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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