting by raising her BP only when she stands up, the time it drops thereby precipitating a fainting episode.  It is an off-label use of the drug, but there are no major concerns that militate against trying it.  It does not conflict with anything she is currently using.

My intention is to cut in half the dosage of the Midodrine (okay with Dr. M) for a few days, then add the Mestinon. It is always wise to change only one med’s dosage at a time so that any problematic changes that might occur will be easier to trace to the source.  I will try to take her BP as often as possible and ask our Parish Nurse if she would stop by to check it also. The goal is to use as little Midodrine as possible since it raises BP all the time, not just when standing.  BP is highest when lying down, since it does not have to fight gravity.

The information received today through Dr. M’s analysis helps in a couple of ways.  Both Mary Ann and I perceived what he said in a positive way.  I feel a sense of relief that revealed just how down I had felt about her perceived decline.  We understand her to be pretty stable and on a fairly flat trajectory in the progression of the heart and kidney problems.  Another way that we are helped by having more clarity on where we are in this journey, is that we can use our ability to deal with the challenges more efficiently.  We can’t afford wasting our days fighting things we cannot change.   We can’t afford to waste our energy because we are in denial about the realities of our situation.  As I have said before, a certain amount of well-placed denial can be very helpful in living through our days as meaningfully as possible.  However, we need to know what to accept and what to fight.  We don’t want to accept something when we should be fighting it, nor do we want to fight something that it is time to accept.  Today helped us better discern what to fight and what to accept.

At least tonight, my assessment is that I had moved toward acceptance of a more rapid decline than is actually happening.  I feel more bold now about stretching the limits of what we are doing.  I will, of course, not be foolish about tackling things that put us at an unhealthy risk.  A certain amount of risk, however, is necessary to stay alive and well.  After so many years of practice, we have ways of dealing with most of the problems that arise when things do not go well.  If we try something and it goes badly, we will deal with it and try something else.

I guess it has been a good day!

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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.

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