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March 24, 2010

Too Quiet!

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , |
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The laughter therapy program has hit the road.  The Joy/Terry/Cherri serum moved on this morning.  I have suggested to them that they designate themselves The Three Therapists (like the three Tenors) and develop a supplemental source of income.

Mary Ann was determined to get to her Bible Study this morning.  We left for church while the three were still at the house.  Actually, it made the good-byes a little easier. The process of getting out of the house this morning resulted in our being a few minutes late for the Bible Study. She had a mild fainting spell.  Mary Ann hates being late, but the group was tolerant of us when we arrived.  I felt bad interrupting, but I knew Mary Ann needed the time with them.  Apparently, she did reasonably well there.

After the Bible Study, we headed to McFarland’s to eat.  Mary Ann did reasonably well there also.  At the end of the meal, she seemed to weaken.  I needed to accept the help of a thoughtful customer to get her coat on as she tried to stand in front of her wheel chair.

It was not long after we got home that she ended up in bed napping.  That happened just at the time Hospice Nurse Emily arrived to check in and do Vitals.  Mary Ann’s blood pressure was about what it should be for a twenty-five year old.  It vacillates so much that I am seldom surprised by how high or low it is when measured.

Mary Ann slept soundly for a few hours this afternoon.  She got up for supper, but was in bed again fairly early this evening.  So far she seems to be sleeping well.

While the Hospice Nurse was here for a while, and the workers were using power saws, providing some noise and activity, it just seemed too quiet around here with the crew from the north on their way back home.  I realize just how boring life is much of the time for Mary Ann.

Certainly all the activity did wear Mary Ann out.  It will be interesting to see how much sleeping she does in the next couple of days.  It is a very good tired.  What a wonderful way to become worn out.  I suspect that the endorphins released by the laughter are still working their healing magic inside of her.

The challenge for me will be to find ways to bring interest and stimulation into her days.  It is a daunting challenge.  I have tried before with very limited success.  The limitations that have come with her recent decline have made the challenge even more difficult.

The day will be busy tomorrow. At the end of next week, Daughter Lisa and the family will come to stay with us for about a week.  Combined with the remodeling project, I hope there will be enough to keep her engaged.

Right now, we need some prayers for Granddaughter Chloe (11 years old), who has not been able to shake a undiagnosed problem with nausea that has been going on for a couple of weeks.  Prayers are for a clear and concise diagnosis and effective treatments, please.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

March 22, 2010

Teens Arrive! Laughter Begins!

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Uncategorized | Tags: , , , , , , , , , , , , , , , , |
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I am witnessing a working Time Machine (the machine itself being completely invisible).  There were sitting at the table tonight, gathered around a couple of pizzas, four teenaged girls talking and laughing as if their bodies were not a number of decades older than that.  Mary Ann was fully engaged.  Her voice may have been soft, but she was a part of it.  She laughed along with the rest.

These four have known each other since the Fifth or Sixth Grade.  They have a world of memories since they went all through high school together.  They have kept in touch throughout the decades that have passed since then.  They graduated from East Aurora High School (in Northern Illinois) in 1959.  Every time the four of them get together, they continue on as if they have barely taken a breath since their last visit.  It is one continuing conversation.

They traveled a long way to come and see Mary Ann.  I know it means a great deal for her to see them again.  Of course, painfully, it will likely be the last time they get to be together.  I would not, however, bet on it since Mary Ann has demonstrated such resilience over the years.

Mary Ann began the day early again.  After the often fought battle to get the last hour or two of sleep in the morning, she was alert and responsive.  Again, as has happened often recently, she fainted a number of times on the stool as there was some otherwise healthy intestinal activity.

Volunteer Jan had arrived and took over after the fainting spells subsided.  Again, it the fainting seems to associate with both the kicking in of meds and intestinal activity.  Jan washed her hair and did her nails for her, while I headed up to the lake for a while.  The lake was beautiful.  I was immediately treated to views of some raptors, hawks, an eagle.  One of the hawks could have been a leucistic Red Tail Hawk.  I do not know enough about birds yet to be certain about that.  There were aome of those beautiful White Pelicans, flying in a relaxed formation of about twenty, circling over the lake, and over me at various times.  Again the bright white contrasted by the black portion of the wings that span five or six feet made watching them a breath-taking experience.

There was another less pleasant experience at the lake.  Remember the snow that I shoveled yesterday?  There was snow at the lake.  I drove only on paved roads, with little enough snow and slush and ice on them to avoid problems.  I got to my spot in the parking lot near the dam without trouble.  When I left, I went out the other side of the lot, up that road.  There was a fairly thin layer of wet snow on it.  I did fine as I approached the last few feet.  The top of the snow did not reveal that the road beneath dipped.  When I moved into that last bit of road, the van stopped moving.  I ended up stuck in a snow bank that did not reveal itself on the surface.

The simple solution was not so simple.  I tried to back out so that I could back down to the lot and go up the road on the other side.  The van would not budge.  The snow was wet enough that it just packed and formed an icy base under the wheels.  Having learned to drive in the winter in northern Illinois, my pride was hurt.

There were no others on the road in the area, until a passer by in a four wheel vehicle stopped.  It took a very long time of studying the predicament, trying to rock the van back and forth (tough with an automatic transmission).  Finally with the good Samaritan pushing on the front of the van, I was able to begin backing down the hill.  Once back in the parking lot, I was able to get back up the hill using the road by which I had come down to the lot.

I stopped for groceries in preparation for the visit of Mary Ann’s Friends, and made it back home.  After eating, Mary Ann stayed up much of the afternoon.  She did nap in her chair with her head on the rolling table that sits in front of it.  By the time Joy, Terry and Cherri arrived, she was rested enough to greet them and enjoy them.

Two are in the hotel and one staying downstairs.  My hope is, of course, that Mary Ann will sleep well tonight so that they can continue tomorrow from where they left off tonight.  The construction will continue with sanding sheet rock joints and the multiple corners tomorrow.  We will see if the construction activity moves the group to the hotel lobby seating area.  The birds entertained today.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

March 20, 2010

Face Death — Find Life

Posted by PeterT under Daily Challenges, Hospice, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , |
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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.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

March 19, 2010

Good Friends — Great Day!

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , |
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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.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

March 18, 2010

Let There Be Light!

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

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

March 13, 2010

Blood Pressure Plummets

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

 

March 11, 2010

Cardiologist Agrees!

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

 

March 9, 2010

Cherish?? Maybe not Every Moment

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , |
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“I am cherishing every moment we have together.”  That is what I said in last night’s post after the challenge of feeding Mary Ann.  I lied!  As terrible as it sounds, I don’t cherish every moment.  At 4:15am after having been aroused for one thing or another multiple times an hour (the last one only five minutes before) Mary Ann insisted on getting up.  I did not cherish that moment with her.  I got her up and out in front of the television in the living room and went back to bed for an hour.  Then she was ready to lie down, at least for a while.

I guess I am a terrible Husband and Caregiver to admit to not cherishing at all times my sick wife on the last leg of her journey from here.  Yes, I do feel guilty about it.  I sound so sweet and loyal and loving when I say I cherish every moment with her.  I am not all those things!  I am just an ordinary selfish somebody trying to live out my life and my relationship with Mary Ann with a degree of honor, expressing my love for her.  I do cherish most of the time with her, extending even into waste management.  I just get grumpy when I don’t get my beauty sleep.  (Who is going to be the first smart-aleck to suggest just how clear it is that I am seriously sleep-deprived?)

Is it the Amantidine that we resumed that is making the hallucinations and restlessness so intense, or, since she had slept four days, were we just due for the usual return of that behavior?  God only knows, and He ain’t telliin’.  How about the idea of somehow trying to get God a wireless router so that he could just email responses to prayers and cries for help??  How getting on that, Steve, Bill?

When Daughter, Lisa was here last week, her Mom slept all but about four hours of Lisa’s visit.  “Lisa, I would gladly have traded last night for one of the sleep days or nights you had when I was gone.”  Yes I am grateful that Mary Ann is napping now.  I gave her the morning dose of Amantidine, still hoping that she will regain the use of her hands and the ability to assist with her leg muscles when being transferred from her chair to the bed or toilet stool or dining room chair or car, should we be able to get her out again.  This almost 67 year old body is beginning to show its age (the mind is still 25 years old, except for the memory which is pushing 90).

At one point last night Mary Ann was convinced that she was not in her bed, but another bed like hers.  She was convinced this morning that the dining room table was not our our dining room table.  In fact when I first tried to transfer her to the dining room chair for breakfast, she refused since she didn’t want to sit next to the bride.  At least when I checked with her, the bride wasn’t Lulu (the woman I married after divorcing her in one of her dream/hallucinations).  She didn’t know who the bride was.  When I asked if she wanted me to turn on the television she said it was “his” television, not ours.

She has been napping for about three hours now.  Yes, I am grateful for the break.  I just don’t want her to sleep too long.  She had a good breakfast, but she has not yet had lunch.  It is after 2pm.  Our Daughter-in-Law Becky relayed an email from a close friend who works for a Hospice.  In that email, she said that people come to need less nourishment at this time in life, suggesting that I can relax if a meal is missed.  Mary Ann always “ate like a bird” — one reason she has never gotten overweight (very annoying) in all our years together.  Other than ice cream, she usually eats what would be the equivalent of a child’s portion (a pre-teen child).

This morning Bath Aide Zandra brought a helper with her since Mary Ann had fainted so many times the last time she did her shower.  Zandra was concerned that Mary Ann had hit her head because she couldn’t get into the right position soon enough to stop her from falling off the shower chair.  She asked about the possibility of getting a secure three sided shower chair so that Zandra could stand in front and be sure she wouldn’t fall to the side.  We had a tubular metal rolling shower chair that we obtained a few years ago.  It turned out to be unsafe because of the reinforcing bar across the front, making safe entry and exit from the chair virtually impossible.

Zandra was a bit distressed to see how much Mary Ann had declined since her visit last Wednesday.  Today Mary Ann could not assist at all in getting from the transfer chair to the shower chair and back.  Mary Ann’s hands were fine last Wednesday but swollen and clubbed (nor sure that is the right word for describing the claw-like form) today.

I just called our Hospice Nurse, Emily, who listened carefully to what we needed for the shower.  She said she would try to find it for us.  In fact, she said that if we didn’t hear from her, one would be delivered tomorrow afternoon.  Holy Mackerel!! That is an unbelievably fast response.  I have seen PVC pipe chairs that looked sturdier, but the last time I searched a couple of years ago, I didn’t see one without a bar in front.  I hope the supplier Hospice uses has something workable.

Mary Ann had an appointment with the Dental hygienist for her much needed quarterly cleaning scheduled this afternoon.  I did try to get her up in time to go, but she declined.  That was at about 1pm.  It is now 2:45pm and she is still sleeping.  Again, she didn’t want to go to bed until after 11pm last night and spent much of the night, especially from 2am or 3am on, up and down.

She slept until some time after 5pm. She ate a good supper, sat in front of the televsion for a while, then headed back to bed about 7:30pm.  At about 8pm she was hungry and wanted a bowl of ice cream again.  After taking some Ibuporfen for back pain and then later taking her night time meds, she is now lying down.  I am not expecting her to settle in without lots of restlessness tonight.  We will see.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

March 8, 2010

Mary Ann is Now in Hospice Care

Posted by PeterT under Daily Challenges, Family, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , |
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What that means is that we have someone to call whatever comes up.  A Hospice Nurse will stop by a couple of times a week.  We have added one day a week of having an Aide to help with shower and hair.  Mary Ann loves current Bath Aide Zandra, so we will continue to use that paid service.  All the Hospice costs are covered by Medicare.

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

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

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

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

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

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

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

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

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

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

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

I continue to be overwhelmed by the words of support through the electronic media.  There is no chance to feel isolated and alone when so many are thinking of us and praying for us.  Thank you all for that.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

March 4, 2010

Hospice Report — Lisa’s Here — Construction Begins

Posted by PeterT under Daily Challenges, Family, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , |
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We met with two folks from a local Hospice program for about an hour and a half this afternoon.  The construction has begun on the sunroom.  Lisa has arrived.  Three of the anticipated events have been (are being) realized. 

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

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

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

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

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

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

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

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

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

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

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

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

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

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

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