The Caregiver Calling

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.

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Now that Mary Ann is enrolled in a Hospice program, there is certainly a vivid awareness of death.  What exactly does that mean about what it is to be alive?  Is Mary Ann as alive as she was before she was enrolled in Hospice?  I will soon be 67 years old.  Statistically, I am closer to death than when I was 27.  Am I less alive now than I was then?

Marilyn, a Lead Staff member at the church I served as Senior Pastor for a dozen or so years has asked me to consider doing a presentation some time on funeral preparation and things that are associated with the process of dealing with a death in the days after it happens.

After forty years in the ministry, I have been through death with numbers of people.  In my job, I simply could not avoid thinking about and talking about death.  I remember when working on my doctorate, for a class on ministering to the older population (of which I am now a proud member), interviewing my Mother, who was in her seventies at the time (sounds young to me now).  I asked what she thought about death.  She said it is just a part of life.  It had been for her, having lost her first two children, one as an infant and the next as at the age of five.  People lay in state at home in the early years (she was born in 1907).

On occasion, when I had a cluster of funerals very close to one another (happened surprisingly often), I would wonder if I ought to find something to do that did not involve being immersed regularly in peoples’ lives at a time of such loss. I am convinced that the truth of the matter is unless and until we come to terms with death, with ours and others’ mortality, we can’t really live life to the full.

Fear of death seems to me to steal the joy from life.  Fear of dying is another thing entirely.  That fear is pretty rational.  None of us longs to have a long protracted process of dying.  Death is just the period at the end of the sentence that is the story of a person’s life.  Every day we are writing that story.  Accepting the reality of death frees us to give our full attention to the story we are writing each day, from the time we wake up to the time we go to sleep.

Making plans for the time when we die is just a normal task each of us needs to do, assuming we care at all about those who will be left behind. There is a peace and freedom that comes when all that is in order.  Today, Hospice Nurse Emily mentioned that her very healthy 87 year old Grandpa asked the Grandkids to go around his place and put their names on things for the time when he was gone.  At first the kids were reluctant, but he insisted.  For him it was comforting to know where his things would go.

The process of funeral preparation can be very life affirming.  While I do not recommend writing your own obituary with the expectation that it is the one that will be published, the exercise itself can be life changing.  Who do you want to have been when the period at the end of the sentence comes?  How do you want the story of your life to read?  Once you have gone through that exercise, it is time to actually do something to make that story a reality.

Mary Ann and I are no more or less alive than we were a month ago, a year ago, a decade ago, a half century ago.  Hospice or not, we are both alive.  There are limits on what we can do now as we continue to write the story of our lives, but there are limits of one sort or another on everyone.  The limits are not so confining as they are simply the setting for the story.  We write the story of our lives using the resources we have, not resources we used to have or wish we had, but the resources we have, thereby avoiding wasting time lamenting that we don’t have.

Mary Ann had a reasonably good day today.  It started with some fainting, but we got through that.  There was more conversation about dreams that seemed real to her.  Later in the morning Hospice Aide Sonya came to do Mary Ann’s shower, etc.  After a pretty full lunch, Nurse Emily came.  Again, it is good to have someone to report to and lean on when trying to determine how Mary Ann is doing medically.   I am happy to report that Mary Ann has gained back a couple of pounds, now at 114.5.

Former parishioners came by for a visit.  Randy and his Mom Leota came by for a while.  She is also suffering from some form of dementia, so her memory is not good.  Her husband was an avid fisherman, whose catch she would sometimes cook for us and call us to come and pick it up.  I did the funerals for one of their adult children, and her husband, as well as a couple of his fishing buddies.

Mary Ann ate a decent amount for supper and is now trying to settle down for the night.  The snow is falling at a rapid rate.  The first day of Spring tomorrow may include as  much as a foot of snow.

Since I seem unable to keep my eyes open, I think I will bring this to a close and head to be.  Here is hoping for a sleep-filled night.

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By the time they arrived she was a little more subdued.  When she got up this morning, she was her feisty self, the one I have known for almost 48 years, smart-ass comments and all (excuse my French as we used to say — no offense intended to those of French ancestry).  There was laughter wound into the interactions.  It was a good morning.

In the course of our interactions, she asked me to tell her about what went on last weekend.  I asked for more help in determining what she was referring to, since I couldn’t remember what went on last weekend.  I thought maybe she was referring to the trip to Oklahoma a couple of weeks ago.  She said that maybe it was just a fantasy, but she recalled events including (again) my wedding to Lulu, this time including some sort of Evangelist and someone stopping the wedding just in time.

I reiterated that I refuse to marry someone named Lulu and she is not going to get rid of me by palming me off on some other woman.  She is stuck with me to the bitter end, mine or hers.  This time she did not seem upset about what she was remembering.  She seemed to understand that it was not real. The conversation was clear and rational, if the content was not.

After such a good hour or two, she needed to use the bathroom.  She fainted three times during our stay there.  Each time we got up for me to do my part in the task, she fainted again.  They were not just momentary lapses but substantial ones.  After that series of episodes, she was very tired and her eyes slammed shut.  If no company was coming, she would probably have gone to bed for a couple of hours or more.

Since company was coming, I did not offer and she did not ask to lie down.  When the crew from Kansas City arrived, she was able to rally to a level of alertness that allowed good interaction for a number of hours as we talked, ate out, drove around a bit and returned home.

When we ate out, she fed herself the sandwich.  Yesterday, she had fed herself some of the time.  When the huge cup of ice cream came after lunch, she insisted on trying to eat it herself.  She often turns the spoon upside down when eating.  It is hard to watch without trying to turn it right side up, but when she is in her determined mood, she refuses to change that pattern.  Finally, after I asked her quietly if she would let me help, she agreed.  At that point she had been working a long time without getting much ice cream into her mouth.  As has happened before, the love of ice cream trumped the pride standing in the say of getting it into her mouth.  It does seem to me that she is regaining a little of her ability to feed herself.

What we did was quite secondary to doing it with folks with whom we have a long history, folks with whom we can be ourselves.  They are folks who have come to be almost extended family.  They are all University of Missouri grads and have little use for the Kansas teams.  None of us is perfect.

In the crew of eight of us there have been struggles of all sorts.  We each have stories to tell.  One in the group has had a chronic form of ALS that was diagnosed maybe eight or so years ago (not sure of the exact timing), long after symptoms of something had been apparent. She, her husband were not able to come since she broke her knee cap and is finishing up a long rehab.  The wife of one who came could not travel yet after a painful test for a problem yet to be diagnosed.

Mary Ann slept on the couch for a couple of hours after they left.  She just did not want to go in the bedroom to nap.  I am inferring from her reluctance to nap in the bedroom lately that she feels if she is in the living room or kitchen, the napping will not be as long.  She will not lose as much of the day.  She will still be in the heart of activity, even if dozing.

The project is continuing to progress.  The sheet rock is up and the first coat of mud is almost complete. It will need to cure until Monday, when Mary Ann’s friends from Junior High years on will be visiting from Northern Illinois.  That is, of course, when the sanding will begin.  The girls and Mary Ann may need to spend time in the lobby sitting area of the hotel to avoid flying plaster dust.  It will be nice to have an alternative place to spend time. After having the view through the sun room glass (even though still covered with cloudy plastic sheets) for a day and a half now, I cannot even imagine the house without it.

After getting up from her nap, Mary Ann was not hungry and would not eat any supper. After I started eating some leftovers, she did eat a few chips and a cookie.  I have little doubt there will be a need for food some time during the night.

While there is no clear reason for Mary Ann to have been doing so much better the last few days, we will take it and simply celebrate.  We have certainly had more than our share of bad days and there will be more to come.  As always, they will come one at a time.  We will deal with each when it arrives.

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“…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.

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She liked it!  She actually liked it.  Those of you who have been reading this blog for a while know that I struggle to provide tasty meals for Mary Ann.  I will eat almost anything (except Okra, Oklahoma friends may remember).  Mary Ann, however has a discriminating palate.  That is a classy way of saying she is an annoyingly picky eater! She has been a phenomenal cook when she still used the kitchen.

I can hardly claim the high road here.  I am a hopelessly unskilled and lazy cook.  Give me a four gallon pot and a refrigerator of odds and ends, a few cans of beans and tomatoes and I can make a pot of soup that is nourishing and filling, if not tasty.  I am pretty much the only person who will eat the soup that I make.

People keep telling me that all I need to do is follow a recipe.  They forget to mention that there need to be ingredients purchased, seasonings on hand and enough experience to understand what the heck the recipes mean.  They tend to leave out instructions for things “everybody” knows how to do.  Then there is the issue of getting things for the meal all done at the same time, so there aren’t cold mashed potatoes with a hot roast.

Anyway, she liked it.  She had wanted a pork roast.  She usually doesn’t suggest meals, especially now that words are very few.  She picked out the roast. at the store.  Of course the choices did nto include a pork roast like the ones we used to have, the ones with the bone, lots of fat, and the tenderloin still attached.

I browned the roast in a pan with some olive oil.  Then put it in a large rectangular glass baking dish.  I surrounded it with large hunks of cut onions, red potatoes cut in half, and a half cabbage cut into quarters.  I put salt on all of it since so many veggies would need it.  I sprinkled a little garlic powder on all of it.  I covered the roast with dried thyme.  I deglazed the browning pan with some beef broth.  (Are you impressed yet – “deglazed” — am I cool or what?)  Then I poured that over everyihing, added a little more olive oil on top of the veggies and cooked the heck out of in the oven for a couple of hours.

It was good!!!  She liked it. I liked it.

We also had a windfall.  Don and Edie brought over a meal from the Baptism dinner.  Today, Shari who stayed with Mary Ann this evening brought over tonight’s supper.

Gratefully, our Daughter, Lisa, has made a number of items for the freezer that I only have to thaw and heat.  What a blessing.  She did that while she was here with Mary Ann when I headed to Oklahoma for the three day retreat.

There are lots of people who find themselves in the position of lacking certain skill sets to fulfill all the needs that emerge because of the circumstances that they are in.  When a household has a couple of adults and some children in it, the tasks get either divided or shared, depending on the skills each adult has.  Even in households with two or more adults, there still may not be some skills needed to sustain the household.  In that case, the people in the household earn money to pay someone who does have the skill set that is missing.  Plumbers and electricians come to mind as those who might be paid (now or later, if an unskilled household member tries to fix whatever it is).

People whose life circumstances change may find themselves lacking needed skill sets.  It happens when there has been a divorce.  It happens when a spouse dies.  It happens when  a key member of the household becoms disabled.  It comes with the territory for anyone who happens to be the only one living in the household.

There is inside maintenance, outside maintenance, accounting and money management, automobile maintenance (what and when and whom do you trust).  I am sure you could add lots to that list.  For Caregivers, the task is often complicated by the sheer wieght of dealing with all the personal needs of someone else as well as his/her own.

I have to admt that in my case, many of the missing skill sets are not ones that couldn’t be gained with a little effort.  Therein lies the rub.  Effort is in short supply.  Yes, a lot of it is just laziness.  I have not always been adventurous in learning how to do new things.  I am a procrastinator, and as a reault, I often just don’t get the learning process started on a new skill in time to do what needs to be done.

The skills that are necessary to full time caregiving include food preparation (unfortunately — especially for Mary Ann), managing a household, managing finances, good decison-making (lots to be made on your own), medical diagnosis, communicating effectively with medical professionals (both listening and talking), basic CNA skills in assisting in toileting, showering, dressing, feeding, washing hair, basic household duties such as washing clothes, making beds, cleaing the bedside commode, cleaning up after meals.  Those of you who are Caregivers can, I am sure, add at least as many more tasks that come with the territory.

So, as do each of us who have total responsibility for keeping a household functioning, I do what I can do, find others to do the things that I am currently not equipped to do well, and ignore the rest.  Just don’t look to carefully if you come to visit.

Actually, I have decided only to have very low maintenance pets in the house to keep us company.  At the moment, we have only Dust Bunnies as pets.

Today went reasonably well for Mary Ann, but there was a lot of sleeping, in spite of very loud sawing and banging on the outside walls soon to be removed.  I hope she sleeps 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.

No, I have not gone over the edge, relying on Dr. House for diagnostic input.  First of all, the character, Dr. House, is extremely annoying, especially to those of us who have encountered arrogant doctors.  Gratefully, other than one Hospitalist, we have been spared that problem in recent years.

Mary Ann loves watching the series, “House.”  We have seen the episodes so many times it is hard to stay in the room when they are on.  There was one yesterday that was far too close to home.  It was one that I don’t remember seeing before.  A character named Amber has been in a bus accident and ultimately dies at the end of the program.  She has died of Amantadine poisoning.

Amantadine is the drug we discontinued a couple of weeks ago and restarted about a week ago.  One reason I was reluctant to restart the Amantidine was a series of warnings to doctors about it in the info sheet that comes with it.  Amantidine is retained in the plasma (I believe) especially if kidney function is compromised.  Mary Ann’s kidney function is significantly reduced due to all the years of high blood pressure.  One warning to the doctor’s was that in elderly patients it is metabolized differently and needs to be reduced so as not to build up.  Mary Ann qualifies since her Body Mass Index has declined so much.

In the program, Amber died of Amantidine poisoning because her kidneys had been damaged in the accident.  Her body could not flush it out.  She was taking it for the flu.  The brand name of Amantidine is Symmetrel, a drug often prescribed to people with the flu to reduce its impact.

No, I am not concerned.  She has been taking it for years.  Yes, when I fax the Neurologist to get in Mary Ann’s chart that she has resumed the Amantidine, I will ask about the warnings given to doctors about it.  No, I will not start the fax with the words, “Dr. House says….”  I will in that fax explain that Mary Ann’s hands swelled and began to display contracturing.  I will explain that she ceased to be able to help with transfers, pretty much losing the abililty to stand.  I will mention that the daytime sleeping doubled in the number of days in a row that she slept.  All that began 36-48 hours after stopping the Amantidine.  Now that she has been on Amantidine for a week, the problems have diminished or returned to the level that preceded stopping the med.

The bad news is that so far the Amantidine does not seem to be doing again the very thing Mary Ann was taking it to do.  Those wavy movements that are apparent when Michael J. Fox is on television are called dyskinesias or dyskinetic movements.  They are caused by years of taking the basic med (brand name, Sinamet) that gives Parkinson’s patients the ability to move (and if a person has them, it reduces the tremors – fast shaking movements usually of a hand).

The Amantidine reduces the intensity of the dyskinesias.  They can be terrible.  There have been times in years past, when Mary Ann almost could not stay in a chair, arms and legs and body were twisting and turning so much.  More than once she has almost flown off the gurney in an ambulance or the Emergency Room.  She takes much less Sinamet now, and with the Amantidine those movements have been subdued.

Guess what?  Resuming the Amantadine has not brought back control of the dyskinesias.  Gratefully, she is not flying out of bed, but on occasion in the last week or so, I have had to click the seat belt on her transfer chair or wheel chair to keep her from slipping out.  It is an interesting challenge to try to help her put her jeans on when her legs are crossed and twisted, moving constantly.  Her muscles are very strong from years of those movements.  I have observed that trying to help her get dressed when the dyskinetic movements are going at full intensity is like trying to wrestle a Python.  No I have never wrestled a Python.

Dyskinesias are completely involuntary.  She cannot stop them.  Stess makes them worse, but just trying to relax will not make them go away.  I am not concerned about this development.  It is nothing new to us.  We just got spoiled when they were under better control.  Now that I realize what other problems the Amantidine seems to be helping control, I will not stop it just because it isn’t helping with the dyskinesias.

Two mornings ago Mary Ann fainted a number of times.  I tried to take her blood pressure, but when she is dyskinetic, it is just about impossible to take her BP.  The movements make noise in the stethoscope that confuses listening for the heart beat.  She fainted multiple times yesterday also.  I heard nothing through the stethoscope, no heartbeat at all, but since she was alive and well, there was, of course no panic.  She was fainting so much I had to lay her down in bed.  She napped for about three and a half hours.  When I did get her blood pressure after napping, it was 165 over 100.  It had been that high the day before when finally I could get it.

Following two mornings of so much fainting, I had decided to resume the Midodrine to raise her BP.  After getting the 165/100 later in both days, it seemed again to make no sense to be raising it higher.

Maybe if we need for me to get a part time job, I could help out at a Pharmacy.  That degree should be coming in the mail right after the MD, with specialties in Neurology and Cardiology, arrives.

On another note, instead of my usual visit to the lake this morning while Volunteer Elaine was with Mary Ann, I headed to church for the Baptism of Oliver, Grandchild to Don and Edie, good friends who have brought us food so often — Edie leads our Spiritual Formation Group.  Since the timing of the Sunday morning Volunteers allows them to attend the 8am Service, they arrive well after the 9:30am service has begin.  As a result I came in quietly in the middle of the service.

For the first time, the prayers included the public announcement that Mary Ann is now being served by Hospice.  At that moment, the fact that I was in church alone struck me.  I didn’t like it!  Afterward, I ended up at Don and Edie’s for a celebration with food.  I would normally have gone to such an event with Mary Ann.  I didn’t like being alone!

I have heard from those who have lost a spouse just how difficult it is to go places alone, places that the two had always gone to together.  Today, that awareness took on a new dimension.  On the positive side of that new level of awareness, I celebrate even more being together with Mary Ann all day long every day.  My gratitude for having retired when I did rather than waiting another year is even deeper.  Whether she is asleep or awake, lucid or not, I am glad she is here.

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 Doctor who treats himself has a fool for a patient.” Not only do some who read my posts show love and concern and words of compassion and support, some of you are also worried about how I am doing.  You may very well suspect that I am trying to treat myself spiritually and mentally, against which the above aphorism warns.

You may not change your mind after I have described what leads me to feel secure and healthy in the midst of dealing with so much over which I have no control.  I hope you catch sight of some of what keeps me grounded spiritually and mentally.  I will also share with you some things to watch for that might be symptomatic of losing my bearings.  What I will share is not just about me but anyone who is in a role like mine, or struggling in any way with things over which they have no control.

Last nights post was a window into the specifics of one of our challenges.  I have chosen to write in great detail what we are going through and my feelings about it.  I do so for a number of reasons.  One is that I think it is more interesting, and brings to life what we are experiencing in a way that is accessible to someone who doesn’t have direct experience with whatever it is.

I write in such detail the struggles we are going through and my feelings about them so that readers who are in this kind of role will be reassured that they are not alone in their frustrations.  Somehow it is a little easier to endure seemingly impossible situations when it is clear that there are others doing so.

I write in such detail, including feelings of helplessness as options seem to narrow and the boundary of the ability to cope comes into view. so that those who happen not have been there can catch sight of that place.  That goal is to encourage all of us to look each other with a level of compassion, realizing that the people we know, many of them, may be in the throes of some sort of personal battle, suffering in silence.

I am not silent.  One of the purposes of sharing all the gory details of our journey is that it helps me not to be silent.  I have been using all of you who read these purposes as a collective therapist.  You listen.  No one can go through another’s pain and experience it for them.  Each of us has to survive our own pain.  Many of us like doing so in a community.  You are my community.  The Volunteers are my community.  Friends and family are my community.  I am also part of your community.  One of the greatest joys in the ministry has been listening to and talking with others, maybe some of you, when you have been dealing with things over which you had no control.  I can only hope that the time we spent together helped.

When I write, I seek to be straight with you.  I have chosen, wisely or unwisely, to forgo any pretense that because I am a Pastor I am always pure and holy and strong and capable and wise and completely in control mentally and spiritually.  The tradition of which I am a part is about the Grace of God.  That means I believe that I am loved and forgiven just the way I come, ugliness and all.  I am not saddled with the hopeless task of becoming so wonderful and loving that I measure up to God’s expectations.  I need to be able to fail God and know that God will not fail me — even though it would be only fair for God to do so.  I don’t want a God that treats me with fairness.  I want a God who treats me with mercy.

Here is my assessment of how I am doing.  I think I am doing well.  I feel whole and full of life.  I hide very little from you as I write.  By doing so, it helps me see the reality of what we are going through here. It feels healthy to me to be able now to cry, to grieve, to express frustration, as well as describe the natural beauty that nurtures my spirit. I am free to feel the pain deeply because while it is very real, it does not have within it the power to destroy me.

Here is where the faith tradition of which I am a part frames my world view in specific terms.  I affirm that the One whose actions consummated the deal that has resulted in the Grace of God sustaining me and any who happen to recognize a need for it, has shown me how to live.  He loved people deeply, he knew how to party, he had compassion, he cried, he got angry, he got frustrated with others, he went off by himself to pray, he went to church, he felt pain, he felt overwhelmed, he cried out in desperation from the means of his execution, he faced death without pretense, went into it, through it all, and came out on the other side with life past any power to destroy it.

I feel utterly and completely secure in the love that surrounds me from the One who creates life in me every day, who has put his life on the line for me, whose Spirit nurtures my spirit.

In human terms, I have children and their spouses who listen to and support Mary Ann and me.  They will do anything in their power to be there for us.  I have Brothers and Sisters who care about us.  Every Wednesday morning four of us spend a couple of hours with Scripture and the reflections of others who have gone before us in the faith.  We talk about God’s participation in our lives moment by moment, day by day.  While not often enough, the interactions with friend John from Oklahoma have been exceedingly nurturing Spiritually.  At the moment he is leading a group on a mission trip to Guatemala.  Please keep him and his group in your prayers.  The times I spend in reading and meditation and solitude (deck time, listening to music, appreciating the beauty of nature) are pivotal in maintaining Spiritual and mental equilibrium.  The retreats to St. Francis of the Woods in Oklahoma are powerfully healing.

The online community of those caring for spouses with a form of Lewy Body Dementia has provided a place where complete understanding can be found.  There are many things that I would not say here in these posts that can be said openly in that group with utter and unconditional acceptance.  That group demystifies things that could have more power than they deserve. Reading those posts daily helps put our struggles in perspective.

Words are an important way for me to process what we are experiencing.  Using them in writing and in interaction with anyone unfortunate enough to ask how we are doing, provides a wonderful release.

Here is when to worry: when I stop writing and talking.  It will be time to worry when I no longer shower and wash my hair in the morning, get Mary Ann dressed and fed, make the beds and clean the commode, clean the kitchen counters, drink PT’s coffee and eat Baskin & Robbins ice cream (actually I should stop that last one, it would be healthier), feed the birds.  If I start telling everyone how perfectly I am doing, never sad or frustrated or out of control or grumpy or angry, always sweet and nice and wonderful, then it will be time to call 911 and have me institutionalized.

All of that being said, “The Doctor who treats himself has a fool for a patient.” I appreciate people asking the hard questions of me since I could be deluding myself into thinking I am doing better than I am.  When the Hospice Social Worker came, she asked very many pointed questions of both Mary Ann and me.  I felt I was being absolutely honest with her when I answered each question.  I recognize that there are still more difficult times coming.  I feel healthy spiritually and mentally now, and I expect to deal with what comes as it comes in ways that express fully what I am going through. I am on the pay as you go plan.  When I hurt, I will hurt and when I am wounded, I will feel the pain.  With that Grace of God as the power, healing will come.

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.

She was sitting up in the chair in front of the television.  Her head started jerking forward and back up.  Her arms fell to the sides of the transfer chair.  She was out.   She had not stood up, she was just sitting there when it happened.  Medical folks call it Syncope.  You and I call it fainting. passing out. 

Why did it happen?  Her blood pressure dropped until it was no longer high enough to fight the pull of gravity.  There was no longer enough blood pumping to adequately supply her brain. 

It didn’t just happen once, or twice, or three times.  I lost count.  It was probably five or six times, one right after the other.  It has happened before, but never that many times in a row.  Only two or three times before has it happened while sitting down, unless it was right after standing up or walking or trying to get up — not just sitting down.

There is no explanation of which I am aware as to why the blood pressure is too high sometimes and too low other times.  It has been high almost her entire adult life.  That is called Hypertension.  She also has Orthostatic Hypotension.  That means, when she stands up, sometimes the Autonomic Nervous System [ANS] does not trigger the smooth muscles surrounding the arteries quickly enough to constrict to compensate for the additional gravitational pull down on the blood in her circulatory system.  Read the side effects on very many of the common medications we take.  They warn that there may be dizziness when standing up while taking the med.  That dizziness is a moment of Orthostatic Hypotension, low blood pressure when standing up. 

It sometimes happens to folks who have had Parkinson’s Disease for a long time.  It very often happens to those who have a form of Dementia with Lewy Bodies.  Parkinson’s Disease Dementia is one of those forms.  Little bits of material called Lewy Bodies form on brain cells in the part of the brain that runs the Parasympathetic System of the ANS. 

What all that means is that there is an insidious process that makes life still more difficult to some who are already in a very tough battle.  I know what the explanations are for high and low blood pressure in Mary Ann’s circumstances.  What I don’t know, nor does anyone else, is why for many weeks it has hovered at a frighteningly high level with no fainting spells, and now it is running high at times during the day and plummeting at other times. 

She had fainted some earlier this morning when she was up and down, using the commode. When it happens there, I have to hold her up with my shoulder to keep her from slumping forward.   Then after maybe ten or fifteen minutes of multiple times fainting while sitting in her transfer chair in front of the television, the Hospice Aide Sonya arrived for her first time giving Mary Ann a shower, washing her hair and dressing her.   I thought there was not a chance that Sonya would be able to handle her, even with the new shower chair with arms. 

Mary Ann did not faint once during all the ups and downs of getting into the shower chair, transfering back to the transfer chair she sits in during the day.  Why not??  Why does she faint one time and not another.  This is such a nasty disease, refusing to submit to patterns that can be anticipated. 

Now comes the question, do I resume giving her the Midodrine, a medication that raises blood pressure?  Her heart and kidneys are being damaged by high blood pressure.  I will take her BP in the morning and decide what to do.  If it is exceedingly high, I will not give her the Midodrine.  If it is exceedingly low, I will.  Of course, it is not as simple as that.  If her BP is normal, what should I do?  Normal is not high enough to guard against moving too low when she stands.  It often changes from way too high when she first gets up to way too low in an hour. 

This is an old story heard many times by those who have reading these posts since I began writing this blog just about a year ago now.  You have heard me talk about this many times before.  Here it is again.  It no longer scares me.  It just makes it harder to deal with Mary Ann’s penchant for hopping up and heading off, especially when she is hallucinating.  I have to actually sit a few feet from her every moment she is awake and alert, since she will stand and may fall soon thereafter.   She is completely unaware of any concern.  She doesn’t know she has fainted after she has become conscious again. 

She surprised me and slept fairly well last night.  She did all right at breakfast, fainted for a while, had her bath, ate lunch as Hospice Nurse Jennifer filled out some forms and took her BP.  It was 100 over something, still very low.   Mary Ann sat for a while and then headed to the bedroom and slept for four or five hours. 

I got her up for supper.  We went out again to pick up ice cream and a tankard of PT’s coffee to reheat in the morning (I’m a hopeless fan).   Since she was again in pop-up mode, I needed to get her in the car, seat belted in, so that I could relax and know that she was secure.   The ice cream was just an excuse for getting her into a secure place for a while.  You believe that, right?

Not long after eating the ice cream, she headed off to bed.  In spite of the long nap, at least at the moment she is sleeping.  It may not last. 

One of the people in the online Lewy Body Spouses group lost her husband today.  She described in detail the rapid decline and the process of dying.  My words to her were these:

You have been a mainstay in this group for a long time.  You have put words to what we have been experiencing.  You described what awaits us.  My condolences are laced with anticipation, as a result, I feel vividly what you have just experienced and pray for the peace Charlie now has to free you to find peace here, understanding that the peace does not void the pain you feel.  That is the price of love. 
Peter”

Our turn will come.

Not yet, but there are seven guys with trumpets of rams’ horns followed by a large crowd who have been circling the house for some days now.  Should I be concerned??

The addition of a sun room that will change exterior space into interior space adding a six foot by nine foot sun area with twelve feet of floor to ceiling glass (six feet of which is sliding doors) is now in the process of construction.  The new exterior walls are almost done.  The old interior walls will be removed some time in the next few days, probably Monday.

We now spend most of every day and night in this little townhome, 1150 square feet upstairs — easy to care for but somewhat confining.  The large pondless waterfall that we put in last summer is wonderful, but not visible from inside the house.  When this project is complete, the waterfall will be in full view.

Mary Ann’s assessment of the project is that I have really gone overboard.  I think when all is said and done, she will like it very much.  She has never enjoyed going out and spending time on the deck.  This way she can see the beauty of the area behind the house from the warmth or the cool of the house.

I will make no pretense.  This is for me.  I am nurtured by the outdoors.  I crave light.  This will provide access to both while still in the same space as Mary Ann, keeping her in full view.  When the project took shape and the deal was consummated, it was not so clear that Mary Ann was declining to the degree that is now apparent. It seems to me that the timing is actually working out well.  This is a helpful distraction from the focus we have had on preparing for the next phase of our lives.  The project feels very life affirming to me.   Yes, we are spending the Kids inheritance!  They know it and have encouraged us to do so.

The last couple of days have included two nights of adequate sleep, interrupted, but not too often.  Yesterday she ate well for two meals and missed the third, sleeping through it.  Bath Aide Zandra did do a shower since Mary Ann’s leg strength seems to be returning.  She had problems with her, but got the job done.

Today has included lots of fainting, even just sitting in the chair.  I hope that will subside for a time.  A huge rolling shower chair has now been delivered.  Hopefully, that will make a difference.  The Hospice Aide will come tomorrow for the first time.  This way Mary Ann will get three showers a week.  Since she is incontinent much of the time, it is good to keep her clean.  We change disposables very often (cost adds up fast, but worth it) to avoid urinary tract infections [UTI].

The hallucinations were in a challenging mode.  Mary Ann was popping up to go somewhere and do something much of the time she was out of bed.  I, of course, needed to get to her immediately to keep her from falling.  When I got there, she usually didn’t know what she was up for or where she was going.  A few times she had a need that was created by a hallucination. A few times when she was lying down but awake, she was having a waking dream and talking to me about things that had no connection with reality.  I am sure the hallucination/delusion/dream times are distressing to her, and they certainly are very difficult for me to deal with.

The Hospice Chaplain stopped by to introduce himself.  It is a frightening thing to put two preachers together.  Poor Mary Ann couldn’t have gotten a word in edgewise even if she tried.  He would come at whatever intervals we chose.  Since we have a good support system, I suggested once a month.  His time will be best used with those many who do not have an active support system.  It is nice to have an option that is not part of in our organization or denomination.  He spent a good portion of his career in Brazil.  I suspect he has plenty of interesting stories.

Later in the day friend (and former parishioner) Don came by to check out the project.  He had a couple of good suggestions.  More importantly, he brought a cup of coffee from PT’s.  We stood there talking long enough that the workers thought they might put us to work.

For supper we enjoyed a small Lasagna that Daughter Lisa had made and put in the freezer for us when she was here.  Afterward Mary Ann was willing (of course) to head to Baskin & Robbins to get some ice cream treats to bring home.

She is now in bed.  I suspect, given the hallucinations today, tonight may be a difficult one.  We will see how it 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.

Even though at the family meeting we all heard Mary Ann say yes, she would like to have the Do Not Resuscitate order in place, it is not easy to formalize that decision.  There is a paper to be signed and witnessed by someone outside of the family to make it valid.  It can, of course, be rescinded at any time. 

It was a help to have a long conversation with our Cardiologist who knows Mary Ann’s situation intimately.  It was almost seven years ago that she went into the hospital through Emergency with Congestive Heart Failure.  That was his first exposure to the complexities of Mary Ann’s unique situation.  He is the one who said she was within a hair’s breadth of going on a ventilator at that time. 

It was then that the silent heart attacks were discovered.  We apparently assumed it was just bad reflux from taking all the medications every day for the Parkinson’s.  The Cardiologist confirmed just how unlikely it would have been then to imagine that almost seven years later, she would still be here and we would be having today’s conversation.  In fact, he admitted that while none of us can predict such things, even with all her heart problems, he does not expect that to be what finally ends the journey for her. 

Mary Ann is one tough Cookie!  I respect his assessment of the her situation.  In fact it encourages me that while Hospice works with a six month trajectory, Mary Ann may have a different idea.  As difficult as this is sometimes, I would rather continue for a long time than lose her. 

In fairness to Mary Ann, we need not to do things that could prolong her days past her ability to have some quality of life.  Yes, we seem to have moved into the last leg of the trip.  We need to be realistic and put in place plans that fit those circumstances.  We do not, however, have to assume any specific time frame.  We can’t know that.  While we are here together, we are here together.  It is not that somehow there is less of Mary Ann because she has a cluster of health problems that seem to be moving into the end stage. 

Earlier today I read a post in the online Lewy Body Dementia Spouses group that was a lengthy article that was published in England containing a detailed description of LBD and stories of folks who have had it.  It was interesting to see in such specific terms so many of the problems Mary Ann has, especially the hallucinations and delusions.  Mary Ann’s is a textbook case.  The article pointed out that the whole person is still present in someone with LBD pretty much to the end.  That whole person comes in flashes or for longer periods of time, without warning when that whole, lucid person is about to return or about to leave again.  It is confusing but at the same time comforting to know she is likely to still be with us some of the time to the very end. 

One thing about which the Cardiologist was adamant was to let go of the heroic measures and do exactly what the Hospice folks asked us to do.  Call Hospice, don’t call 911, don’t go to the Emergency Room, don’t use the paddles, don’t do CPR, don’t go to the hospital, don’t insert a feeding tube or other mechanisms for prolonging days that are coming to an end naturally as her body winds down.  Yes, use every medication available to treat immediate symptoms.  If there is an infection, use antibiotics.  Control pain to the degree possible.  Gratefully, most of the things above are already in the pretty standard Living Will Mary Ann and I had done by a local Attorney credentialed in Elder Law. 

It was very helpful to have confirmation by the Cardiologist that we have made the right decisions along the way.  In Mary Ann’s case the combination of End Stage Parkinson’s, Parkinson’s Disease Dementia that is progressing rapidly, and a Cardio-Vascular System that is well past repair, made the decision process less challenging than others might have. 

With all that said, this is Mary Ann we are talking about.  Seven years from now the Cardiologist and I may be having another conversation about Mary Ann much like today’s –” Who could have guessed seven years ago….??”

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.