January 5, 2010

Some Days are More Frustrating than Others.

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , |
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I am not completely sure why.  Some things are harder to accept than others.  There is one visual cue that removes all my ability to keep things in perspective.  It takes me right up to the edge of my ability to cope, and then pushes me over.

There she was, half way across the bathroom, walking with her pants around her ankles.  I had stepped out for only moments to give her some privacy.  On the way out, I asked her to please remember to push the button when she was done and reminded her not to get up until I arrived to help her get up.  She did neither.

That visual cue seems to release my deepest fears that the next fall will be the last one.  It surfaces every feeling of frustration that comes when her choices seem to fight against the very help I am trying to provide.  That visual cue pushes me over the outer edge the confidence that I can care for her here at the house until the end.

I got her dressed, put her on the bed, and had to leave the room for five or ten minutes to gather my composure and try to regain perspective. I wonder if part of my reaction is a safety valve blowing off steam to keep the boiler from exploding.  I wonder if it isn’t a grieving process going on that I ignore until something like that visual cue shatters my illusion of control.  I wonder if part of it is my refusal to admit to myself just how hard this is.

Yesterday morning when I went outside to clear the drive and sidewalk of snow for the Volunteer, she tried to get up from her chair, fell and took with her the table in front of her, knocked the computer monitor to the floor along with a cup with some juice in it and a number of other things on the two tables around her.  She was lying in a heap among all of it. Gratefully, as always, she was not hurt at all.  I was upset that I couldn’t so much as go outside to shovel the sidewalk without her getting up, creating the vulnerability for a fall.  Then I felt responsible.  While she couldn’t remember why she got up, I had not gotten her a new box of Kleenex, I had not gotten her fresh water, I had not taken the audio receiver with me outside so that I could hear the electronic doorbell, which she would not have pushed anyway.  I realized again how hard it is to anticipate every impulse need and provide for it so that there will be no need to get up.  It is hard to anticipate and cover every impulse need of another person — one who cannot tell you those needs in words.

She has been having a difficult time keeping things clear the last couple of days.  There are flashes of lucidity, but most of the time, it the hallucinations have continued, verbal communication has been virtually gone, and there have been times of great confusion.  At supper tonight, after working on the baked potato on her plate for a long time, mostly with her fingers, I asked if she saw the meat.  She said no.  A large piece of meatloaf was there on the plate right next to the potato she had been working on. She has often been in eyes closed mode.  She will be acting in every other respect as if she is doing things normally, except that her eyes are slammed shut tightly.  Often when that happens and I ask her to open her eyes, she will answer that she can’t.  I have learned how to walk her from one place to another when her eyes won’t open.

I just came back from the bedroom.  Mary Ann had gotten up on the side of the bed.  She was trying to pick up needles that were not there.  As we were sitting there, a couple of times she told someone to stop pulling on the quilt hanging on the wall a few feet away.  She asked we how soon we would be getting out of here.  Then she asked how we were going to get all the furniture back.  I asked if she was thinking that we were in a different place from our home and that the furniture had been moved here.  She said yes. Like Capgras Syndrome, this is a Delusional misidentification syndrome.

I just went back again.  This time she asked me to take the girls out of the bedroom.  When I asked if they were our Granddaughters, she said no.

At the same time, earlier today when I mentioned the library, she suggested that we eat lunch there.  Since we couldn’t find a parking place, we at at Bobo’s Drive-in.  At the library, she managed to pick out two books from the large print section. We had sundaes at G’s after the library.  When we got home she ended up wanting a nap.  After an hour and a half, after taking medicine and using the bathroom, I took her out to watch television.  She got up and headed back to the bedroom to nap some more.I had to wake her up for supper.

Back again. She is just having a terrible time accepting that it is night and time to be in bed.  She wanted to get dressed this time.  It is about 12:15am at the moment.

I have just been with her a few more times.  The last time included a snack and a paper towel to wipe up something that was not there.  It is about 1am now.  I am wondering how much of the night will be spent with the delusions and hallucinations.  Last night we were up quite a number of times.  There has been very little sleeping in happening in the last week or so.  The interrupted sleep is not helping the coping skills, nor is it helping the delusions and hallucinations.

I am going to edit this now and get to bed in hopes that my presence will help.  There is no good reason to hope it will help, but I am too tired to stay up any longer.  I guess interrupted sleep is better than no sleep.

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.

 

January 3, 2010

Quick Changes in Alertness

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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Last night Mary Ann contiued her confusion.  While lying in bed, she asked about the group of people somewhere behind me or in her view in the living room — was it the Thursday group.  She asked if it was time to get up a couple of times, once at 9:20pm and again at 10:30pm.  She said something explaining what she was thinking, something that just did not compute, something about her relationship in location to others.   Once she got to sleep, she slept pretty soundly.

This morning, when she got up and was eating breakfast, I was looking through the Christmas card list.  I mentioned one couple at one point and she reminded me where they lived and that their daughter had twins.  These are folks with whom we have not interacted in decades, whom we remember mostly just at Christmas Card time.  I did not remember about the twins since it happened a year or so ago (I think).  Mary Ann asked about a former parishioner, whether or not she had died.  About a month ago she had gone into a Hospice House here, but had since stabilized and gone back to her Assisted Living apartment.  That Mary Ann remembered her situation was a surprise.  Mary Ann’s Bible Study about three weeks ago may have talked about it.   She said she wanted to go out to lunch today.   When I asked where we should go, she immediately said, “the Irish place.”   What a contrast to yesterday!  The place is called O’Dooley’s.  She always orders bangers and mash there.  Since she has never been an adventurous eater, it surprised me the first time she ordered it.  It actually is pretty straight forward, mild sausages and cheesy mashed potatoes. 

After an hour or so of alertness, she fell (while I was taking a shower), but as usual was not hurt at all.  After I finished showering, I got her back in the transfer chair — she fainted.  It was apparent that there had been some intestinal activity during or after the fall.  She became tired and asked to lie down.  There was some more intestinal activity and some major fainting on the stool.  She is now napping.  This was a particularly speedy trip down, up and down again on this roller coaster ride.

After her nap, we did go out to O’Dooley’s.  She had the Bangers and Mash.  I enjoyed the Portobella Mushroom sandwich with home made potato chips with a very tasty cheese dip and a Black and Tan (Guinness Stout and Bass Ale).   And I wonder why I am 25 pounds overweight.  When exactly is it that those New Year’s Resolutions go into effect?

What was sort of entertaining about the time at the restaurant was that when I asked the waitress if we had met, since she looked so familiar, she reminded me that during the five years she worked at G’s Frozen Yogurt she had often waited on us.  She remembered our usual order of two Turtle Sundaes, one in a larger cup so that Mary Ann could handle it better.  More reason for the extra twenty-five pounds.  It is still not fair that Mary Ann eats those good things and refuses to gain a pound.  That she brought half of her meal home and they didn’t even have to wash my plate since I licked it clean, might have something to do with that apparent lack of fairness. 

In addition to knowing the waitress, a young man from the kitchen caught me.  I recognized him as a former member of the parish I served before retiring.  He came over to the table, and we talked for quite a while, mostly about his future plans.  Both of the two were within a few years of high school.  It always pleases me when young people take the time to talk to us Geezers.  He also made a point of acknowledging Mary Ann by name as he left to get back to the kitchen.  That was a very thoughtful gesture, since so often someone in a wheelchair gets ignored.  Now that I think about it, I guess I am complicit in that problem, since I did not make a point of introducing him to Mary Ann. 

We rented some movies and watched one this afternoon.  After the Law and Order Marathon yesterday, I was grateful that we had been given a gift card at the local Family Video.  The movie was not very entertaining to us.  We were grateful when it was over.  Mary Ann was tracking well enough to recognize that she wasn’t impressed with the movie (“He’s Just Not That Into You”).  A customer in the video store had recommended it. 

Mary Ann went to bed very early again tonight.  I was in the living room when I heard the telltale thump of her falling to the floor.  She did not hurt herself, but she was pretty confused and seemed unable to come out with any words that made sense.  She was willing to lie back down and has been sleeping since.  That was about an hour ago.  By the way, she has had a stroke in the past.  This fall seemed like a pretty ordinary one.  The confusion afterward did not include the kind of speech pattern that is a telltale sign of a stroke.  She had no weakness on one side of her body.  Of course there are no guarantees since the range of some of her reactions often overlaps stroke symptoms.  We live in a narrow range of functionality.  There is a vulnerabilty we have just learned to live with.  Most folks who have lived very long are not unfamiliar with that vulnerability.

One especially pleasant phone call was one from Mary, who schedules Mary Ann’s Volunteers.  There are already ten slots filled for January, beginning tomorrow morning.  Those slots vary from two to three hours in length.  The weather may interfere with those visits, but it is a help to both Mary Ann and me that they are scheduled.  We have not had much time away from one another in the past week or so due to the blizzard and its aftermath. 

The ride the last couple of days has taken us up and down with rapid changes between the up and the down.  We continue to hang on for dear life during the down times and celebrate the up times. 

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.

 

January 2, 2010

Happy New Year 2010!

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , |
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Tired or not, it is a beautiful, frigid, but bright and sunny morning — a good way to start a new year.  I would like it to be on account of raucous partying, but this tired morning comes after attending to needs that continued until that midnight kiss last night. I finished editing last night’s post and got to bed at about 1pm.  Then every hour, on the hour, we were up with the usual, including two snacks, one at 3pm and one at 4pm. I should have known that a large bowl of ice cream would not suffice for supper.  That is all she was willing to eat — other than the four crackers and the handful of chex mix with a little Asti Spumanti at 8pm. The 2am and 5am activities were commode related.

Actually the 6am commode trip was at 6:20am, breaking the once an hour on the hour cycle.  At 7am, Mary Ann was up for breakfast and pills.  After an hour of watching television, she is now back in bed.  I, however, am wide awake and sitting here beginning this post!  I will continue later in the day.

It is about 3pm.  Mary Ann had a two and a half hour nap, then got up and ate lunch.  She has been watching television while I worked on a Christmas card list for this year or next.  Remember, it is the twelve days of Christmas.  I still have five days to go! 

Mary Ann changed the channel fifteen minutes before the end of the program.  I watched the end of it in the kitchen.  Just as it ended she got up and walked toward the kitchen, I presume to see what I was doing.  I came out to meet her and took hold of her to support her, then asked where she wanted to go.  We walked around the dining room table, and when we got to the other side, she asked where Pete was.  I reminded her that I am Pete, and she recognized me at the same time. 

Today she has been pretty disconnected with lots of little hallucinations.  At her request I gave her a dish of ice cream after lunch, and at one point she asked if the other one was mine.  She was seeing two dishes of ice cream in front of her.  Not realizing that the person helping her walk was me may have been a Capgras Delusion.  That is the delusion that a loved one has been replaced by an imposter.  It happened so quickly that it may not qualify as Capgras Syndrome.  A number of those in the online Caregiver Spouses of those with Lewy Body Dementia have to deal with Loved Ones who are experiencing Capgras Delusions.  The bad news about this disease is that it is a roller coaster ride with some scary dips.  The good news is that sometimes there great vistas on the peaks in the ride.  The goal is just to hang on for dear life!

It is evening now.  There was a visit by a good friend of Mary Ann’s.  She brought a bag of Christmas goodies.  Mary Ann did not really participate in the discussion.  I probably should have left the room for a while to see if they could converse one on one.  Today has been such a disconnected day for Mary Ann, I did not think she would be able to respond.  In retrospect, I should have given them a little time to at least allow the possibility that Mary Ann might respond. 

She went to bed at about 7pm.  I will give her the bed time cluster of pills in a few minutes, about 8:30pm.  That is the usual time she takes them even if she has lain down for the night before then.  A couple of the night time pills have sleepiness as a side effect. 

As I have continued the online Ignatian retreat, the focus now is remembering events in my adult life and their impact, any gifts they may have given, gifts that have helped shape who I am becoming. 

One event of monumental significance was the day the diagnosis of Parkinson’s was received.  I had moved to Oklahoma City ahead of Mary Ann and the kids so that each could finish at their respective schools, one graduating from high school and the othercompleting the Eighth Grade in an eight grade school.  I left in February to begin serving a congregation there and the family came at the beginning of June. 

While everything was as welcoming as it could be in the new parish, it was just about the toughest time in my life.  It was equally tough for Mary Ann and the kids.  Just the separation was almost more than I could bear.  I had not realized fully just how important Mary Ann and the kids were to me until that moment I watched the plane take off from the Oklahoma City airport after a visit.  I could not even tolerate the thought of life without the three of them. 

During those five months, Lisa had the added pain of dealing with the murder of the Principal of the tiny Lutheran High School she was attending.  His Daughter was Lisa’s best friend.  He had been a great support for Lisa during her years at the Lutheran High. 

Micah had developed close relationships with his classmates at the large Catholic Parochial school he attended from the Fifth Grade year through Eighth Grade Graduation.  He was chosen by his classmates to speak at Graduation.  The prospect of leaving those friends behind was tough on him. 

It was that March that the phone call came.  Mary Ann phoned me in OKC with the news that she had just been diagnosed with Parkinson’s Disease.  She had to deal with that life-shattering news by herself without my support.  I had to deal with it while among wonderful people with whom I had not yet developed any history.  Mary Ann was not willing to share the news with anyone else, her or my parents, her or my siblings, her lifelong friends, the people in the parish with whom we had just spent fifteen years building relationship.  For the next five years, that secret was to be kept from all but two or three people other than the kids.   We honored Mary Ann’s request, but it took a toll on all of us, especially when the symptoms became noticeable.

It is hard to put into words the impact that the Parkinson’s has had on our lives.  There is no way to even begin to imagine what our lives would have been like without it.  It is actually a waste of time to try to do so.  Time is too precious.  It is needed to live the life we have as effectively and meaningfully as possible.  We can process the impact of the Parkinson’s and assess its role in who each of us has become.  We have grown and learned more than could possibly be written in one blog entry. 

There is a level of maturity and wisdom that our children have come to have through dealing with their Mom’s Parkinson’s.  Earlier posts include sections they have written, reflecting on their experience in dealing with the Parkinson’s.  I am a far better and more effective pastor because of it.  Mary Ann has wonderful relationships with dozens of people directly due to the Parkinson’s.

While I am grateful for all we have learned from Mary Ann’s Parkinson’s, we would gladly have read a book on it if we could have learned those things without the Parkinson’s.   

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.

 

January 1, 2010

New Year’s Eve 2009 – Party On!

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , |
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It is 9:00pm on December 31, 2009, and I am sitting here at the computer with the last of the Asti Spumanti sitting next to me.  We partied wildly eating crackers and chex mix until we could eat no more – four crackers and one handful after another (that is two handfuls) of chex mix.  We drank that half-bottle of Martini-Rossi Asti Spumanti until there was no more to drink (other than the glass sitting next to me now).  If I slur my words while keying in this post, you will know why.  Mary Ann has crashed – well, she is lying in bed watching the Mentalist.  I think she likes the blond guy.

We toasted the new year shortly after 8pm. That means we celebrated the New Year with South Georgia & The South Sandwich Islands.  I suspect that South Georgia is not the one with Savannah in it.  In a moment of madness (probably not the Asti Spumonti, the glass is still sitting there), I emailed South Georgia and The South Sandwich Islands to wish them well in 2010.  By the way, the contact page on their web site said they would not send souvenirs nor can people fly there.  Visiting can only be done by cruise ship.

This was not Mary Ann’s best day in terms of alertness.  She seemed to have difficulty connecting with any attempts at communicating verbally.  It took a very long time to determine what would be acceptable for lunch.  We got Glory Days’ pizza slices for her. She napped for a couple of hours late this afternoon and woke thinking it was morning.  Later in the evening she seemed to begin to become a little more alert.  She is having trouble going to sleep and commented that she slept too much today.

This afternoon, just as she lay down for the nap, I got a phone call asking if I might stop by the hospital to visit a young couple whose baby came about five weeks early.  The couple are some of my favorite people.  They have been ministered to very effectively by the Deacons at the congregation. The couple have been on the roller coaster ride that comes with all the unknowns in such a situation.  Everything seems to be on course for a healthy little one to be heading home in a couple of weeks or so, but it is always a scary ride, especially the first few days.  I was affirmed that my visit was requested.  I made sure all was in order with the parish, since retired pastors need to handle any ministry to former members very carefully so that all is done appropriately.

It felt good to be in that role again, if only for a short time. The nature of my role here with Mary Ann does not readily accommodate such ministry activities.  That has been good for the new Pastor (currently out of town), giving him a chance to do what he was called to do.  I was able to leave the house and head to the hospital for a time, since the baby’s Grandmother is one of Mary Ann’s Volunteers.  She was, of course, willing to stay at the house with Mary Ann (who slept during the time I was gone).

While writing this post, a greeting came through Facebook from one of the Youth in my first congregation, the one I began serving in 1972.  Sara is no longer a Youth, but I will not venture a guess at her age.  She is taller than I am and could hurt me.  Actually, one of the other Youth from those years just turned 50!  How is that for scary!

In my remembering the Teen and Young Adult years in the online Ignatian retreat I am doing, I made reference in last night’s post to the volatile years at the high school at which I taught.  Those three years came just before the move to the parish in Prairie Village, Kansas (the Kansas City area).

I had come to the high school from the Seminary, having become completely disillusioned with the institutional church.  I had concluded that it was not reasonable to expect the institutional church made up of flawed human beings to be any better place than any other human institution.  It turned out to be a very healthy discovery.  Ultimately, I came to appreciate the one major difference between the institutional church and most other institutions, the freedom to speak openly without censure the heart of the message revealed in Scripture in all its powerful transformational truth.

In that last very long sentence (I had four years of Latin in high school – blame Cicero) I used the word “Ultimately.”  There was much that filled the space between the beginning of the disillusionment of the institutional church and that “ultimately” healthy understanding of it. The students at Concordia Lutheran High School touched my life powerfully in those three years.  There came a transformation of my faith from one filled with pain and struggle to one filled with hope and joy.

The Cliff Notes version is this:  I came to teach with no preparation in how to teach.  I had a lot of information in my head, but no training in how to communicate that information to high school students in a classroom.  The courses I taught had only titles, no textbooks, no curriculum.  The titles were Old Testament (Freshman Religion), New Testament (Sophomore Religion), and Doctrine and Life (Senior Religion).  The students had been in required religion classes since Kindergarten.  You understand my dilemma.  The moment I quoted a Bible passage or used the religious code words they had heard for ten or twelve years by then, their eyes glazed over.

I chose to avoid the jargon and teach the message behind the jargon.  The relationship and the trust that grew between the kids and me was something I could not have anticipated.  When the inevitable time came that the Principal called me into the office to tell me that my contract would not be renewed for the next year (the Friday after the Tuesday we had put Earnest money down on a house, with Mary Ann four months pregnant with our second child), the response of the students was more meaningful to me than there are words to say.  Without doing anything improper (no sit-ins) they came to my defense.

In the end, I was offered a contract for the next year.  By that time I had received a Call to serve the parish in Prairie Village.  I realized that at CLHS I would be a lightning rod and a scapegoat for the administration.  I also accepted the fact that my abilities fit the parish better than the classroom.  Those young people touched me deeply with the intensity of their faith, their understanding of Christian community, their courage, and their willingness to put themselves on the line for me.  I will never forget them.

The years working with Youth in the Kansas City area nurtured what had begun at the high school in Ft. Wayne.  The immediacy of the presence of God in the lives of young people is a marvel to behold.  During those years, I got to be an accessible Adult who said all the same things their parents were saying to them with the advantage of my not being their parent.  I gained far more than I gave those young people.

What emerged as my purpose in relating to young people who came through so quickly and headed on with their lives, going off to work or college, was to have a positive impact, however small it might be, on their faith, their understanding of themselves and their ability to relate to others.

Over the years, that understanding of my purpose has expanded.  None of us can control, shape, manipulate anyone else into becoming who we have decided he/she should be.  Whether it is Mary Ann, our Children, our Grandchildren, the people we serve in whatever job we have, for me the ministry to so many I came to care about, our role is have as positive an impact as possible on them as they come through our lives and we theirs. The times I have heard from people whose lives intersected mine in the past often lift my spirit.

I just went in and gave Mary Ann a New Year’s kiss as the fireworks are announcing that the New Year has just begun here also, after beginning four hours ago in South Georgia and The South Sandwich Islands.  I think it is time to bring this post to an end.

Happy New Year!  May you keep your hopes and dreams alive in 2010!

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.

 

December 25, 2009

Christmas Blizzard

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , |
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When I stepped out on the deck a short time ago, the snow squeaked when I walked.  I have seldom heard that squeak since I headed off to college in the fall of 1961.  Actually, I did have opportunity to hear that squeaking for my undergraduate years, since they were spent going to school in Milwaukee, Wisconsin and Northern Indiana.

The wind is howling through the trees.  The snow is blowing.  There is potential for over a foot of snow by morning and gusts of wind up to 50 miles an hour.  I felt an odd sort of nostalgia when I stood out there listening to the wind and feeling the cold and snow on my face.  I have no wish to live in a cold climate again.  When I step outside, I come back in right a way to enjoy the warmth.  Nonetheless, there are flashbacks to a time when I played endlessly in the snow, built snow forts, went sledding down every hill I could find in flat Northern, Illinois.

The Kentucky Crew, Daughter Lisa, Denis, and little Abigail and Ashlyn, headed off this morning to avoid the blizzard.  Otherwise they would have missed Denis’s family gathering and maybe a workday or two depending on travel conditions after the blizzard.  There is always a bit of separation sadness when the kids leave.  My Mother, even when we were older adults and she was in her 80’s, said that when we left after a visit, she would get in the car and go somewhere, maybe invite someone to meet her for lunch, to mitigate the sadness in the pit of her stomach.

I am almost glad for the blizzard.  It is distracting enough to take our mind off the time of separation sadness.  I am not glad for the timing of the blizzard.  We have missed out on every Celebration of Christmas in a corporate worship setting this year.  I am hoping to find something on the television or computer to help provide at least the illusion of worshiping in a corporate setting.

The changes in plans caused by the weather, something outside of our control, brings to mind a thread of discussion in the online group made up of Caregiving Spouses of those with some form of Lewy Body Dementia.  One of the members included the following quotation.

“The carrying out of a vocation differed from the actions dictated by reason or inclination. … The most beautiful life possible has always seemed to me to be one where everything is determined, either by the pressure of circumstances or by impulses such as I have just mentioned, and where there is never any room for choice.” Simone Weil.

The quotation was made in the context of reflecting on the acceptance of the Caregiving Role, immersion in it, and thoughtful wonderings about the prospect of having choice again should we outlive our Loved Ones.

The responses that followed included some blunt rejections of accepting the loss of choice and giving up other dimensions of the Caregiver’s life.  That thread has been very thought provoking.  I have written lots of words in earlier posts on this.  It was good for me to think again about what I am doing, the way I have chosen to do it, why I am doing it, and its impact on my quality of life.  I recognize that what I am doing as I reflect is very self-centered, but my reason for doing this blog is to help other Caregivers make sense of what they are doing.

Mary Ann’s needs are basic and constant.  It is not her choice that she have those needs.  They are just a fact of her life, and on that account, as her husband, my life.  Those needs do not leave much in the way of choice.  If I don’t respond to a need, there are consequences for her and consequences for me.

As in the quotation, there is not a lot of stress resulting from being conflicted about what to do from one moment to the next.  I simply respond as effectively as possible to the needs that arise.  There are few choices to be made.  What is at issue, at least for some of the respondents online is the struggle with giving up choice.

As I think about my circumstances, what has given me comfort and peace in living as a Caregiver, with few choices, is the reality that I have chosen this role.  There were other alternatives with varying degrees of difficulty in making them a reality.  I chose this role.  As I have said many times before, I chose it for my own benefit as well as Mary Ann’s benefit.  It does need to benefit her to accomplish the very thing that gives me satisfaction and creates meaning in my life, but when all is said and done, I am doing it for me.  I love her, I promised to live that love whatever came, I want to do things that help me feel good about myself.

I am also convinced that the quality of life does not depend so much on externals.  If we were traveling the globe together, we would be happy sometimes, sad other times, angry sometimes and at peace other times.  I am not so foolish as to suggest that people who are in horrible circumstances should buck up and be happy.  Even with our challenges, there are way more frightening realities out there.  I don’t know how I would feel or what I would say if things were worse than they are.  All I can say is that at the moment, I am convinced that I have as good a quality of life as I would have doing much of anything else, including playing all the time (which sounds boring to me).

There is one dimension to my situation that raises a question for me.  When I get up in the morning and look at our clear schedule, instead of longing for things to fill the day, I celebrate that I am not overwhelmed with too much to do.  For 40 years in the ministry, my average work week ranged from 60 to 70 hours.  I was on call (sickness, marriage and personal counseling, deaths) 24/7 to anywhere from a thousand to three or four thousand people when adding together members and their immediate circle of relatives and friends.  In the last years, while I did not take a directive approach, I was ultimately impacted and responsible for and responsible to a fairly large paid staff and a huge staff of volunteers.  Again, I did not relate directly to all of them, but by virtue of the role lived with the consequences of their choices.  The vast majority of time I had the joy of benefiting from their good choices.  That was not always the case.

In the last few years before I retired, Mary Ann’s needs consituted a full time job all the hours there was not a Volunteer with her.  There were regularly sleepless nights and always nights of interrupted sleep.  The job of Senior Pastor in a comparatively large congregation was exceedingly demanding in terms of time and personal stamina.

What I am wondering is if I might still be resting up from what had become an overwhelming load.  Even small tasks now can bring an almost PTSD sort of flashback to feeling overwhelmed.  Maybe I am settling in to having one focus of need since it is such a relief not to have loads of needs coming from numbers of directions.

One thing about the circumstances we are in, and the loss of choice in what I do minute by minute and hour by hour, is that I do not feel like a victim.  The circumstances are just that, objective realities that we must deal with.  Everyone has circumstances.  They just differ from one another.  These are ours.

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.

 

December 16, 2009

Shopping: Groceries and Christmas Gifts

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She knew exactly what she wanted us to make for Christmas dinner.  I had no idea what she was thinking until that moment in the grocery store.  I had asked a number of times what she thought we should make for Christmas dinner when the family gathered.  Each time I asked there was no response.  I made suggestions encouraging a yes or no answer, but there were no answers, neither yes nor no.

At the grocery, she said something out of the blue about making a list.  Then I think she said the word “salad.”  The interaction caught me off guard, since she seemed to be saying that we needed to list ingredients for something for Christmas.  We were in the throes of shopping, dealing with the person in the deli department slicing cold meat for us.

That conversation ceased for the moment.  When we were passing by the meat counter, on the way to get something on the other side of it, she stopped and said something about ham.  The options I had been suggesting as options in those earlier attempts at deciding what to prepare included things we have had in the past, a spiral cut Honey Baked Ham, a brisket, turkey, even a take out Prime Rib special from a local restaurant I had just seen.  Through some asking and answering it became clear that she was talking about ham steaks.

We got two large ham steaks.  Then she said something about grapes.  Finally she said “Grape Salad.”  That is a very tasty salad that again had never been mentioned in the many times I asked about Christmas dinner.  I had gotten only complete silence in response.

What apparently was happening is what I remember Thomas Graboys talking about in his book, Life in the Balance.  Mary Ann seemed to have had conversations in her mind that never included any words coming out of her mouth.  There have been times that she seemed convinced that she had said something, or we had talked about something when there had never been any spoken words.

Occasionally, Mary Ann has seemed to blur the line between dreams and reality, convinced that there was an interaction, a conversation about something, providing information that sounded as if is was the matter of fact recounting of something someone had told her.  What complicates things is that sometimes she is remembering absolutely perfectly something that did happen, was said, something I either wasn’t around to hear, or simply forgot.

On the positive side, it forces me to listen to her without dismissing what she says immediately even if it sounds bizarre.  It may be true.  It may not be true.  On the negative side, I am always pretty unsure and often frustrated trying to figure out which is which.

Mary Ann has not been able to participate much in the shopping for Christmas gifts.  I have gotten lists or thought of or seen something in most cases.  There was one item she remembered for someone, something mentioned to her when I was not around.  We got it.  I am not sure if it is a memory of a converation in a dream or a real one.  In this case, I am fairly confident it is something she is remembering from a real conversation.  I will find out when the presents are opened this Sunday, when we celebrate an early Christmas.

I do have to admit that while sometimes pretty frustrating, it is not boring around here.  There are often surprises, sometimes pleasant ones, sometimes not.  I suppose a couple of days of boring might be okay, as long as there was a good night’s sleep included.

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.

 

December 14, 2009

Christmas Preparations

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , |
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I just forgot!  I actually forgot about the Christmas tree.  I am a Pastor, how could that happen?  It is not that I forgot about Christmas.  I just forgot about the tree business.

Up until yesterday, the thought had not crossed my mind that there was something missing in our plans for Christmas.  We have been shopping.  Plans are made for the family gathering and celebrating Christmas on Sunday, the 20th, since that is really the only convenient time for our crew to get together.  (I have absolutely no idea what we will eat that day.)

I have even done the massive decorating of the outside of the house.  The decorations are unbelievably dramatic and terribly time-consuming to put up.  I will give you the details of how the decorating of the outside of our house is done.  First I open the garage door.  Then I walk over to the shelves in the garage and take down a box.  From that box I retrieve two artificial wreaths, each with a red bow on the bottom.  I take the wreaths outside and gently place one around each of the sconces on either side of the garage door.  What an undertaking!!! I am exhausted just thinking about it.

I feel like Pastor Scrooge when I drive through the neighborhoods to look at all the outdoor lights decorating houses and yards and then drive up to our house afterward.  Mary Ann would have loved having outdoor lights.  I just couldn’t bring myself to do it.  It is not some sort of theological statement about the real meaning of Christmas versus the decorations.  I am fine with people doing whatever brings them joy as they celebrate the holiday season.

I suspect that part of the reason I have not gotten into much in the way of elaborate Christmas Decorations is that before I retired, this was pretty much the single most demanding time of the year.  Admittedly, Holy Week and Easter are up there with it.  I was so focused on work, and so overwhelmed with all the preparations that I could not muster the motivation to carve out time for decorating the house.  Some of it is that I am far too easily frustrated when trying to take on new tasks and figure out what to do and how to do it.  I needed no added stress at such a busy time.

I don’t really know what other pastors do.  I suspect we are as varied as the general population in the area of decorating the house for the holidays.

We did always put up a tree and do some indoor decorating.  Mary Ann saw to that.  She did not say anything about the tree this year, and I just didn’t think of it.  Now in case someone reading this is getting depressed for us about the tree and indoor decorations.  Now that I remembered, the tree is up.  It has no lights or decorations yet, but it is up.  There are a few things on the mantle.

I have to admit that the motivation for getting the tree up is the fact that our Children and Grandchildren will be here next Sunday.  I suspect they would all be bummed if there were no tree.  Having talked with other folks our age and older, it seems that I am not alone in the lack of interest in putting up the tree.  Mary Ann, on the other hand, would probably not tolerate going through the Christmas season with no tree.  She has always loved the lights and ornaments.  Many years ago we put tinsel on the tree each year.  We had the classic difference in technique.  I would meticulously lay each strand of tinsel over the branches, and Mary Ann would toss handfuls of tinsel on to the tree.  It is a marvel we will be married 44years on Friday.

Mary Ann’s day today included a lot of sleep.  We both slept in.  It was about 10am before we woke (other than the commode trips). I got her dressed, gave her pills and breakfast.  There was an urgent trip to the bathroom, including a couple of substantial fainting spells.  Then when I took her out to the Living Room, she asked to turn around and go back to the bedroom to lie down.  She napped for a couple of hours.

This afternoon after she got up and ate a sandwich, I got the tree up from downstairs.  Then all of a sudden, she got up and headed off.  When I asked where she was going, she said to the kitchen to make something.  I became frustrated with the fact that I was mid stream in getting the tree up, and her actions were demanding that I stop, leave the tree parts in the box on the Living Room floor and help her in the kitchen. I insisted that she give me time at least to put the tree together and get the box out of the Living Room.  I had already moved the furniture to accommodate the tree in our small town home.

As soon as she said that she was going to go to the kitchen to make something, I knew what it was.  The last time we were at the grocery, Mary Ann insisted on getting some of what we have come to call “Lisa’s Cereal.”  In fact we phoned Daughter Lisa while standing in the cereal aisle at the store.  We disagreed on what cereal it was.  We bought two boxes of Quaker Oats Squares.  There is a wonderful pecan crunch made with the cereal, pecans, brown sugar, butter, Karo syrup, vanilla and baking soda.

After the tree was put together, we headed into the kitchen and made the pecan crunch.  Mary Ann sat at the little ice cream table that resides in the kitchen eating area, while I followed the recipe, without ad libbing, and prepared that decadent and very tasty snack.

After church tonight, we picked up some food that Mary had prepared for us, Lavonna’s beans, a couple of containers of spaghetti, and Mary Ann’s favorite green Jello with cool whip and cottage cheese.

Mary Ann is in bed, but the signs are that this will not be a good night for sleep.  I hope I am wrong about that.

 

December 13, 2009

Granddaughter Shines!

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She watched the director, knew the music, sang with her mouth open wide just as she should, and brought some joy to her Grandparents (and, of course, her parents).  This Grandpa loved every minute, since singing was in the center of my life during most of my first two decades of life, and has remained a love until now.

We drove a little over an hour to the church at which Chloe’s choir performed.  Her other Grandparents made a trip more than twice that length to come to the concert.  The choir is sponsored by the University of Missouri, Kansas City (UMKC). Auditions are required to be able to sing with the choir.

Then logistics needed to accomplish the day’s activities were not always easy.  Churches try hard to be accessible for the handicapped, but old buildings often will simply not cooperate in the task of becoming welcoming.  We thought it wise to make a bathroom stop before the concert.  There was an accessible bathroom inside the ground floor doors near a handicapped parking spot.  The doors were locked to force the attendees to use a door that would allow entry to the room from the back.

Gratefully, we got the attention of then attendant who let us in and waited while we used the restroom.  The need to change the pad due to incontinence resulted in removing shoes that are difficult to get on and off.  We used an elevator to get to the floor on which the concert would be held.  As a result of the time spent in the bathroom, we barely made it in through a door in the front of the room, the same door through which the choirs entered.  We were directed to the indentation in the pews for wheel chairs, but all the seats around it were filled.  Gratefully, a family offered to split up with Dad moving the pew behind so that I could be right behind Mary Ann.

After the concert, to get to the reception area, we had to return the same way, take the elevator to the lower level, pass through the kitchen, and then arrive at the reception area.

Before the concert, we ate out together.  The handicapped parking spaces were a block from the restuarant.  To get to the booth, we had to go through the serving area.  Booths are always a bit of a challenge.  Ordering was pretty difficult, as it always is, since a compromised executive function of the brain is among the first of the problems to emerge with Parkinson’s Disease Dementia (Lewy Body Dementia).  She really struggled to track and then decide what to order.

Again, getting the food to her mouth, coordinating the straw so that she could drink did not go very well.  Then twice, she just fell to the side. [See an earlier post on leaning to the left.]  After the second time, I moved from sitting in the chair that had been added for me, to sitting right next to her on the booth bench, with my body supporting hers.  When we ate at BoBo’s earlier in the week, she had fallen to the right twice while sitting in the booth.

After the concert we had a nice time with the kids at their house, along with Daughter-in-Law Becky’s parents.  Mary Ann was sitting off to the side a bit since she needs a hard, straight-backed chair to keep from being trapped in the chair, unable to assist when she needs to get up.  I stood near her so that the conversation would include her, even though she said only a few words.

I need to ask the kids to confirm, but today seemed to indicate that Mary Ann has lost ground in the recent past.  I am beginning to accept the possibility that this is just the way it is now — that we have moved to a new normal.

When we left their house, we headed down to see the Plaza Lights.  Kansas City is a beautiful place for the most part.  The Country Club Plaza, built in the 30’s with all the buildings done in Spanish Architecture, is a wonderful spot.  There is a huge fountain on one end.  There are parking garages built with the same architecture.  There are horse drawn carriages, people walking the sidewalks.  There are lots of exclusive stores, most having very expensive merchandise.  The lights outline all the buildings and have been put up from Thanksgiving through Christmas for many decades.

We lived in an area a mile or so south of the Plaza for fifteen years.  Our children grew up there.  It felt wonderful tonight to be driving those same streets that had become so familiar.  I realized how much I miss the feel of a metropolitan area that has people walking about, families, young people, folks out walking their dogs, local ethnic restaurants, curved streets, tall trees everywhere.  I guess we just fell in love with Kansas City during those years there.  As we drove, Mary Ann admitted that she would still like to move back to KC.  There are a number of reasons that pretty much eliminate that option, but this is not the first time she has said that.  One of the reasons moving back is unlilkely is that the house we bought for $22,500 in 1972 was on the market a couple of years ago, listed at $310.000.  What is it they say, “location, location, location.”

All in all, today was a good day.  While there were signs of Mary Ann’s apparent decline, the joy of getting out, hearing Chloe sing, enjoying conversation, and seeing beautiful Christmas lights more than compensated.

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.

 

December 9, 2009

Dental Hygiene

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In the past, Mary Ann would do almost anything to avoid going to the dentist.  Dr. Ron when we were in Oklahoma City and Dr. Bob here have had a gentleness that won her over.  She goes four times a year now, without balking.

Four times a year may seem more often than necessary.  During the years we had dental insurance, it only paid for two of the four times each year.  Why four?  Two reasons: 1. lack of manual dexterity; 2. lack of adequate caregiving.  This is among the many things of which I am not proud.  I just can’t bring myself to do the mouth care for Mary Ann that she cannot do herself.  I have no excuse.  I do a reasonable job of a number of other things, but not that.  Going to the Dental Hygienist four times a year helps compensate for the lack of good care at home.

As is so often the case, medication that does much good in one area of health care can create problems in another area.  The combination of Plavix and Aspirin helps protect against another stroke as bits of plaque can break loose from the lesion on the wall of one of Mary Ann’s carotid arteries.  That combination of meds thins her blood to the extent that by the time the Dental Hygienist is done, there is much bleeding.

After each cleaning of her teeth, we put a Chux (absorbent pad lined with plastic) on her pillow so that the blood from her gums will not stain the bedding.  We learned to do that the hard way, as is so with most of the things we have learned over the years.

There was a point at which we were looking at multple thousands of dollars in potential work on her teeth.  Dr. Bob has managed to keep her mouth in pretty good shape without doing major work.  The prospect of many hours in the dentist chair with the vacillations between stiffness and involuntary movements did not make major dental work an acceptable option.  There were a couple of extractions along the line.  Surprisingly, Mary Ann found the extractions easier than having crowns done.  She was surprised at how fast she was in and out of the chair when the extractions were done.  She had no problems associated with those procedures.

Actually, the dental issues that come with Parkinson’s are seldom mentioned.  We have tried a number of electric toothbrushes.  Mary Ann has a very small mouth providing little room for normal sized brushes.  We have often gotten children’s toothbrushes.  Even the smallest head for an electric brush does not seem to work for her. The manual dexterity needed for brushing teeth is just not there.

Along with many other diseases, it is often problems that are not directly caused by the disease process itself that come to be the most troubling as time goes by.  They are things that are not symptoms of the disease but rather consequences of its long time presence.  As an example, I am watching the skin on the underside of Mary Ann’s forearms.  She spends most of her days in the transfer chair, with her arms resting on the arms of the chair.  I am watching to be sure that the skin under her arms does not begin to break down.  The impact on her dexterity and spatial judgment affects the ease of eating and drinking, making her vulnerable to weight loss and dehydration.  Our Cardiologist feels that the heart issues were a result of the intense dyskinetic movements that are a side effect of the primary Parkinson’s Medication after many years of taking it.

When a person becomes a Caregiver, it is not enough to listen to and read about the disease itself and its symptoms.  It is interacting with others, in support groups, online communities, talking with other Caregivers, reading what has been written by people who have either had the disease or cared for someone with the disease that provides the full story.

I had the advantage of being in a profession that took me into hospital rooms often many times a week. Folks made a point of sharing their medical problems with me as I ministered to them.  As I looked and listened, I learned much of what has helped me tune in to Mary Ann’s problems.  I learned how to talk with and listen to the medical professionals, making it easier to ask the right questions and understand the answers.

For now, I just hope the gums heal and the bleeding subsides.  It is surprising how helpful it is to use a cold substance to ease mouth discomfort after a visit to the dentist.  A chocolate shake from Sonic did the trick this time.  Did you know that Sonic just switched to using real ice cream in their dessert specialties (shakes and sundaes and blasts)?  Does that news leave you also wondering what it was they used to make those treats before they switched to real ice cream?

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.

 

December 7, 2009

Losing Ground or Side Effects?

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Mary Ann has been noticeably weaker lately.  Of course, we have been trying to regain ground after what was lost in the three day hospital stay.  It seems as if the last few days have taken us the wrong direction.

The question is, what is the cause of this latest decline, albeit a comparatively small decline.  Is it the result of cutting back on the Midodrine and adding the Mestinon to her medication regimen a few days ago?  Check the last few posts on this blog for an explanation of what those meds do and why she is taking them.

One of the folks in the online Caregiver Spouses group mentioned weakness as a potential side effect of the Mestinon.  I am trying to get more information on that possibility.

Another side effect of the Mestinon is diarrhea.  There have been quite a number of trips to the bathroom that might be caused by the medicine.  The information sheet from the pharmacy suggests that this and other potential side effects may subside after a time.  I am hoping that her intestines will settle, so that she can continue the medicine.  It is not certain yet that the new medicine is having the sought for impact on the problem.

If we have simply lost ground in the battle against the Parkinson’s Disease itself, the Parkinson’s Disease Dementia (a Lewy Body Dementia) and the resulting Autonomic Nervous System dysfunctions, we will handle it and incorporate it into a new version of normal.  If, as the timing suggests, the medications are mostly the cause of the decline, we can do some more tweaking, adding, subtracting, or whatever has the potential of helping us regain lost ground.

For now, I’m tired. She seems to be sleeping.  I think I will try that out too.

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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