The Caregiver Calling

She is sleeping; I am thinking about Hospice.

She has been sleeping for 24hours other than about an hour doing food and pills this morning (about 11:30am) and one trip to the bathroom this afternoon.  I wake her enough to give her the 1/2 Sinamet every two hours.  That pill is for keeping mobility.  While she hardly needs mobility when sleeping, without the Sinamet, she stiffens up and becomes very uncomfortable.

I have now found something that I can cook for Mary Ann that she seems to like very much.  I do a very skillful job, and the result, I must admit is very tasty.  I get a slice of bread out of the package, toast it to perfection, butter the toast from corner to corner, slather on some super-chunk chunky peanut butter and top it with some of Maureen’s homemade preserves.  I cut it into quarters and hope I don’t get my fingers bitten as I help her eat it.

She had juice, a container of yogurt, the PBJ on toast, and that is all in the last 24 hours.   So far I have not been able to get her to get up even for a commode trip, let alone some supper.  It may happen yet.  It is 8pm at the moment.

It just popped into my mind that this is sort of like riding some sort of tilt-a-whirl.  I almost go crazy with the hallucinations, praying that she will take a nap, and my heart sinks when she sleeps so long, fearing that she is not going to get up.  We have been on this ride long enough, that I don’t lose my bearings as we swing one way and then the other, but I have to tell you it sure isn’t as much fun as riding the tilt-a-whirl (not that I can remember riding one — I probably would have thrown up — I was mostly a roller coaster guy in my younger years).

While she has been sleeping, I have been thinking, or maybe it would be more accurate to say, feeling.  So many times in my ministry I have tried to help people deal with hearing the word “Cancer” in a diagnosis.  Minds immediately fly to the worst case scenerio for how things will go.  While that may be the way things go, the word “Cancer” spoken as a diagnosis does not determine an outcome.  It has implications for outcomes, but ask any Cancer survivor about some of those possible outcomes.

Well, the word “Hospice” carries with it for me the weght of many visits to people in our local Hospice House, whose stay most often varies from hours to days, and then they are gone.  I have ministered to people for forty years with most of those entering a hospice program reaching the end of their lives not long thereafter.  While I realize intellectually that there are folks who have been enrolled in hospice programs for years, my gut has no clue about that.

In addition to the gut reaction, there is the harsh reality that Mary Ann has been declining at what seems like breakneck speed.  She has bounced back from so many medical problems that would have taken someone with less strength of will, part of me is just waiting for her to rally, as usual.

This time she seems to be moving past the point of being able to return to the level of functionality we enjoyed just a few months ago.  I will happily eat those words if a week from now she is her old feisty self.

Today, as I had time to immerse myself in the implications of “Hospice,” I did what I usually do, what I think should be done, I felt the feelings that come with the potential loss.  I grieved.  I have been down this road before, more than once.  The memory that surfaced today was the memory of sitting in an empty emergency room about four years ago at a hospital in Tucson, Arizona, while Mary Ann was somewhere else in the hospital receiving a test of some sort.

We had flown to Tucson to attend a gathering of Lutheran Seniors at a large retreat center there.  On the plane trip down, Mary Ann began having some congestion, I am convinced due to the poor air quality in the airplane.  As the days went by, it got worse until we decided to call an ambulance.  I remember looking back from the passenger seat of the ambulance to see the one EMT in the back trying to deal with Mary Ann’s arms and legs flying this way and that, because of the dyskinetic movements produced by the Parkinson’s meds.

As I sat in that empty emergency room, a thousand miles away from anyone I knew, any family, the doctor and nurse had just left.  The doctor told me that the X-ray had shown her lungs to be completely white.  She would most likely be on a ventilator by morning.  I asked if it was time to phone the kids to get them to come, implying, of course that otherwise they would not see her before she died.  The answer was, of course, yes.  I called them.  They each got on a plane and came, Lisa bringing a little one with her.

I had what seems like an eternity in that room, sitting by myself.  The feelings were powerful, the moment surreal.  Today, I remembered what it felt like to think about losing Mary Ann.  I have written at least one post almost a year ago that included a desrciption of some time thinking about her eventual departure.  While a few hours from now Mary Ann may be irritating the Hell out of me getting up and down and up and down (which at this point I think I would celebrate), it seems very possible that we are approaching the beginning of the end.

I need to tell you that my heart is aching as I am writing those words.  I don’t mean to sound dramatic.  I will be fine.  I am just describing feelings as I am experiencing them.  This is what it means to be alive!  Mary Ann is still alive and may be for a long time.  If she is not, if I am not, it is still all right.  We are secure beyond our time here.

She just got up to use the bathroom and get a drink of water.  She was not hungry and is in bed again.  It is about 9pm.  She was lucid and did not seem to be hallucinating.

After a while, I put on the CD by Lisa Kelly, one of the Celtic Woman group.  As I listened to it again, most of what is on it is relevant for someone thinking about a life’s partner, as well as the need to let go and the challenges associated with doing so.  In the song “May It Be” there is a refrain, “a promise lives within you now.”  As I listened to music that resonated with my feelings, I thought about how trite and shallow and sentimental music can be when it seeks to manipulate the feelings of listeners.  I realized that what makes such music meaningful is only real life, lived with all the struggles and mundane tasks adding depth to what could be shallow and meaningless.

Let me say it this way.  With all my self-doubt and lack of confidence, painful flaws and weaknesses, guilt feelings about all that I have not done that I should, especially in showing Mary Ann and my Children how much I love them — with all of that said, I am keeping my promise to Mary Ann.  That promise lives within me now and it is not just a feeling. It is being lived hour by hour and day by day.  I hope at some level Mary Ann feels secure in that promise.

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.

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.

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.

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.

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.

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.

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.

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.

I have asked her three times with fairly long intervalsin between to let me help her in some way.  She chose the chicken salad for lunch, along with the usual Pepsi and Fritos.  She just could not negotiate the fork.  She was putting the handle in her mouth. When I offered to help she said that she needed to do it for herself.

I got from the fridge the other half of a sandwich she had eaten on Monday.  I microwaved it just to warm it a bit and soften the cheese.  I put that on her plate with the chips and chicken salad in hopes that she might use her hands to eat it since the fork wasn’t doing well.

It was probably fifteen minutes of her getting nothing into her mouth, even the Pepsi, (she had also refused to let me get that to her mouth so that she could get some through the straw) before I offered again.  She still refused.

Just before eating I weighed her.  She had gotten as high as 135 pounds a couple of years or so ago — then 125.  More recently she has been under 120.  The last time I weighed her here is was 117.  This time it was 113.  She needs to eat!!!

When I came back to start this post, she was beginning to get some of the sandwich eaten, using the fork to pick it up.  I just went back to check again, and the Sinamet must have kicked in since she is now getting some of the chicken salad to her mouth.  That is a very good thing.

While, of course, I love ice cream and will find any excuse to head to Baskin & Robbins to get some, I also do so to get as many calories as possible into Mary Ann.  While she may run out of patience trying to eat chicken salad and a deli meat sandwich, she will manage to get ice cream eaten, even if it demands letting me help.

She ended up eating about four bites of all the food on her plate.  She did let me feed her a raisin cookie I brought home from the coffee shop for her yesterday.

It is very difficult to watch Mary Ann try to eat on her own when things are not going well.  One reason she was having so much trouble this afternoon is that her eyes were shut for most of the time she was trying to eat.  She was in eyes slammed shut mode, along with the return of hallucinations.

Last night did turn out to be one that included a number of times up.  Shortly after going to bed she had another divorce dream.  When I came in to check on her, she was sort of surprised to see me.  Hopefully, the fact that I am with her 24/7, those dreams will begin to subside.  She is fine when she is not in hallucination mode.  In fact, last night, she did say it was a nightmare she had had.  At least she seemed very quickly to be aware that it was not real when I sat down next to her.

She got up early this morning given how often we had been up during the night (her usual pattern on those nights).  It was not long after breakfast that she needed to lie down again.  She slept until about 2pm.  That is when we began the lunch process that went so badly.

She sat for a while after lunch, some of the time in her head in her lap position. After a while, around 4:15pm, she just got up and headed into the bedroom (I caught up with her quickly and let her lead us to where she was going).  She wanted to change her jeans for pajama bottoms.

After that change, I offered her some vanilla ice cream from the freezer.  She let me help her with a good sized bowl  Shortly thereafter she went in to lie down and watch television.  She was very restless for a while, with lots of hallucinations, this time interspersed with moments of lucidity.

It is 9pm.  She has had her pills and has been fairly quiet for a while.  I would not presume to predict how the night will go.

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.

Facebook is an interesting tool, even for Geezers like me.  Not too long ago we connected with someone our age who went to the same church Mary Ann and I attended.  It is where Mary Ann and I met.  Actually, Mary Ann and I had grown up together in that church.  It was a large enough congregation that we only knew each other’s names since both families were very active in the church. We didn’t really get to know each other personally until the summer after my first year in college.

Judy was a member there.  Her family was also one of the mainstays in the congregation. She knew both Mary Ann and me before we were a couple.  It is through Facebook that Judy and Mary Ann and I connected after some fifty years.  Judy now lives in a small town in Wisconsin.  She is in a leadership position in her parish there.  That parish has a Prayer Shawl ministry.

As Judy has read this blog, she has become very aware of the challenges we face day by day.  She decided to include Mary Ann in prayer as she worked on the shawl.  She sent us pictures of possible choices for the yarn, and Mary Ann picked out her favorite.  Today the package came.  Mary Ann had the shawl around her shoulders this afternoon and evening after I got it from the mailbox.  It is very beautiful, even matching some of the colors in the house.

I should mention that Judy also sent a treat for me.  Having read the blog posts about the newly opened Baskin & Robbins near us, and my Facebook urging that all the local people head over to get ice cream there and announce that Pastor Pete sent them, she knew that B&R gift certificates would be a very appropriate treat — for both Mary Ann and me.

Gratefully, Mary Ann had a pretty good night again last night. She was up for a while today, mostly in the sitting with her head in her lap position.  Friend Jeanne came over to spend the afternoon with Mary Ann.  Unfortunately, Mary Ann ended up folding and going to bed for a nap shortly before Jeanne arrived.

Jeanne stayed for the afternoon while I picked up coffee to go over and visit John who is recuperating from a back surgery, not yet able to get out much.  It was nice to have a couple of hours free to spend just talking about nothing in particular.  John has great stories from lots of interesting work experiences.

When I returned, Mary Ann had slept through Jeanne’s visit entirely.  I was able to get Mary Ann up for a while as Jeanne waited for her ride.  They did get a few minutes of visiting.

Mary Ann ate a reasonable amount for supper.  She stayed up for a while and ended up in bed at about 8pm.  Since she slept a number of hours during the day and didn’t get up until after 4pm, I am again expecting a difficult night.  I expected such a night last night, but it did not materialize.

You know that feeling when coming up to a traffic light that has been green for a very long time (I think called a stale green light), the feeling that the light is going to change just before you get there?  That is the feeling I have about the the good nights and reasonably good days we have had for a while now.  I am expecting the light to change any moment and the intense hallucinations to return.

The good thing is that I have been trying to get to bed earlier each night in anticipation of having a long and difficult night, hoping to squeeze in some sleep before, in between and after the bouts of dealing with the hallucinations.

I just went to check on her.  I think the light is at least turning yellow.  She said she was having dreams about the people again.  The journey goes on.

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.