We met with two folks from a local Hospice program for about an hour and a half this afternoon.  The construction has begun on the sunroom.  Lisa has arrived.  Three of the anticipated events have been (are being) realized. 

Lisa came in late in the evening.  Mary Ann was in bed but awake enough to get to see her and talk for a moment.  It will be interesting to see which Mary Ann will be present with Lisa during these three days, sleeping Mary Ann, hallucinating Mary Ann or lucid Mary Ann.  It could be all three who appear.  This form of dementia is so odd and unpredictable in how it presents itself. 

The folks from Hospice were, of course, very pleasant and engaging.  The one who took the lead was Nurse Lisa (same first name as our Daughter – lest you be confused).  She had managed to get information from the doctors, at least the Cardiologist.   She had read it over carefully and was fully aware of Mary Ann’s situation, at least to the extent of what was covered by the information she had received. 

They asked lots of questions, and listened carefully to the account of Mary Ann’s current situation and recent history.  There is a doctor in Kansas City who is charged with determining if Mary Ann’s problems rise to the level required for enrollment in Hospice.  The three general problems that will be evaluated are her heart issues, her late stage Parkinson’s and her dementia.  It is one of those three that must be at a certain level.   

One understandable but mildly disappointing observation made by Nurse Lisa was that Mary Ann’s dementia was certainly not bad enough to qualify her.  Understand, I would be happy to hear that she isn’t yet far enough along to require Hospice care.  Nurse Lisa made that comment after Mary Ann got up from a nap and I brought her to the table with us.  Mary Ann was alert enough to present herself well. 

Parkinson’s Disease Dementia [PDD]  is a Dementia with Lewy Bodies [LBD].  It is different from Senile Dementia or Alzheimer’s Dementia.   PDD/LBD does not move in a steady decline but erratically jumps between severe dementia, especially hallucinations, to lucidity, or sleep.  All of the LBD Spouses in the online group I am in know about “showtime.”  People with this disease can present themselves in a way that looks and sounds as if they are functioning very well.  Later this evening Mary Ann was hallucinating almost constantly, just as she had early in the day.

One of the challenges with this disease is finding people who understand it, or educating them so that they do.  We will find out by Friday what the doctor says about the assessment of her problems and their implications for enrolling in Hospice.  Since I will be out of town on retreat, they will call our Daughter Lisa.  By the way, our Daughter Lisa worked in a Hospice program in South Carolina for a few years.  She said that there and in the Hospice programs she has checked on the Internet, a problem called “Failure to Thrive” has often been used.  That is used when there are multiple problems, including weight loss.  Mary Ann’s height/weight ratio fits well within the range of those who qualify for other hospice programs. 

Nurse Lisa and the other Hospice rep named Chris mentioned that 20% of those who enroll in Hospice, eventually graduate.  That means they get better and no longer fit the criteria for enrollment.   If Mary Ann is enrolled, we will set graduation as a goal.  While the resources and support provided by Hospice appear to be wonderful, we have a pretty effective system already and would like to extend our quality time together.  Bythe way, a recent study is suggesting that those enrolled in Hospice generally live longer than those who are not enrolled in hospice.  The LBD Caregiving Spouses online group posted that information this morning, well before this afternoon’s meeting with Hospice. 

This morning we experienced the classic frustration of conflicting medical problems and treatments.  When Bath Aide Zandra was doing the morning shower, hair washing, dressing routine, Mary Ann fainted two or three times — once she bumped her head since Zandra had her hands full with soap and hand held shower sprayer and could not catch her in time.   I suggested to Zandra that maybe I could give her the Midodrine that helps raise her blood pressure before Zandra comes to see if it will help.  Then when Parish Nurse Margaret was here later in the morning to spend a couple of hours with Mary Ann so that I could have a break, her blood pressure measured 204/100.   There seems to be no way to keep her from experiencing a low blood pressure syncope (fainting) without raising her blood pressure dangerously high.  Imagine how high it would have been if I had given her a Midodrine this morning before Zandra came.

The jury is still out on whether eliminating the Amantidine is more good than bad (see last night’s post). 

After the meeting with Hospice, we managed to get to a Lenten Worship Service at church and the meal following.  At the meal, she was willing to let me feed her.  She ate a good quantity of food.  She usually resists letting me feed her in public.  It may be that there are so many church folks there who have been very accepting and very helpful to us, that Mary Ann simply feels secure enough not to be so concerned about what they think of her as she is being fed. 

The very noisy construction crew have been doing demolition and then preparation for putting in the subfloor of the new sun room.  It will be hard to put that project out of my mind so that I can relax for the three days I will be on retreat.    The time is set for John to come to the center and spend time talking tomorrow evening (see last night’s post)

It seems like such an important transitional time for us.  It will not be clear how important it is or is not until weeks or months later as this journey unfolds.  The Spiritual Formation Group’s conversation this morning centered on the matter of  looking for past times that ended up serving as teaching moments for God to shape who we are becoming. 

I guess it is still energizing and exciting to realize that even as Geezers we are growing and  becoming more than we have been and less than we will be.  It is sort of like Adolescence without the pimples!  (Constipation instead.)

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