March 21, 2010

Confusion Keeps Me Close

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , |
1 Comment 

She wondered if Daughter Lisa was looking for an apartment for her and the girls.  I realized quickly that there had been a dream/hallucination/delusion at some point about our Daughter and Son-in-Law.  Mary Ann was convinced that Denis had asked for a divorce.  When I explained that they were solid as a rock, happily married and there was no divorce talk there, she said she had wasted a lot of time with her stomach in a knot.

Then came a part of the dream that she even thought was pretty silly.  There were Mormons who were trying to take over Denis’s Dad’s farm.  I guess they were some of his brothers, who were trying to talk him into becoming Mormon.  I have to say I am at a complete loss to figure out from where the scenarios for some of the dreams/delusions/hallucinations come.  Many seem to simply be misfiring neurons that use bits and pieces of material residing in distant corners of the memory banks.

When she insisted on getting up early, I knew today would be a difficult one.  I thought there might be some napping, freeing me to do other things.  She was up most of the day, confused for the majority of the time. When she is alert and just on the other side of lucid, it is more difficult for me to manage than many of the other challenging times.  Like many who are retired some days it takes me a while to figure out what day of the week it is.  I did not try to count how many times she mentioned the day and got it wrong or asked what day it was. More than once, she thought it was Easter.

There were things (invisible to me) one place or another in the house, things that needed explanation or needed to be picked up or dealt with in some way.  She stood up dozens of times to do something, often not knowing what.  I could not leave her side for more than minutes. It helped a little that there was an NCIS marathon on television.

She did eat pretty well. Very early this morning she started snacking since she had eaten very little at supper last night.  There was tapioca at 3:30am, applesauce at 5:30am and chips at 6:30am or 7am.  She ate her normal breakfast and lunch (with ice cream), and ate lots of the sausage, potatoes and onions I cooked for supper. It was her idea to get the ring of sausage the last time we went to the store.

While I did feel sort of tethered to Mary Ann’s side today (she doesn’t much like my hanging around and jumping up with her, always asking where she is going) there was a treat that helped keep me interested and engaged in the day.

We woke up to between five and six inches of snow.  Since the construction began, the birds have not been around.  The feeders had to be taken down so that they could work on the deck. The snow brought the birds back, by the dozen.

The waterfall was a draw.  There were birds of one sort or another in it most of the day.  There were still three feeders hanging from a stand in the back yard next to the waterfall.  There were some places that because of the overflow of water had hundreds of sprouting sunflower seeds.  A few birds managed to find there way through the snow to a spot in the back yard.

At the front of the house where some small feeders are located by and on the window, birds were busy.  The street in front of the house was filled with Robins drinking the melting snow.

We have a very good quality speaker in the house with a microphone outside, the wire coming through at the corner of a casement window.  When that microphone is on, the sounds of the birds are full volume inside the house.  The speaker is made for that purpose.  It was a present from our kids.

With probably a hundred or hundred and fifty birds spread among the trees in the back yard and the neighbors yards, the bird songs were constant all day long.  The birds came in shifts to the options, bird feeders and waterfall.  There were a lot of Starlings, certainly not a favorite.  There were Grackles and Robins and Mourning Doves, an occasional Bluejay, Brown Headed Cowbird.  In front there were sparrows, finches, a Cardinal and more Robins.

There was one bird represented in the back yard that brings back wonderful childhood memories.  Lots of folks are not fans of this bird because it can sometimes be found in huge flocks that can be a little overwhelming.  It is the Redwinged Blackbird.  Often, the color visible on the wing is actually yellow.  Redwinged Blackbirds are often found in swamps, sitting on or among cattails.

I spent some of my happiest times as a child, playing at the swamp a short block from the house.  I can still picture that crystal clear water with the cattails all around, filled with huge water bugs that had what looked like two large oars, one on each side of their bodies, tadpoles, and dragon flies everywhere.  Mom sometimes came down with the willow switch to bring me back home, fearing that I would fall in or hurt myself in some other way.  That did not deter me from my adventures there.  Once I made the mistake of describing the muskrat I saw down there.  Mom and Dad decided it was probably just a regular rat.

The cattails at the swamp were filled with singing Redwinged Blackbirds.  The moment I hear that sound, I am back at the swamp, feeling the wonder and joy and peace that I found there.  I only sctually saw and identified one Redwinged Blackbird in the yard today.  I heard more.  They were there all day long, singing often enough and loudly enough that I could hear them through the constant squeeking of the Starlings.

Late in the day, Mary Ann settled for a while, napped with her face on the little table in front of her.  She would not let me help her move.  During that time I was able to get the driveway and sidewalk shoveled.  Still later, I got the deck shoveled off and spread large quantities of oil type Sunflower seeds on the deck and next to the waterfall in hopes that there will be more visitors tomorrow, coming to eat.

Mary Ann’s three childhood friends arrive from Northern Illinois tomorrow evening.  Tonight as I was helping her into bed and giving her the night time pills, she heard them arriving.  I reminded her that it was tomorrow night that they were coming.  I hope she rests well 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.

 

March 18, 2010

Let There Be Light!

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , |
[2] Comments 

“…and there was light.”  This afternoon twelve feet of light flooded into our little townhome.  It seems as if not only have we added a six foot by nine foot area to our living space, but a deck, waterfall, and back yard filled with trees.  By contrast to the closed in feel of the interior living space in our little townhome, it now feels expansive and open. 

Sometimes it surprises me just how powerful the living, growing outdoors filled with birds and little beasts and thriving greenery can be for me.  I do not share the theology of Avatar, but I share the awe and wonder and respect for the healing influence of the creation. 

On this project, we are using the Design/Build approach.  I think that means something like flying by the seat of our pants as each question/option/decision comes up.  Gratefully, the contractor and carpenters have had very many years of experience doing this sort of project. 

“Would you like the ceiliing raised?  How about a ceiling fan?  If so, what size, color, style of lights?  Is the wall paper staying or going?  How many and where should the outlets go?  Do you want a railing on the short section by the stairs on the south side, a railing on the east side, a railing on the west side, anything on the north side?  How high should the posts be on the east side and what sort of blind will you get for it?  How wide should the steps be?  How wide and thick should the interior support post be?  Where should the switches for the ceiling fan, its light, and the outdoor spots go?  What should be used to transition from cork floor to carpet?  Do you want the sliding glass door to open in the middle or on the side, what side?  What about blinds for all that glass? Verticle? What style? Color? Fabric? Vinyl?

So far it looks even better than I had hoped.  Mary Ann has been skeptical about the project, but when the walls came down today, she seemed to like it very much. 

The noise has been deafening.  We had hung out in the kitchen at the little ice cream table most of the time.  When Mary Ann has been napping in the bedroom, she has seemed completely oblivious to the machine-gun rattle of the drills and pneumatic tools.  At some level, the sounds of construction are music to my ears as the project takes shape.

The last two days have gone pretty well for Mary Ann.  She attended he Tuesday morning group and was fairly alert there.  We ate out at Perkins so that she could have pancakes.  She let me feed them to her.  She consumed about 80% of three buttermilk pancakes and all of two pieces of bacon.  She had eaten a good breakfast and had a couple of cookies at her Bible study.   She ate a small but adequate supper, with a couple of scoops of ice cream to finish it off. 

The Hospice Nurse came by for a while to check in and ask her routine questions about how MA is doing.  She is, of course, interested especially in any changes.  Mary Ann’s blood pressure was high again, 208/100.  It is reassuring just to have someone who listens and writes down what is going on.  It takes a little of the pressure off that sense that I have to be on top of everything and catch problems on my own.  It has seemed a little overwhelming sometimes to feel as if I need to be able to figure out what is going on with Mary Ann and when what is going on warrants an intervention of some sort. 

Stacey came by to show us some more options for verticle blinds to provide privacy with all that glass opening into our living space.  She also brought some more paint samples since Mary Ann had mentioned some ideas for colors to use in repainting the main upstairs interior walls.  I was pretty excited that we came up with what we want to use, and Mary Ann had significant input. 

Last evening Volunteer Patrice spent time with Mary Ann, while I served as an interview Guinea Pig for a Doctoral Student, Gretchen, Daughter of Don and Edie, whom I have mentioned in earlier posts.  That interview was done at PT’s, so I got some time away from the house, and Mary Ann got a break from me.  It is always good to have something different and disengage from the role at home for a while. 

Last night she slept well.  I was grateful, since the time change conbined with late nights writing posts caught up with me, and I headed to bed without writing last night. 

Today has gone very well.  Mary Ann sat in view of the monitor this morning without getting up, so that I could remain with the Spiritual Formation Group downstairs most of the time.

Bath Aide Zandra has struggled with fainting issues interfering with a safe shower experience.  Last Monday, Mary Ann had not yet taken her meds by the time Zandra arrived.  She had no problems with her and enjoyed that she was able to converse with Mary Ann.  For the last couple of weeks, Mary Ann has been very tired and unresponsive as well as fainting often while showering and dressing. 

This morning, I purposely waited and did not give her the morning meds before Zandra came.  Again, she did very well.  Mary Ann did not faint and was conversant with Zandra.  I have been convinced that most often the fainting has come when the morning meds started kicking in.  Many of the meds have the side effect of lowering blood pressure.  This week’s experience seems to confirm that the meds are a triggering element.  I am going to try to remember to hold off on meds until after her shower on those days.  She still has Orthostatic Hypotension, but maybe we can at least minimize the risk of it acting up during her shower. 

Friend and Volunteer Coordinator Mary came by this afternoon to spend time with Mary Ann while I ran some errands related to the remodel project.  She broght some flowers, always very much appreciated by both Mary Ann and me.  Flowers brighten our sometimes stale environment. 

Mary Ann ate a fairly light supper, and then a bit ago she got up from bed to eat a half sandwich.  I hope a full stomach will help her sleep well.  There are, of coruse no guarantees about that.  We have some company from Kansas City tomorrow, a visit we are both very much looking forward to.  We have been friends with the crew that is coming for more than 35 years.

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 8, 2010

Mary Ann is Now in Hospice Care

Posted by PeterT under Daily Challenges, Family, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , |
1 Comment 

What that means is that we have someone to call whatever comes up.  A Hospice Nurse will stop by a couple of times a week.  We have added one day a week of having an Aide to help with shower and hair.  Mary Ann loves current Bath Aide Zandra, so we will continue to use that paid service.  All the Hospice costs are covered by Medicare.

The Hospice Nurse who enrolled Mary Ann today was already helpful.  Mary Ann declined so much in the last few days since we took her off one med (Amantadine), that I thought we should start it again.  Because these are powerful meds, I didn’t want to do it without professional advice.  This is Sunday.  Nurse Jennifer contacted the Hospice Pharmacist and confirmed that it was all right to restart the med.  The most obvious change was the clubbing of Mary Ann’s hands, rendering them useless — in four days.  We are all hoping that her hands will return to functionality when the med reaches the therapeutic level in her bloodstream.  There are no guarantees that she will regain what she lost.

Mary Ann was a little more responsive this afternoon.  She was up while the Hospice Nurse was here, and she responded appropriately a few times.  She has been sleeping much of the day, but up for breakfast and to get dressed, as well as an hour or two after the Hospice Nurse left.  She was actually lying with her head down and her eyes closed, but at least she was out of the bedroom.  She ate lunch, the usual half sandwich, chips and a Pepsi, followed by a good-sized bowl of Buttered Pecan ice cream.  As hard as it is to hold her head up and feed her at the same time, I am cherishing every moment we have together.

She has not yet eaten supper.  I have been going in to talk with her every half hour or so to see if she is hungry or wants to use the bathroom.  She finally got up to eat at about 8pm.  She ate a substantial supper capped off with a small Boost and ice cream shake.  The Boost should help assure adequate nouishment.

As the evening has worn on, it is beginning to appear that the Amantidine is a very problematic medication.  She is now very alert, unable to sleep, doing some hallucinating, and when she was in bed complaining that she couldn’t move.  She is up and in the living room watching television, sitting up and it is 11:15pm.  There is no sign she is slowing down — I take that back.  She just decided to lie down in bed.  I don’t know how long that will last, but she has been sleeping most of the time for almost five days, so I guess it would be no surprise if she is up many times tonight.

It is tiring be be jerked around so much of the time by medications that wreak havoc with her functionality.  Sometimes they work, sometimes they don’t.  Sometimes they do exactly the opposite of what they are supposed to do.  Then in an hour or a day or a week, they start doing what they are supposed to do — or not.  I will wait to see if her hands open and resume usefulness.  If they don’t, I will talk with the doctor again about the possibility of removing it.  When looking at side effects, Amantidine’s list contains very many of Mary Ann’s problems.  Stopping it seemed to result in the clawed hands and weakness that does not allow her even to assist in a transfer, let alone walk, even with assistance.  Today after restarting the Amantadine this afternoon, it has seemed to produce more strength and alertness, sort of bringing her back to life.  Of course I can’t be sure the medicine is causing all the changes.  It is just that the changes seem to associate directly with the times we stopped and then started again the Amantadine.

Even the professionals, Doctors and Pharmacists can’t help very much since people don’t always react in the same way to the same medication.

On the positive side of taking the Amantadine, if it helps with her alertness and ability to communicate, that will be a very good thing in the next few weeks.  Some of Mary Ann’s friends and family intend to come and visit.  They would appreciate being able to interact meaningfully with her.

Some readers have asked about the time at the Retreat Center — how it went.  I have already written about the two evenings.  The day Friday was wonderful.  It was 70 degrees and full sun all day long.  Thursday night, when heading out to watch the sun set, I was spotted by a deer, who headed over to be with ten more deer.  I watched them for a long time.

During the day on Friday, I walked at a leisurely pace along the path that wanders back and forth through a large wooded area.  The moss on the path was in its new spring shade of green.  The trees were budded out ready to burst open with flowers for leaves.  There were birds to be enjoyed. There were some I couldn’t identify (not unusual).  Even though they are common, the Red-Bellied Woodpecker that doesn’t have a red belly, and the Yellow-Rumped Warbler, that does have a yellow rump are just fun to call by name.

I did see something out of the ordinary.  It is what one of the staff there has dubbed the Mutant Armadillo.  It is certainly an Armadillo, but the largest one I have ever seen, dead or alive.  I suspect it would take five or more of the ones that are routinely spotted on the side of the road with their feet in the ari to match the weight and size of the monster I saw.

I sat for a long time on the three legged stool in the fartthest corner of the property I could reach.  I read Psalm 104, a great description of the creation and all that’s in it.  Then I read the a few chapters in the book probing the implications of physics in regard to the presence of God.  It was a good grounding for me as we ride the roller coaster we are on here at home. I did take a moment to phone home from that place.  I have done that on the last few retreats.  It helps me keep the world of prayer and meditation connected to the day to day reality.

I continue to be overwhelmed by the words of support through the electronic media.  There is no chance to feel isolated and alone when so many are thinking of us and praying for us.  Thank you all for 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.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

March 7, 2010

Decision is Made

Posted by PeterT under Daily Challenges, Family, Help from Others, Information on Parkinson's, Meaningful Caregiving, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , |
[7] Comments 

I am phoning the Hospice folks tomorrow (Sunday) to begin the application process for Hospice.  When we asked in a way that she could respond yes or no, Mary Ann said yes.  The kids both agree wholeheartedly.  I have grieved my way through to agreeing.

It seems none too soon.  I can’t believe how much Mary Ann appears to have declined in just the last three or four days.  She slept through the entire time I was gone, either in bed or in her chair with her head down.  She had been sleeping like that before I left.  She is seldom responsive, but can on occasion be lucid for a while. All of a sudden in the last three days, her hands have swollen and are stuck in a clench, which could become hand contractures, something our daughter saw often in the nursing home context.

Mary Ann was at the table with us during the entire conversation about Hospice, and the decision about the possibility of a Do Not Resuscitate order.  She had her head down but her eyes open.  The kids were sitting closest to her and I was across from her.  We worked hard to get responses from her at various times.  I explained that acceptance by Hospice would imply that we are on about a six month trajectory.  I added that if she was doing better she could “graduate” from Hospice for a time.  She responded in a way that seemed to indicate she was tracking with what I was saying.  She said a distinct yes, for all three of us to hear.

What is most comforting to me and, I am sure, to Mary Ann is that should she qualify for Hospice Care, she will be able to stay at home to the very end.  We both dread hospital stays so much; that alone was enough to seal the deal.  Of course, there still could be need for hospital care, but since Hospice can administer IV’s at home, it is far less likely there will be any need to do so.

I talked about the DNR option.  After explaining it and the reasoning for it, I asked her first thoughts on it.  Again she said, yes.  I told her that I would check back with her another time to be sure.

Since, a decade or two ago, Mary Ann already had tearfully wished she had gotten something she could die from rather than the long protracted decline of a disease like Parkinson’s, the DNR did not bring resistance but agreement.

Speaking of tears!  I have encouraged people, men and women alike, to celebrate the ability to cry as a powerful gift from God.  I have told people that it is a sign of strength and not of weakness.  At the same time I was proud of myself that in my adult life I could count on one hand the times I had cried out loud, sort of denying my own counsel.  Well, I am now, a few weeks short of my 67th birthday, giving up counting.

Last night in the cabin at the retreat center in Oklahoma, I could no longer hold it in.  I have ministered to people for forty years.  I have watched die and done funerals for people that I genuinely cared about.  I refused to become clinical and treat funerals and the people grieving at them as just a part of a job.  I risked becoming vulnerable enough to care about them.  I buried babies, and teenagers and young adults, parent of young children, people of all ages and circumstance.  I felt the pain and cared about how they were feeling.  I ministered to people and preached at the funerals and never broke down (except once in an inconspicuous moment after preaching at the funeral of one of my best friends).  I cannot describe to you just how different it is to think about watching Mary Ann go through what I have seen far too many times in these forty years.

I want this process to stop right now.  I am not willing to lose her — but I can’t do a damn thing about it!  There is no where to which to run to get away from it.  I have a very ugly and very loud cry.  I guess not having practiced it more, I never really learned how to do it well.  I warned the kids tonight and asked them to explain to their children that they might see their Grandpa crying out loud, but not to be afraid.  I wanted them to know that it is all right, even healthy to cry, to let their emotions show.

I spent the evening the night before last talking with friend John.  I just spewed it all out, the good, the bad and the ugly.  I can trust John with the worst of it.  He can listen without judgment and never give advice.  He had gone through a shorter version of this when his wife died of Cancer — shorter, but no less devastating.  He had some very tough challenges as a single parent immediately after Sherrie’s death.  I shared a struggle with anger toward someone in Mary Ann’s closest circle who hurt her deeply.  That evening, that person and that deed’s power to turn me into someone I don’t like was lifted from my shoulders, better said, my gut.

So much is happening so fast.  This is all I will write for now.  More will follow.

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 4, 2010

Hospice Report — Lisa’s Here — Construction Begins

Posted by PeterT under Daily Challenges, Family, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , |
[3] Comments 

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: , , , , , , , , , , , , , , , , , , |
Leave a Comment 

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 1, 2010

A Great Day!

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , |
Leave a Comment 

What a ride!  Mary Ann was ready to get up at 7:15am today.  This time I did not ask her to stay in bed until the alarm was due to go off at 7:45am.  She had been sleeping for 36hours straight.  I decided I did not want to risk her falling asleep again for a number of hours.

I got her dressed right away; then washed her hair. She took pills and ate a good breakfast.  She let me feed her.  She did not seem to be hallucinating at all.  She was very lucid.  There was a some fainting, so after checking her blood pressure, I gave her a half tablet of Midodrine to help keep her blood pressure up.

Volunteer Elaine came to stay with Mary Ann this morning while I had my usual Sunday morning quiet time at the lake.  Elaine engaged her in conversation.  At some point while I was gone, she began reading to her, which Elaine was doing when I returned.  Mary Ann was leaning forward some, but Elaine just moved her back up regularly.  As a result, Mary Ann was awake all morning.

Mary Ann picked scrambled eggs and bacon from the options I gave her for lunch.  She ate every speck of it on her own.  By the time she was done with the small amount of Baskin & Robbins ice cream that was left from a few days ago, Volunteer Jan arrived.

This is the first of the monthly Beginning Birders’ field trips I have been able to make.  While I did not get a detailed report from Jan about how things went, Mary Ann was awake when I left and awake when I returned.  As far as I know they had some good quality time.

Jan brought food to heat for supper.  Since Mary Ann had been up all day, we decided to stay home rather than go to the Evening Service.  That way I was able to prepare what Jan had brought.  Again tonight, Mary Ann let me feed her supper.  She ate a full serving and followed it with one of two scoops of Baskin & Robbins ice cream that I had gotten for her two days ago.

You can do the math.  She ate three full meals today.  She also had part of an apple as a snack when Jan was here, and a snack of some coffee cake with Elaine just after I left for the lake.  Her body must be in shock from all the food!

If a person only had today as a reference point for Mary Ann’s health, they might wonder what all the fuss is about.  My gut has been yanked from one extreme to the other in a matter of hours.  I guess that is nothing new.  I felt good today also, knowing she was doing well.

There is a certain level at which there is frustration that today seems to make yesterday’s grieving a meaningless waste of time.   I remain convinced that feeling the feelings when they come is better than burying them, in case things might change.  In our situation, they will change.  The grieving I did yesterday still counts.  I know where this is going.  I probably know too much having read emails written by folks in the throes of the worst this dementia has to offer.  I know too much from forty years of ministering to people going through terrible times of pain and loss.

Yesterday provided some preparation that needed to be done.  There will be more that needs to be done as we move to new and still more difficult stages of the disease process.  Having gone through the reality therapy yesterday, having grieved more the anticipated losses, today is all the sweeter.  She got to have today.  I got to have today.

This morning’s time at the lake offered great entertainment in all the displays by the birds.  I read a very meaningful devotional piece in the Spirituality Journal called Weavings.  The sky was crystal clear and the air crisp.  All of it combined to lift my spirits.

There were American Bald Eagles to watch again.  I saw a drama unfold, as a juvenile Eagle spotted a Canada Goose with a broken wing, walking across a road less than a hundred feet from me.  The drama happened about 150 feet away.  The Canada Goose managed to ward off the Eagle as he tried to make lunch of the goose.  While the goose did not have the weapons the eagle had (talons and powerful beak) the goose was bigger and heavier.  Later I watched from fairly close range two Red-Tailed hawks fighting over a kill.

Then there were the White Pelicans.  They are huge and have a magnificent wing span.  Their wingspan can exceed nine feet, much larger than an eagle.  One Pelican circled around and around until it was almost overhead.  They are blindingly white (especially in this morning’s sun) with contrasting black on part of their wings.  It was quite a sight. There were a variety of waterfowl coming an going.  It was quite a treat.

This afternoon, the time with the birders at a different lake was another treat.  I learned more about identifying a few birds and enjoyed talking with other folks with like interests.  We spotted an eagle, some Mergansers, Redheads, Ring-necks and Golden Eye water birds – along with the ubiquitous Canada Geese, American Coots, Mallards and Ring-Billed gulls.

After such a good day, I must add that I just went in to check on Mary Ann.  The hallucinations have started again.  She agreed to manage a treasury of come sort and was afraid she had messed it up.  So much of the time there is nothing I can think of that even remotely connects with the hallucination or dream.  Then she fainted two or three times as we tried to get to and from the commode.  I will take her blood pressure in the morning to see if some Midodrine seems warranted.

I think I am going to get whiplash!

Tomorrow is the appointment with the Neurologist.  The report will be in tomorrow night’s post.  I am anxious to see how the appointment 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 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: , , , , , , , , , , , , , , , , , , , , , |
Leave a Comment 

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

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , , , , , , , , |
Leave a Comment 

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

Posted by PeterT under Daily Challenges, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , |
Leave a Comment 

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.

 

« Previous Page — Next Page »