I called this morning to find out how we should go about reducing the medication that seems to be making things worse.  Through his nurse, last week we were instructed to call back after a few days on the newly increased dosage of the Seroquel.  When she called back, she simply said that we needed to find a Psychiatrist to manage the dementia and the meds.  We have just been set adrift and are on our own.

This University of Kansas Neurologist specializing in Parkinson’s is the one on whom we have depended for about fifteen years now.  There are very few options where the kind of expertise needed to deal with Mary Ann’s complex version of Parkinson’s is available.  KU med center is one of the few places in the country.  None of the rest are close enough to do us any good.

I need to find out whether or not he is still willing to continue prescribing the medicines dealing with the motor issues associated with the Parkinson’s.  Then there are some meds that have impact on the dementia, but were prescribed by the Neurologist to deal with the Parkinson’s.  He also prescribed some of the meds that are intended exclusively to help with the dementia.  What happens when we need a refill?

When I asked during last week’s phone call if there were any Psychiatrist’s at the med center to whom we could be referred to manage the medication the nurse curtly told me that they were not taking new patients.

I have begun checking to find out if there is anyone here in this area who is competent in dealing with Lewy Body Dementia [LBD].  It is enough different from Alzheimer’s Dementia [AD], that it will not be adequate to simply be aware of the usual treatments for AD.  So far the responses seem confirm my impression that we are underserved in this area with good Psychiatric/Neurological care.

Whether rightly or wrongly, I have concluded that generally the medical community loses interest in folks in the later stages of life.  Hospice does a wonderful job of helping people during those years with end of life care.  They, however, are not in the business of treating the diseases that bring people to that point.

I will seek out the best care that I can locate here in this area and try to draw the best out of whomever she sees for care.  My goal remains to have the best quality of life possible for as long as possible in the face of a progressive disease process that we cannot stop.

I am apprehensive about how things will go now that we have discontinued the extra morning pill that seemed to make things worse.  It is a pretty powerful medicine.  Reducing it can have a negative impact.  Tonight Mary Ann seems unable to speak clearly — the words are slurred and pretty much unintelligible.  It is making the simplest communication very difficult.  It took a long time to determine that she wanted to sit up on the side of the bed and have some water.  When I gave her the water, she seemed unable to use the straw.  The years of experience giving people wine from a chalice during my active years as a Pastor came in handy as I helped her drink directly from the cup.

This morning Mary Ann got up very early again after a number of times up earlier in the night.  I actually can’t seem to remember how much sleep I got.  I did get to bed pretty early for me.  I think I got a little more between Mary Ann’s dreams.  She was again hallucinating constantly.  This morning she was actually pretty entertaining with some pretty silly comments.  She ate breakfast, then Bath Aide Zandra came.  She did not seem to do well and afterward was unclear that it was Zandra who had been here.

She napped a bit, rested with her head down some of the time.  Lunch was a little harder than usual to get accomplished.  Supper was tough since she just couldn’t hold her head and the upper part of her body up for me to feed her.  Holding her up and feeding her is really very difficult to do.  When we finished, she had eaten a fair amount of meatloaf, if little else.

Volunteer Tamara came this evening while I got to the grocery store.  It has been tough to get out lately even to do the basics.  Mary Ann is now in bed, but she seems to be having trouble settling.

I am dreading the task of finding competent medical care, developing a good working relationship with him/her, and adjusting to whatever changes in medications and treatments may be involved.  It is hard to walk into a new situation in which I bring 23years of intense study on this particular patient, but those with whom I am sharing come with the confidence that they are the experts whose decisions must be accepted as the final word after a few minutes of conversation.  We have been spoiled by having doctors who have listened well and communicated well.

I am looking for some good to come from this transition.  It often happens that paths we would not have chosen bring us to a better place than we might have gone otherwise.  I can hope.

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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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Mary Ann and I both had appointments with the Cardiologist today.  We knew him as a parishioner before he became our Cardiologist.  We like him very much.  He is good.  Very good.  We are grateful that he is good since Mary Ann has so many problems associated with her heart and its functioning.  He is an important member of the team.  It is a team.  The team includes the Cardiologist, the Parkinson’s Clinic Neurologist, the local General Neurologist, the Gastroenterologist, the Primary Care Physician (General Practitioner),  the Nephrologist, the Ear, Nose and Throat specialist, the Dermatologist (who has removed her four Basal Cell skin Cancers), the Endocrinologist, her Physical Therapist, Speech Therapist, Occupational Therapist, Clinical Psychologist, two or three hospitalists, along with numerous medical technicians and nurses of all sorts, some seen only once, some who are practically like family.  We have great medical care.

Each of these people is very good at what he/she does.  Each has specialized in a certain body system or body part.   The Primary Care Physician has the largest chart for Mary Ann, but there is no way he can keep up with all the tests and treatments and medications with so many different people making independent decisions about what to do to treat the problem in their area of expertise.

Here is the obvious problem in this marvelous Team effort.  Mary Ann is actually a single living being who is not simply a gathering of independent systems and body parts.  She is a whole somebody.   Every system is connected to every other system, making up a single functioning human someone. 

Any of you who has been a primary Caregiver for a Loved One with Parkinson’s or any other chronic illness understands very well nature of the your role as a Volunteer Medical professional.  All those people listed above know more than I do about their area of specialty.  I know Mary Ann better than any of them.  I pick her up when she faints or loses her balance.  I know when those problems come in relationship to how much medicine she has taken and when.  I have discovered that when the recommended treatment for her heart is put in place, her Parkinson’s is unmanagable.  I know that when she has some major intestinal activity there is likely to be some fainting and maybe a time of mental confusion.  I know that if there will be a test done that demands her lying still, we need to skip the dose of her main Parkinson’s Med (brand name Sinamet) or the test will almost be impossible to accomplish, because of the dyskinetic movement that is now a side effect of that medication.  I know about how long we have to get from one place to another before she is likely to faint.  

One of the somewhat unique characteristics of Parkinson’s is that there is not much that is consistent and predictable. Medicine may work or may not work on a given day or at a given dosing time.  She may be able to walk long distances without fainting or faint sitting in a chair or immediately on getting up.  She may be up a dozen times on the commode during the night, or just a couple of times.  She may be wobbly or steady, sleepy or restless.  Even the best specialist in the field knows that one regimen of meds may work for one person but not another. 

Your Medical Degree is in the Mail!  You as the Caregiver actually serve as the Primary Care Medical Practitioner.  You need to know what medicine is being given for what symptom(s) and what impact it will have on the others.  The clearest example of the problem of competing treatments came for us when the treatment for Mary Ann’s Congestive Heart Failure and Cardiac Heart Disease stood in direct opposition to the treatment for her Parkinson’s.  The diuretics and low salt diet lowered her blood pressure.   The Parkinson’s meds lowered her blood pressure also, and the progression of the Parkinson’s compromised her body’s ability to adjust quickly enough to keep blood pressure high enough to stand up and remain conscious. 

Let me put it this way.  One doctor said, no pizza and Pepsi, the other one said, yes, pizza and Pepsi.  One treatment was to keep from retaining fluids, making the heart work harder, the other treatment was to keep enough fluids in her body to keep her blood pressure from dropping suddenly.  At one point I inferred from what the Cardiologist that the side effects (the dyskinetic movements) of her main Parkinson’s meds was threatening her heart’s health.  We stopped the Parkinson’s Meds and she turned to stone. 

Caregivers are advocates for the quality of life of their chronically ill partner.  In our case, the doctors we regularly use now understand the narrow margin of functionality within which we live. 

I wonder how many of you who are primary Caregivers have taken your Loved One to the doctor, only to be ignored by the staff and maybe even the doctor, treated as an annoyance who should keep your questions to yourself.  I do not have enough fingers and toes to count the times, either in doctor’ offices or hospital rooms that I needed to explain to the medical staff some of the very basic dimensions of Parkinson’s, the way meds should be given and what the side effects will be. 

Caregivers are the Primary Medical Technicians for their Loved Ones.  Don’t get angry about it, just do it.  Learn everything you can about the disease.  Go to workshops and support groups, whether face to face or online.  Write down the questions and demand answers in terms that you can understand.  Ask what every medicine is supposed to do, what its side effects are and how it will impact other problems and the medicines being taken for them.  Advocate for the best quality of life you can obtain, even if you run into some attitude along the way. 

Like it or not,  you are the Team Leader.  No,  you are not a doctor, you do not have the breadth of knowledge and training, but you know your Loved One better than anyone else.  You are an expert on his or her disease and its impact on your lives.  You see the whole person, not just the separate systems and body parts. 

Our experience has been that any time we have encountered a medical professional who is good, very good, who knows the area well, he/she has always been open and inclusive, listened well and explained well.  Seek them out.  They will help you find the best quality possible for and your Loved One in your time together, however long that may be.

If you have a story to tell from your experiences with medical professionals, tell that story here.  It might help someone who happens to find her/his way to this site.

By the way, today’s news from the Cardiologist was good news.   There has been no measurable deterioration, nothing new in the last six months.   For the moment, we get to keep our current normal.  We can live with that!

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.  Comments are appreciated.