March 4, 2010

Hospice Report — Lisa’s Here — Construction Begins

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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.)

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.

 

March 3, 2010

Anticipation

Posted by PeterT under Daily Challenges, Family, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , |
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Connecting the posts on this blog to Facebook has brought a wonderful new dimension to this experience.  It is hard to describe how meaningful it is to be noticed by so many of the folks we have known and cared about over more than six decades.  It is easy to feel very isolated when spending most of every 24 hours inside a small townhome.  It is hard to feel isolated when reading comments of so many who wish us well.

It struck me today that it is a time of anticipation.  So many things are converging on the next few days.

  • The Neurologist okayed the removal of one of Mary Ann’s long time meds.  It is called Amantadine.  Its purpose is to reduce the dyskinetic movements produced by years of taking the main Parkinson’s med, Sinamet.  Dyskinesias are the wavy  movements that are apparent when Michael J. Fox is on television.  Those movements are not caused by the Parkinson’s but by the medication that gives basic mobility.  The Amantadine can trigger hallucinations and fainting spells (Orthostatic Hypotension).  Both are major problems for Mary Ann.  We will see if the trade-off is worth it.  We have stopped the Amantadine and we are waiting to see how Mary Ann will fare.
  • We are anxiously awaiting our Daughter Lisa’s arrival late tomorrow evening.  We both love having our children with us.  Lisa lives a ten hour drive away.  On that account it is a special treat.  It will be good for both Mary Ann and Lisa to have a couple of days of one on one time.
  • I am anticipating almost three days of solitude at St. Francis of the Woods Spiritual Renewal Center in North Central Oklahoma.  I will hike and read and pray and sleep and listen to music and look for birds and varmints of all sorts.  I will walk for hours and let the endorphens wash over my brain.  I will think about where we are in our lives and how to better deal with it all.  The reading will include devotional material, the Scriptures, a couple of books that deal with Quantum Physics and Theology. I will do each thing if and when I choose.  For a few hours the locus of control will shift from external demands to internal needs.
  • I am anticipating, assuming it works out, time talking with as good a friend as a person could have.  Many years ago John and I spent hours talking as he was going through the loss of his wife to Cancer and I was trying to come to terms with Mary Ann’s Parkinson’s.
  • I am anticipating a visit at our house tomorrow afternoon from a couple of people on the Staff of a local Hospice program.  They now have access to all of Mary Ann’s doctors, and whatever information they can gather from them.  I will, of course, have many questions.  There are certain criteria that must be met to be served by Hospice.  Actually, I would like very much to be told that Mary Ann is not yet eligible for Hospice.  This is a time we would love not to measure up.
  • I am anticipating the delivery of materials tomorrow and the beginning of the construction on our new sun room, which will become interior space in the house.  When it is done, we will be able to see from the inside of the house the waterfall project that was done six months ago in our back yard.  Since we are here pretty much 24/7, we want the best and most nurturing environment possible.  I am bummed that the project will begin while I am gone.  The weather here forced the later beginning time.
  • I am anticipating sitting with Mary Ann (depending on how she is doing) and Daughter Lisa and Son Micah this Saturday evening to talk about Hospice, especially the prospect of putting in place a Do Not Resuscitate (DNR) order.  This has been a tough journey for the kids.  Gratefully, they are committed to whatever seems best for both Mary Ann and me.

The day went pretty well today — better than I expected since she is in the hallucination cycle.  She went to her Tuesday morning group and tracked well there according to Mary, who sits next to her.  There was some intestinal activity, but since a number of the ladies in the group have served as Volunteers with Mary Ann, Eva and Mary managed to deal with the situation. While Mary Ann was meeting with hergroup, I enjoyed some time talking over coffee (PT’s of course) with the Pastor who is now in the position of Senior Pastor from which I retired.  It was a good time together.

Mary Ann wanted to go to McFarland’s, the restaurant at which we were eating when I decided that it was time to retire and be with Mary Ann full time.  I thought again how grateful I am to God that the decision was so crystal clear.  It took approximately 13 seconds to finalize that decision as I watched Mary Ann struggling to eat.  Today she struggled again.  She got nothing in her mouth until she finally agreed to allow me to feed the hamburger to her.  I had long since finished my meal.  With my help she was able to consume two quarters of the hamburger.  She had some left over Baskin & Robbins ice cream from the freezer when we got home.

Later we managed to get out to the grocery and buy lots of food, especially ingredients for Lisa to use to make some things for our home freezer that I can thaw and just pop into the oven.  That is a tremendous help to us, since I am well-known for my lack of skill in the kitchen.

Supper was another challenge, but she did get some food down.  She then ate the new two scoop B&R treat that we had brought home this afternoon.  Are we bad or what!

Tonight the dreams and hallucinations are active.  She called me to come in and said, “I am awake, but I don’t know how to get up.”  She thought it was daytime.  She had one of the dreams that she cannot differentiate from reality.  I was taking a Call (another position at a church somewhere), and we had to get ready to leave.  There was a hug and a kiss when I told her I am not going anywhere, I am for her and her only.

Well, there is no telling what tonight and tomorrow will bring, but whatever it is, we will make the best of it, grateful for the time together.

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.

 

March 2, 2010

Time to Accept a New Normal

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , |
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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.

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.

 

February 27, 2010

Neurologist’s Office Called

Posted by PeterT under Daily Challenges, Family, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , |
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The fax is working!  It seems to be a great way to maximize the quality of the communication with the doctor.  Even though Mary Ann’s appt. is not until Monday, the Neurologist, Dr. Pahwa, has read the fax.  Through his Assistant, Stepanie, he contacted us by phone with a couple of things to think about before Monday. 

The first is that we think about whether or not we will want a referral to a Psychiatrist to deal with the decisions about what meds will serve best in dealing with the hallucinations.  I will, of course, ask for a referral to someone who knows Parkinson’s Disease Dementia and Lewy Body Dementia and what differentiates it from Alzheimer’s Dementia.  It needs to be someone with a large enough patient base of those with Parkinson’s Disease Dementia to be able to speak from experience as well as from book learn’n.

The second suggestion was to think about a referral to a Hospice program.   Medicare and many other insurer’s require a prognosis of six months or less.  I have not yet phoned a Hospice program to be sure what their requirements are, but the marketing materials often talk about a Palliative program that is a longer term intervention that provides a transition to the full Hospice care.  

Having been a Pastor for forty years, I have interacted with Hospice and many who have used it.  The reactions have been almost unanimously positive.  Many in the online Caregiver Spouses group have used Hospice.  Most in that group have had positive experiences. 

Whatever insurance and Medicare do or do not require, there is an expectation that the person being enrolled will not be resuscitated if they experience a cardiac arrest.  There is the rub.  I am not sure that Mary Ann and I are ready for that.  Four months ago, I doubt I would have seriously considered it.  Now, as much as she has declined in the past few months, I am willing at least to consider it.  I am not sure Mary Ann would be willing to accept a DNR order.   Actually, not long ago, our Daughter-in-Law had relayed a suggestion to us from a friend who had read this blog.  That suggestion was to check into hospice.  At that time I started thinking again about the DNR issue.  Mary Ann has declined considerably since that suggestion and its consideration. 

This Wednesday evening, our Daughter, Lisa, will arrive from Louisville, KY, to stay with her Mom for three days, while I have three days of respite at a Center for Spiritual Renewal in a beautiful rural location in north-central Oklahoma. 

In talking with Lisa this evening about the Hospice suggestion, she admitted that it was something she was intending to bring up during her visit.  She has been an Administrator at a very large CCRC, mult-layered complex for older adults.  She supervised the construction and staffing of a dementia building there.  She has also served on the Staff of a Hospice program in South Carolina, working with Volunteers. 

My hope is that our Son, Micah can come from Kansas City so that we can all talk about the matter of Hospice and the DNR that will be required if we choose to enroll MaryAnn.   Our Daughter, Lisa, and our Son, Micah have been a tremendous support.  I respect their ability to process the options with wisdom and rational thought laced with love and concern for both Mary Ann and me.  

Last night was another difficult one.  She was up for a number of times, not as many as some nights, but at least six or eight times.  There were dreams to be dealt with.  She needed to get up very early again, but this time a little single serving applesauce won us another hour or so of sleep. 

One of the times, around 6am, I heard her and awoke to see her standing by the bed.  I rushed over to see what she needed.  I asked if she needed to use the commode.  She seemed to say no, but then talked very fast with slurred words that were unintelligible to me.  She did that a second time.  I tried to manipulate her to sitting back down on the bed. 

It was not until the moment I reached around and got her moving into the sitting position that I realized that she had pulled down the pj’s and disposable and there was soft stool to be dealt with (sorry!).  There followed moving her quickly to the commode, changing clothes and rinsing out bedding so that it could be washed. 

At that moment I started thinking about how to title this post in a way that would change yesterday’s title “Difficult Day” to whatever comes after that that would indicate the next level of difficulty. 

Gratefully, the day improved some.  Actually, Mary Ann had a pretty good day.  I was glad for that since friend Jeanne had visited last week and Mary Ann slept almost entirely through the time she was here with Mary Ann.  Jeanne had a good part of the day able to interact with Mary Ann today. 

One odd moment came when I returned from some errands to find Jeanne very excited about the fact that our Daughter, Lisa was, according to Mary Ann, pregnant.  Mary Ann was convinced that I had told her Lisa was pregnant.  She, of course is not pregnant.  The fact that there simply are no boundaries between dreams and reality for Mary Ann creates some very interesting and sometimes bizarre results. 

Mary Ann is still in hallucination mode, but it has been a little more manageable today.  She did nap for a time this afternoon.  She ate very little supper and was not interested in my help.  She did not even eat the ice cream treat from Baskin & Robbins.  That actually is distressing since I have counted on at least being able to get some calories in by giving her ice cream.   Mary Ann’s recent weight loss seemed to Lisa  be especially relevant to the discussion Hospice Discussion.

Mary Ann is in bed now, and has not so far needed my intervention.  That has no bearing on how the rest of the night will go, but it is allowing me to write this post with fewer interruptions.   Here is hoping for a few hours of uninterrupted sleep tonight.

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.

 

February 26, 2010

Difficult Day

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This was one of the difficult days in the cycle we are in.  As much as I want her to be present with me, I was grateful when she took a couple of naps.  I don’t really know how to explain how difficult it is when Mary Ann is weaving hallucinations/delusions/dreams with moments that seem lucid, at least on the surface.

This mode demands full and constant attention.  Since she can’t differentiate what is real from what is not real, I am expected to deal with things that are not there.  Every task demanding my participation is multiplied exponentially in difficulty.

Of course she started trying to get up between 5am and 6am.  Then she was in the intense sort of mode that has a bit of an adversarial tone.  On days like today, she may be mobile on her own one minute and then weak and confused with her eyes shut the next moment.  When she is in that mode she often can’t connect with the simplest things.  If I ask her to sit down to put her pants on, she may stand up.  She may think we are in the bathroom when we are in the bedroom.

Eating is a nightmare.  When she will allow me to help, she often moves her hands in the way of the food as if she has food in her hands, or put her head down in a way that won’t allow me to put the food in.  She tried to drink the chips from the little pyrex dish, then she tried using a fork on the chips.

In this mode she will often not answer a question or say a word that doesn’t fit, then get angry with me for asking her again.  Sometimes she will say no to a food, but eat it when I put it to her mouth.

It is almost impossible to find out what she wants or where she wants to be.  At one point, she wanted to write a thank you note to a fiance’ from fifty years ago whom she decided had come by to visit.  Another time she just said she wanted her chip autographed.  I said back to her those words, and she confirmed that is what she said.  I, of course, have no idea what that was about.

It was a difficult day also because I find it physically very taxing to lift, move, twist her into the transfer chair or the chair at table when her eyes are closed and she has no spatial awareness to help.  Constantly getting her into and out of bed, turning her from facing one side to facing the other, demands physical strength that is right at my limit.  So much of the time in days like today, she is minimally helpful in that moving.

I tried to nap this morning during her first nap, but it was a restless one for her, so I needed to be up, helping.  Very soon she was up again.  Finally, this afternoon, I was able to rest in bed for about an hour while she was napping more soundly.

She has been incontinent in bowel activity and having bouts of mild diarrhea.  The tasks that are associated with that problem have been increasing and were included in today’s struggles.

I am disappointed in myself that it takes so little time when she is in this sort of mode for me to feel as if I am at the limit of my capacity to cope.  It would seem as if I should recoup when she has the sleeping days or a good day, and then be able to keep things in perspective, dealing with great patience on the bad days.

What seems to happen instead is that as soon as there are even signs that one of these especially frustrating times is coming, the dread emerges.  When the day comes, of course, it is after a challenging night.  With the difficult day comes the awareness that this is what is likely to be the norm more and more as the days and weeks and months and years go by.  As much of a struggle as today has been, it is only a taste of what is likely to be in store, judging from the experience of others.

I understand that the difficulties today are just for today.  Tomorrow may be better or worse, but that will be for tomorrow.  Were I perfectly rational and dispassionate, I would be able to take each moment as it comes without feeling the weight of past struggles and ones yet to come.  I am not perfectly rational and dispassionate.  I am alive, able to feel the frustration and helplessness and sadness to the core of my being.  With that comes the capacity to experience the full range of what it means to be alive, feelings of joy and exhilaration.  I guess the trick is to retain the capacity to experience fully the extremes that come with truly being alive without getting lost in one or the other.

Mary Ann’s friend, Jeanne, phoned today and will come tomorrow for part of the day to be with Mary Ann.  She came a few days ago to spend time with Mary Ann while I met with a friend, but Mary Ann slept the entire time Jeanne was here. Tomorrow’s visit will give me a chance to get the van serviced.  I was having difficulty figuring out how to get that work done given Mary Ann’s current condition.

Needless to say I am hoping for a better night and a better day tomorrow.  I can hope.

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.

 

February 25, 2010

Fax to Neurologist

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It is done.  I sent two pages of recent events and current symptoms to the Neurologist in the Parkinson’s Clinic at the University of Kansas Medical Center in Kansas City.  Dr. Pahwa is one of the best in the nation, especially in the area of the Parkinson’s meds.  I am not sure to what extent he specializes in the dementia that is unique to Parkinson’s, but he certainly has a large enough patient base to have lots of experience on which to draw.

I think anyone who has complex medical problems ought to consider the approach of putting the information in writing and the questions in writing.  It seems logical to me that getting it to the doctor in advance of the appointment, even if he/she only sees it a few minutes before entering the examination room on the day of the appointment, will help create a better communication and exchange of information.

My impression is that the doctor focuses full attention on a particular patient by reading the chart carefully to reclaim the recent medical history.  Maybe it is a little like cramming for a test.  No doctor can keep a full and current awareness of every patients’ symptoms and their history of treatment.  Reading the chart fills the doctor’s mind at that moment with whatever is immediately available to him/her.

The fax contains recent history that I might not have remembered in detail in the heat of the moment in the exam room.  The written material gives the doctor a window into Mary Ann’s situation beyond what he will see in the ten minutes we are with him.  She may be lucid at that moment (the online LBD Spouses group calls that showtime).  He will conclude that what he sees is how she is.  Dr. Pahwa listens well and asks good questions, but he can’t help but be influenced most powerfully by what he sees in that room.  The fax gives him a history of all that I have seen in the past few weeks as well as what he is seeing.

I included in the material faxed to the Neurologist a third page, a full and current list of all the medicines that Mary Ann is taking, dosages, time of day the pills are taken.  Especially when there are a couple of specialists (Cardiologist and Neurologist) and a Primary Care Physician doing prescribing, it is necessary to have absolutely accurate information available to each one that includes all the meds.

Mary Ann has a regularly scheduled appointment with Dr. Pahwa this Monday afternoon.  I am going into the appointment willing to accept the possibility that this is the best we will get and no changes in medication are likely to help.  I am hopeful that there are some changes that can be made with the possible result of a better quality of life.  I am also fully aware that the risk is high that any change in meds might make things worse, causing a further decline, a potentially irreversible decline.  Mary Ann always goes in with the hope that she will be able to take fewer pills or find the magic pill that will make everything okay again.

Last night was not a good one.  Mary Ann was up a number of times, ready to get up for the day beginning around 3:45am.  She got up at 6:30am, when I got up to prepare for the Spiritual Formation Group that meets here at the house.  It is always distressing to me when she is up at that time, since I have a short time to get things ready for the group and no time to spend helping Mary Ann.  Before this decline, she almost always remained asleep during my prep time and part or all of the time until Bath Aide Zandra arrived.

She was in that intense mode that his hard for me to deal with, lucid, but on the edge of the dementia.  Gratefully, Volunteer Maureen arrived at 7:30am, just as I finished giving Mary Ann her pills and feeding her the daily yogurt (need those live cultures).  I was able to get to the group meeting downstairs.

It was a busy Wednesday.  Zandra came to do Mary Ann’s shower and hair.  She said Mary Ann was doing a lot of leaning over, seeming to be tired — understandably since the night was a very restless one.

Kristie came to do the monthly house cleaning. Since Mary Ann had gotten up so early that she ate lunch at 10:30am.  Volunteer Rebecca came from 11:30am to 2pm.  I was able to get away for a while.

I returned with Baskin & Robbins ice cream treats, as promised.  Mary Ann, surprisingly, declined hers and instead, asked to have supper.  She ate supper (the other half of the sandwich she had for lunch) at 2:30pm.

Not long after eating, she lay down for a nap.  She had been sitting with her head in her lap for a while.  Later in the afternoon, she got up and ate the ice cream treat.  The hallucinations began firing up as the afternoon wore on.

She got up again and had a little to eat, some pear sauce.  That is like applesauce, but made with pears.  Maureen had brought that, along with a large jar of frozen chili for future use, cinnamon rolls, and a dozen or so cookies.

Mary Ann headed to bed around 7:15pm.  I fully expect the vivid dreams and hallucinations to dominate the night, since that would fit the pattern of the last few weeks.

I guess I was right.  She just called my name.  When I went in, she was sitting on the side of the bed.  I knelt down in front of her and asked what she was seeing.  She was distressed that the people were beating on me.  She had her eyes closed and was continuing to see that happening.  She started crying for a bit.  I kept saying that I was all right and no one was hurting me, but she couldn’t open her eyes and let go of the hallucination.  Finally she calmed and was willing to lie down.  It is only 10:20pm, and it has already reached this level of intensity — does not bode well for either of us getting a lot of sleep tonight.

On the positive side, there were two very helpful times for my personal/spiritual health.  In the Spiritual Formation Group this morning, we each picked a favorite Psalm.  We applied three question to the Psalms: what is particularly meaningful to us in the Psalm, how can something of its message be incorporated to the ordinary stuff of our days, and is there a present day metaphor that might be used to communicate the message of the Psalm in contemporary terms.  The discussion that followed was very stimulating and thought provoking and meaningful.

The time away this afternoon was spent at a coffee shop (not PT’s but serves PT’s coffee) for lunch and some reading.  I know and enjoy the young family who own the shop.  After a while a former parishioner happened by.  Donny is a very pleasant fellow. He and his family are also folks I cherish.

After a conversation about a variety of things. Donny asked what I was reading.  As I described the book, it became clear that he also is intrigued by scientific inquiry and its relationship with faith.  I think he was a little surprised at my interest in Quantum Physics and things like String Theory.  I am not so much conversant in either subject as I am intrigued by them and fascinated by their potential implications for people of faith and theological conversation.  It was a very enjoyable mental respite from the daily struggles at home.

It is time to head back to the bedroom and see if my presence and familiar voice might help calm some of the distress the dreams/hallucinations/delusions produce.

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.

 

February 24, 2010

Only One Good Day!

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And that day was yesterday.  This morning she awakened up early and had the sort of borderline lucid but intense demeanor that usual signals the return of difficult times.  Her blood pressure was up again (200/110), moving us back to no Midodrine.

She did all right getting ready and eating breakfast (of course with me feeding her), and seemed to be doing reasonably well when I took her to her Tuesday Morning group. She apparently did very well in her group, tracking and responding (softly) appropriately a couple of times.  By the time I came to pick her up, she had started leaning to the side  Her eyes were closed and she was not responsive.

In the car I suggested some options for picking up food or eating out.  I was very apprehensive about the trying to eat out, but at this point I will do anything to get her to eat.  She liked the idea of eating at BoBo’s (the local diner that made the Food Network’s series on Diners, Drive-ins and Dives).  I thought about getting take-out, but fries and burger would be cold by the time we got to the house.  Mary Ann wanted to go in.

I knew it would be a challenge since her eyes were still closed and she was moving with great difficulty and struggling with communicating. I am now physically exhausted from getting her in and out of BoBo’s and feeding her.  Maybe I am also emotionally exhausted.

I got her into the booth, but she was leaning and having trouble sitting up.  I had talked with her enough in the car before arriving to be able to order right away, a cheeseburger, fries and a chocolate shake for her.  I ordered my usual fish sandwich.

As soon as the food arrived, it was obvious that Mary Ann would not be able to eat it by herself.  I moved her over and sat beside her in the booth (BoBo’s is very tiny with people on top of one another).  We were there shortly after 11am, so I hoped we would be in and out before the crowd — flawed thinking.

On the positive side, she ate most of the hamburger and shake.  However, feeding her was terribly difficult in that setting.  Since she could not sit up or hold her head up, I had to hold her up with one arm, using the hand on that arm to hold her head up, while using the other hand to feed her.  They had cut the burger into quarters at my request.  I am surprised at how physically challenging it was to hold her up that way while feeding her.

The shake was a special challenge.  At first, I used a spoon.  It is hard to communicate how difficult it is to get something soft and melting into a mouth that is hanging down over the table.  Her neck muscles are very strong and stiff, so pulling her head back to keep her mouth accessible takes all the strength I can muster.  She does not seem to balk at my pulling her up that way, so I don’t think it hurts her in any way.

After trying to use the spoon on the shake, I decided to wait and let it melt so that she could use the straw.  It was too thick for her to pull it through at first.  Later, after it melted, she was able to pull it up through the straw.  To make that work, I had to hold her head up with one hand (the one on the arm wrapped around her body) and hold the shake in her lap so that the she could get her mouth on the straw.  Again, the good news is that she drank most of the shake eventually. I felt pretty wimpy to be exhausted and sore from feeding Mary Ann lunch, but I guess I will have to accept that I am not as young as i used to be.

When we got to the house after BoBo’s, she was beginning to hallucinate a little (seeing a tube of something on the floor, there was nothing there).  After a trip to the bathroom, she went right to bed (about 12:45pm).

I am disappointed that it is appearing that this time we are getting only a little more than one good day after the last round of a couple of days of hallucinations and a couple of days of sleeping.  The last time we got almost three good days before the the troublesome ones returned.  Maybe she will be fine after a nap.  I guess it is apparent that I am not very hopeful about that.

The problem eating at BoBo’s today has the potential of having some lasting fallout.  There is now vividly ingrained in my psyche a disincentive to going out to eat.  I will need to be confident that she will not have such a difficult time and need so much help before risking eating in a restaurant.  I realize that this experience needs not to steal from us the freedom to go out.  Those feelings will, however, play into every decsion about whether or not to go out from now on.

She slept with only a commode break or two until 6pm when I got her some supper.  She allowed me to feed her, so she got a reasonable amount of food.  The hallucinations were not terribly strong during that time.  She sat in her chair for a few minutes after supper, and then headed in to lie down again.

She has the television on and has been restless for the last three hours.  I am at a loss to predict how things will go tonight and tomorrow.  Patterns just don’t ever stick with this disease.

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.

 

February 23, 2010

Awake, Lucid and Fainting

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Sitting in the transfer chair in front of the television, she just fainted.  I took her blood pressure as soon as I could get the cuff on her arm, the stethoscope in my ears and the cuff inflated.  It measured 80/50.  About five minutes later I took it again.  Then it measured 90/60.  Remember the three weeks it measured 220/120 when I took it first thing in the morning?  Check a few posts back.

I started her on a half of a Midodrine pill three times a day.  I got in two doses today.  And so the roller coaster goes up and it goes down.  Today is the best day in the last four (if I am counting correctly) in terms of Mary Ann being awake and lucid.

She got up in time to eat and take pills before Bath Aide Zandra came this morning. While I needed to help her with all that she ate, she had a good quantity of food. She did faint more than once for Zandra as she was trying to give her a shower.

She sat up in the chair for the rest of the morning.  It was the longest she has sat up in the chair in many days.  There has been no evidence of hallucinations today.  She ate reasonably well at lunch, having a big bowl of ice cream for dessert.

After lunch she sat for a while and began slumping over some.  Soon she got up to go in and take a nap.  She slept until supper.  She ate reasonably well (I actually cooked) and had a lemon bar for dessert.

Since Volunteer Twila came for the evening, I was able to get out for a while and bring back for her a couple of scoops of Baskin & Robbins.  She ate that treat right away.  It was not long after that that Twila left and she went to bed.  She has been down for a couple of hours, either watching television or sleeping.

I have finished the fax to the KU Med Center Parkinson’s Clinic Neurologist and intend to send it tomorrow.  As I finished it, I could describe what has become a pattern for the last three weeks: two days and two or three nights with streaming hallucinations any time she is awake;  then two days and two or three nights of sleeping all the time (day and night); then a couple of days and nights in which she sleeps at night and is awake and lucid about half of each of the days.  Then the cycle begins again.  This is the closest we have come to a pattern in a long time.  It is not a wonderful and pleasing pattern, but at least it provides something coherent to communicate to the doctor other than constantly unpredictable changes.

Last night instead of getting to bed early as I had planned, I checked out some of the Taizé music on YouTube.  I followed it with some Russian Orhodox Liturgical Chant, also on YouTube.  That hour or so was very nurturing spiritually.  Since the snow and Mary Ann’s sleeping through the entire day precluded getting to corporate worship, I needed the sabbath rest more than the physical rest.  Tonight for part of the time I found a spot with enough light at PT’s coffee shop and read the book on science and religion called The Mind of God by Paul Davies.  I mentioned it in a prior post on this blog.  The author does not believe in God as do I, but his approach certainly makes it clear that he does not rule out that possibility.  He seems to be arguing for belief, based on the science, even though he does not claim belief.  My faith is nurtured rather than challenged by what I read.

As I have repeated far too many times, this is a particularly difficult time in our journey.  The Spiritual nurture is a key element in sustaining me during this time.  I am grateful for Mary Ann’s strong faith as we journey together.

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.

 

February 22, 2010

Snowed in and Asleep

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I am beginning this post shortly after 2pm today.  Mary Ann settled into full sleep last night some time between 12am and 1am.  Other than two trips to the commode, she has been sleeping ever since. 

Just a few minutes ago she called my name, I went in and got her on the commode.  I told her about all the snow, she responded appropriately and clearly.  In moments, she was back to being unable to respond.  All she could do was make a grunt.  I tried to talk her into getting dressed.  She was just too non-responsive to manage that. 

I managed to get the Exelon patch changed, but she was not interested in taking her meds.  I don’t think she could have awakened enough to get the meds swallowed.  I reluctantly put her pj pants back on and let her lie back down.  She was having trouble continuing to sit erect on the side of the bed.

As always, I am grateful to have gotten a full night’s sleep.  While I don’t like losing her presence when she is in the daytime sleeping mode, sometimes she is fairly lucid for a while after she has slept off the last bout with streaming hallucinations.

Sooo close!!  Almost made it!  At about 2:30pm I decided to get something to eat.  After I got something heated and started eating I heard her.  By then it was 2:45pm.  I asked if she was ready to get up.  She said she was.  I suggested getting dressed before pills and food but thought better of it when she couldn’t seem to geet her eyes open. 

She drank some apple juice (with Miralax) and took her pills — I put them in her mouth and put the straw to her mouth to take with with the juice as is now the norm.  I fed her a container of yogurt.  Then I started suggesting cereal options or whatever might interest her to eat.  I remembered Mary’s jello (green jello, pineapple, cottage cheese and Cool Whip).   She wanted that and ate a good-sized serving.  It should be helpful since there is protein, calcium, fruit and carbs in it. 

Then I joined her at the table and finished my bowl of beef and noodles.  She asked where “Dad” was.  I think that would be me.  When I asked who she was thought I was and she answered “Mom.”  At that point, I suspect she had connected better and was just being silly — not sure about that. 

Anyway, as soon as we got back to the bedroom to get her dressed — you guessed it.  She needed to lie down again for some more napping.   That happened a little after 3pm.

Mary Ann got up again at about 6:45pm.  There was an odd irrational hope that the fainting issue had just sort of left her.  At the same time, I knew it would return eventually.  Earlier today I worked on re-writing the fax to the Neurologist and had mention dropping the Midodrine until the fainting returns.  I knew it was wishful thinking to expect the fainting to stay away.

Well, it has returned.  She fainted twice while in the bathroom, once on the stool and once when I returned her to the transfer chair.  She fainted again when she decided to stand up while sitting in front of the television.   What an insidious disease this is.  Not every person who is diagnosed with Parkinson’s will have to deal with quite this many symptoms in such severity.  It is the major heart problem combined with this form of dementia that has produced so many debilitating symptoms. 

It was not long before she decided she wanted to go back to bed.  She had said she did not want to eat when she got up this time.  I asked her again, listing lots of things as we were ready for her to get back into bed.  She agreed to go out to the table.  Again, she chose Mary’s jello.  I fed her a large dish of it. 

She is now back in bed.  It is 7:15pm, which means she was only up a half hour.  I am readying myself mentally for a difficult night.  She has slept through days and nights before, but it seems unlikely to me that she will manage to sleep through tonight also.   The most I can do to prepare is to get to bed early enough to increase the odds of getting some sleep even if it is a bad night.  I got a good night’s sleep last night.  That will help.

My day was spent mostly reading posts of those in the online Caregiver Spouses group and the Kansas Birders.  I managed to rewrite the fax to the Neurologist and update it.  I did get outside to shovel off the deck and a path to the birdfeeders.  It was good to get a little exercise and get the birds some food that is accessible in six or so inches of heavy snow.  I am often annoyed on days like this that I still manage to procrastinate on many of the tasks on my list of things needing to be done.  There is in the back of my mind the likelihood that as soon as I get the preparations made for doing whatever it is, Mary Ann will be up and in need.  It is as good a reason as any to put off until tomorrow what could be done today.   (Isn’t that how that saying goes?)

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.

 

February 21, 2010

Chocolate Boost and Ice Cream?

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , |
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Maybe that will be the formula, chocolate Boost and vanilla ice cream blended together.  We now have both in the house — just this afternoon — haven’t tried it yet.  She let me feed her the yogurt at breakfast, so she had that and some juice.  After a long nap, we headed out to Perkin’s and ordered the usual, for her three buttermilk pancakes and a half order of bacon.

The last time we were at Perkin’s, I seem to remember her letting me put the bites of pancake into her mouth.  This time she refused.  I suspect that the number of small pieces that made it to her mouth could be counted on one hand.  Finally, she let me at least hold the bacon up to her mouth so that she could eat most of the two pieces she was served.

We went to the grocery after leaving Perkins.  I bought lots of ice cream (bad for me, good for her) so that no matter what she did not eat, there would always be that choice.  I had posted a request in the online Caregiver Spouses group for a good tasting supplement to use for Mary Ann, one their Loved Ones had enjoyed.  Two of the three responses mentioned Boost.  We had tried Ensure a few years ago and at least at that time, it tasted very chalky to us.  Mary Ann was not interested in that option.

Even though we had eaten only an hour or so before, I asked if I could get her some Sesame Chicken from the Chinese food counter at the grocery.  I just wanted to get something, anything, into her stomach.  She decided that she did want the Chinese food. At first, she would not let me help her with the food.  Finally she did let me help and she got a reasonable amount down.  Later when it was time to go to bed, she wanted a single serving Tapioca pudding, even though I offered ice cream.  That seemed a little bizarre.

As to how last night and today fit into the sleep versus hallucination days and nights, it was almost constant hallucinations.  Last night, she was up very many times early in the night with all sorts of the usual hallucinations.  It was not a good night at all.

She got up early, as usual after a bad night.  At one point during that early time, she just began talking as if we were in the middle of a conversation, saying that I could begin calculating the rent.  On pursuing what she was talking about, she said, “well we know where this is going.”  I assumed she was talking about some option for full time residential care for her.  No, she was referring to the rent for a place for her, since I was moving out.  (Don’t expect consistent logic in hallucination/delusion thinking.)

I recognize that these are hallucinations/dreams/delusions and come from random thoughts firing.  What I am concerned about is how sad and scary it must be for her to have moments when she is convinced that she is being abandoned.  Oddly, in the last weeks, since that one especially powerful Sunday morning experience at the lake, I have been consistently more thoughtful and patient with her.  Maybe losing Grumpy Caregiver has unsettled her world — as in when the normally thoughtless husband suddenly brings flowers home for no obvious reason.

As usual, she lay down shortly after morning juice, yogurt and pills for a nap. This time, I went into the bedroom to lie down also.  I decided that I had better use the time to get some of the sleep missed last night.  (Yes, I am listening!)

After a couple of hours, she was crying out loud as she was dreaming.  When I went over to talk with her, this time it had to do with a conference one of our kids and spouse were having working out their divorce.  I never found out which of the kids was in the dream. I got her up, dressed and hair washed — then to Perkin’s.  Both our kids and spouses have the sort of marriages any of us would want for our children.  There is nothing floating in the air to trigger Mary Ann’s fears.

Hallucinations were pretty constant when she was awake.  Tonight they are continuing.  She fell once while I was not in view of the monitor screen to get to her fast enough to keep it from happening.  She said she was up to brush her hair.  She wanted to put her jeans on.  Again, even though it was 9:30pm and dark, she thought it was the morning.  She wanted me to whisper when I talked to her so that the people would not hear.

I am hoping for two or three good nights, since she usually has much less problem with the hallucinations when she is sleeping well.  When the sound sleeping comes, it tends to steal from us the days as well.  When she is sleeping during the day, I am grateful to have relief from the intense and constant needs, and I am also very grateful to have her here with me in the house, but there is a sense of being trapped and alone.  Since I thrive on solitude, it is not a major issue, just a sometimes uncomfortable awareness.

In March, it will be twenty-three years since her diagnosis with Parkinson’s.  The Parkinson’s has been joined by the major heart blockages with a hospital stay that unraveled my ability to cope, the life-threatening pneumonia on a trip to Tucson with phone calls to the kids to come since she might not survive, the stroke that came a couple of months after that, now the Parkinson’s Dementia with Lewy Bodies.

This has not been an easy journey for Mary Ann especially but also the kids and me.  I am grateful now to have only the challenge of doing a good job of supporting Mary Ann as she deals with all of this, rather than at the same time having the challenge of serving a parish responsibly as Senior Pastor.  With that said, the journey now seems at some level to be still more difficult than much of what has gone before.  What’s more is that what we are experiencing now seems to be just the beginning of much more difficult times — at least judging from what others have gone through with their spouses who are experiencing some form of Lewy Body Dementia.

Gratefully, whatever comes will come one day, one hour at a time. We need only the strength to deal with each moment as it comes.  That is the way it is for all of us whether we know it or not.

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.

 

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