December 30, 2009

Second Day of Escape from Cabin

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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We got out of the house again today!  It just feels good to be out in the van running errands after so long stuck inside.  There was no nap again today.  I certainly hope in spite of that, there is more sleeping tonight than there was last night.  It was snack time at 3:15am. 

We ran errands and ended up at the grocery again today.   Mary Ann likes being at the store.  It seems to be one of the most engaging and entertaining activities for her.  It frustrates her that she is no longer the chief of food preparation and pantry stocking. 

Lunch was left over chinese from yesterday.   Supper was Chicken Tetrazini that was brought to us from church by the Parish Nurse for the freezer.  I cooked some fresh broccoli to add a veggie.  The Tetrazini tasted wonderful to both of us.  I am always fearful that anything from the freezer will not spark Mary Ann’s interest, but she loved this meal too. 

The Parish Nurse program at the church from which I retired has been one of the strongest ministries.  It is so strong because Margaret has made it so with God’s help.  She visits folks who are homebound regularly, taking vegetables from Glenn’s and her vegetable garden, flowers from their flower garden, leaves from their Maple tree in the fall, CD’s of the last Sunday’s church service, and from the church freezer she brings food that has been designated for use by the Parish Nurse.   The sense of community and support from church is vivid for those who receive her ministry and the ministry of those who assist her. 

Since there was no nap today, it helped that a Volunteer was scheduled for two and a half hours this evening.  I got out for a coffee refill.  I got to the liquor store to buy a half bottle of Asti Spumonti so that we can tie one on Thursday evening, New Year’s Eve.  That will happen when we eat cheese and crackers and toast the New Year at about 8:00pm.  It will be the New Year somewhere on the planet by then.  The worst part of it is that every year we do that, we have of the half bottle left to sit in the fridge for a while.   I guess we are not the rowdiest partiers around. 

The time the Volunteer was here gave me a chance to focus attention on the online Ignatian Retreat I have started.  This week’s activity is remembering the mental snapshots of those events from the past that impacted our formation.  This evening began the Teen and Young Adult reminiscences. 

Many of them related to the choirs I was in.  I perceived myself to be a non-entity in social terms at the large schools I attended.  I was utterly shocked when my name was suggested for President of the 104 member Sophomore Choir.  I got to serve as President and Student Conductor or four more choirs through high school and college before entering the Seminary.  Singing was at the very center of my life from Junior High through the end of the Seminary (8 years post high school).  Music has had a sustaining and nurturing presence in my life for all the years since.  It feeds my spirit in a way that allows me to continue doing what I am doing now. 

One of my most vivid memories is of the night when I was about fourteen years old that I decided to go in the ministry.  It was a very spiritual experience.   There was not magic nor were there voices from above, just some powerful mental conversation that seemed to reveal the Lord’s leading to the decision.  I am always suspect when someone says the Lord told them to do something.  It seems often to be an attempt to use the Lord to make people agree with something the person has decided is so.   The decision to go into the ministry was tested and reconsidered as other career options moved to center stage, one in Physics and the other in Choral Music. 

That memory confirms for me a decision-making process that, at least in terms of major decisions, has seemed to leave me completely secure in whatever I have chosen to do.  I have never regretted a major decision or second-guessed it.  Whether right or wrong I have given myself completely to whatever has followed each of those major choices.  I have not lost energy because I wondered if I was doing the right thing.  I may have lost energy for other reasons, but not because I doubted the choice I had made.  That has been the key to dealing with the challenges that come with full time Caregiving.  As those of you who read these posts know well, I have plenty of times of frustration with my role and my own limitations, but I do not question the decision to choose the role. 

The time in life that is the focus of today and tomorrow is the time during which Mary Ann and I met and, three and a half years later, married.  I had endured the typical rejection by the first couple of Junior High crushes.  I will say it certainly did not feel typical.  I met Mary Ann (having known her name since we grew up in the same church) the summer after my first year in college. 

Romantic love is, of course, very selfish.  I fell in love and found that a gaping hole in my insides was filled by that relationship.  I can only speak for my own feelings on the matter.  I do not actually know much about Mary Ann’s feelings at that time, or since then for that matter, since she holds her feelings close to the vest, as they say.   While we have had the usual ups and downs, the relationship has remained secure for these many years.  I feel no less in love with her than I did forty-four years ago.  Even the waste management duties have not changed that.  If anything, the feelings are deeper and more fully developed than when we began our life together.  The struggles of these last few years have drawn us closer.  All of that does not preclude our getting grumpy with each other, or our resenting each other when things are not going well for us.   It just puts the problem times into perspective as just a part of a strong and healthy relationship. 

The online retreat is providing lots of fodder for the task of finding meaning in the circumstances in which I am living as a Caregiver.  Finding  meaning in the Caregiving tranforms frustrating days into fulfilling days.

 

December 25, 2009

Christmas Blizzard

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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.

 

November 11, 2009

Wake up! Go to Sleep! Please!

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It was a night from Hell.  We have plenty of them.  I went to be early in hopes that my presence would help her sleep.  Not so.  She wanted to go home more than once.  Often she would get up and when I asked, admit that she didn’t know why she had gotten up.  Once she woke up and said she had swallowed a snake.  I have no idea from where that thought came.

It went on through the night.  Once there were only seven minutes between times of getting up with some need.  The next one was twelve minutes.  Then came a couple about twenty minutes apart.  I am just tired enough that I went back to sleep during each of those short times, only to be wakened again.  I am not sure what words to say to communicate the level of frustration with that behavior.

One of the times she got up, she agreed to go to the table and eat some applesauce.  We started toward the dining room, and soon it was apparent that she just couldn’t walk well enough to make it there.  I asked her not to move, while I ran a few feet to get the transfer chair.  Of course she fell.  My level of frustration was enough that while I was complaining about her not staying still, instead of patiently working out how to get her off the floor in a way that was safe for me and her, I just picked her up off the floor and seated her in the chair.  Yes, she is only a little over 120 pounds.  No, a small 66 year old man with a family history of back issues should not try to pick up someone from the floor, someone who is not able to help in the process, essentially dead weight.

While it hurts, at the moment (six or seven hours later), it is not excruciating.  I am hoping only minor damage was done and that Advil, ice and a call to Chiropractor Tim will eventually take care of it.

Last night, all I wanted was for her to go to sleep!  She got up early again.  I just insisted that she stay in bed so that I could get another hour of sleep.  Gratefully, she did stay in bed for a while.

When she got up, things were pretty difficult.  I, of course, was not in a very pleasant frame of mind having been up and down every few minutes during most of the night.  She was able to get some of her food eaten by herself.  After breakfast she sat by the television in her PJ’s.  She was in popping up mode.  While at the moment, she is not fainting, her weakness and balance are making her vulnerable to falls.  I got a phone call.  Just as I got into the conversation, she hopped up and headed across the room.  I was frustrated by the timing of it, but after determining it was a bathroom need that precipitated it, I got off the phone and got her into the bathroom and seated.

I have not mentioned this much in the last three days, but there has been intestinal activity verging on diarrhea.  Sunday morning when I was gone, she had some major activity.  That activity required a later cleanup that involved removing the toilet seat, taking it to the large basin I had installed in the basement storage area for things like this, soaking the toilet seat in water with lots of Clorox Bleach, scrubbing the hinges with a toothbrush, rinsing, drying, disinfecting the stool itself and replacing the toilet seat.  This is all taught in Caregiver school.

The good news is that the activity does not come often.  It is just takes some extra effort to keep her and whatever else clean.  We have dealt with much worse in this area.  This morning’s trip to the bathroom was not an easy one.

When she returned to the living room, the popping up continued.  She was almost always getting up to look around at the floor.  I don’t know exactly what she was seeing, but it was some sort of mess that needed cleaning up.  Just going into the kitchen to get a bowl of cereal had to be done in short segments of time, often less than a minute in length so that I could check on her and get her seated again.

I had not yet gotten my morning shower.  I could not trust her to stay seated for the ten to fifteen minutes it takes for me to get ready.  She often agrees that she will stay seated, but pretty much does not do so.  I finally realized that the only way I was going to get ready myself, would be for her to be napping.

There is such an conflict of wants and needs that converge on this simple process.  I want her to stay awake during the day and sleep at night.  I want her to be sleeping even during the day so that I am not dealing with the popping up, the constant needs, the hallucinations, not knowing what will come next.  I should keep her up in the daytime, but when she moves into her need-for-sleep mode, she ends up hanging her head and sleeping in her chair, if not in her bed. There is a sense of relief when she is sleeping during the daytime hours, but a dread for the horribly frustrating nights that come when she can’t sleep then.

I suppose I could sleep during the day while she is sleeping.  I don’t want to shift days and nights for both of us.  I want to be tired enough at bed time that I can go to bed and sleep, if she will allow it.  When she is asleep, I have the freedom to do things that nurture my own well-being both for my own sake and so that I don’t lose the capacity to care for her.  These posts have been long and detailed lately because she is sleeping enough during the day that I am free to write.  These posts have been long and detailed these last days since we are almost entirely homebound now and the task is frustrating enough that I need the outlet of writing these posts as therapy.

Then there is the question, how is Mary Ann dealing with this new place in our experience.  She is stuck with the frustration of not having the mobility and mental acuity she has had, and she is stuck with Grumpy Caregiver who gets frustrated with things she cannot control.  She vacillates between days when she is exhausted and just wants to sleep, and nights when she can’t sleep, wants to be up while the person on whom she depends is scolding her and insisting she stay in bed.  She needs food but often not what is in front of her.  She hates the feeling of needing to be fed but often needs to be fed.  She wants to do things for herself but is constantly being asked to sit down, being reminded that she can’t do them.

I wish I were better at this caregiving task.  On the positive side, I think that most of the time I act in ways that are caring and helpful and affirming of who she is.  I try to treat her with respect, recognizing that my words are not always respectful when I am frustrated with some difficult behavior that seems still to be under her control (probably most often a result of the disease more than her willfulness).  I work hard at keeping her neat, hair washed, dressed appropriately, the house in order, beds made, kitchen in order.  I work very hard at determining what she needs or wants and if it is possible, trying to provide whatever it is.  With that said, in fairness, my assessment is based on who I want to be, not necessarily who I am in her eyes.  In the area of this sort of self-awareness, my propensity to feel guilty when I have been unkind provides some internal metrics.  My self-centeredness drives me to do things that allow me to feel good about myself.  My batting average in that task is probably just that, painfully average.

Back to our day: When med time came after she had been sleeping for a couple of hours, I decided not to make yesterday’s mistake.  After I took her to the bathroom, she stayed up for us to head to Glory Day’s Pizza to bring a couple of slices home for her (lunch and supper).  Her mobility was very poor, and she still would not open her eyes, so the trip out to the car and back afterward was pretty difficult.

She insisted on eating the slice of pizza without help.  She only managed to eat the topping (cheese only) from a little more than half of the one piece.  Then she was done.  After refusing once, she finally agreed to a dish of ice cream.  She is about five pounds lighter on our scale than she was the last time she weighed herself before the trip and the hospital.  She has been eating so little it is no wonder.  When I took her to the bathroom after the pizza, as I was getting her clothes down so that she could sit on the stool, she stopped me, asking what I was doing.  She thought we were still in the dining room.

At about 4:45pm, she wanted to get her bed clothes on and get into bed. She got up again when a paid worker from Home Instead to stay for a few hours while I honored a commitment that was important to me.   She was still up when I returned and went to bed at about 9:30pm.  Let’s hope for some sleep tonight.

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

 

October 29, 2009

Fourth Day: Still Doing Well in Hot Springs

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Finally!  Chocolate Wednesday!!

Yes, it began with a breakfast sundae.  It was not quite as decadent as it sounds.  The first layer was yogurt with home made granola mixed in.  Then came the strawberries, whipped cream and chocolate drizzled over the top.

Next came the plate with herb roasted potatoes, sausage patties and a breakfast strudel, which is a pastry shell filled with an egg and veggie center.  Who would have imagined such a thing?  It was wonderful!

The highlight was the Innkeeper’s 4pm table of treats.  The wines are always well chosen, red and white each day.  There were Halloween cookies, crackers and three kinds of cheese —  then, of course, the chocolate covered strawberries.  The chocolate was unusually rich and tasty.  The Godiva Chocolate Liquor with a touch of caramel was too wonderful.  It is good that liquor glasses are tiny.

The timing was perfect, since we had enjoyed a light midday meal a couple of hours earlier from the new in-house menu.  A chicken salad sandwich on a toasted croissant for Mary Ann, and bowl of tomato basil soup and a salad of field greens with a balsamic vinaigrette dressing for me.  It was served to us in the dining room where we could look out the windows and the gardens and the lake as we had a quiet meal.  The food here has yet to disappoint.

As we looked out the window, Mary Ann called my attention to the surface of the lake.  I have heard and used the word shimmering many times.  I now understand more fully what it means.  I guess it was the angle of the sun that combined with just the right movement of the water that produced almost blindingly bright sparkles on the water — as in diamonds, real ones.

Today was a spectacularly beautiful, warm and sunny day.  We sat for a while this afternoon on the patio by the fountain.  Mary Ann began reading a book she picked up at a Walgreen’s yesterday afternoon.  I read a bit from the Spirituality journal called Weavings.  Most of the time I just sat and soaked in the setting.

I had just a moment’s realization of the significance of our having this time sitting together.  There was a flash to a time that may come when sitting next to her will no longer be an option, when I may be sitting alone.  It was not a deep and sad feeling as much as it was an appreciation of what we are now able to enjoy.

As she read, I took some time to walk through the garden on the stone path that wound through the blooming Azaleas, going across stone bridges over the stream created by the fountain and waterfalls.  Some wonderfully colorful butterflies moved from blossom to blossom, a Monarch, a black Swallowtail of some sort, a yellow Sulfur butterfly.  There were lots of bees wandering in and out of the blossoms.  When I walked along the lake, there was a turtle  hovering at the wall.  It was just a very pleasant afternoon.

We have enjoyed meeting lots of folks.  One couple mentioned that their daughter’s wedding was just two weeks earlier.  She was married in South Carolina.  I asked where in South Car0lina she had been married.  They said something about Cliffs and Glassy, and we filled in the blanks.  Their daughter was married in the same beautiful little chapel in the mountains north of Greenville, South Carolina, in which our Daughter, Lisa, was married.

It has pretty much never failed that asking other residents at the B&B where they are from has initiated a conversation that produced some connection or commonality.  There are people here from a variety of places, some still working and attending conferences here in town, some retired.

If there was no other common ground, often the mention of being a retired pastor began the path leading to the discovery of something in common, or something of mutual interest.  Two are active pastors, another is the daughter of a pastor, another has a brother who is a Franciscan priest (just switched to Diocesan for the sake of getting a pension), one plays guitar at his large Cowboy Church in South Texas.  One shared a tragic story of the death of her Son-in-Law when her daughter was pregnant with their first child.  It is a reminder of the depth and breadth of the experiences that lie behind the faces of those we encounter.   It is good to be in a setting in which we are all moving slowly enough that we can take time to make some discoveries that allow us into each other’s lives if only for a moment.

Mary Ann is down for the night (I hope).  We will eat breakfast in the morning here, load the van and head for Eureka Springs to stay the night so that we won’t have too long a trip back.  There are storms predicted for the day both here and in Eureka Springs.  We will take our time and stop whenever we need to.

Again, we are grateful for some good days.  We can put them in the bank.  Tomorrow will bring whatever it will.

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.

 

October 28, 2009

Third Day: Still Doing Well – in Hot Springs

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Hooray, the we saw light from the shining ball of fire in the sky late this afternoon.  We did not see the ball, but discernible evidence of its presence.

This evening after dark, I sat on the patio again by the waterfall/fountain/pond, looking at the bright moon and nearby planet.  Am I a wildlife magnet???  Maybe five feet away from me, a small possum just wandered by from the shrubs on one side of the water feature, across the cement patio at its edge, and headed on through the shrubs on the other side of the water feature, showing himself at various times as he lumbered along.  I guess the sound of the waterfall distracted him and it was dark enough that he just didn’ t notice me.

We had a good day.  It started out with the Lookout Blend of a really nice, medium roast coffee (clearly a certain percent of dark roast beans in the blend).  Next came the juice, again a blend — equal parts cranberry and orange juice.

That was followed by roasted plums with creme fraiche.  What a wonderfully sweet treat it was.  There were ribbons of caramel that cradled the plums before the creme fraiche was poured over them.  Both of us left those dishes ready for the next use — no washing needed since there was nothing left in them.  We refrained from putting the dishes to our mouths and licking them clean.  We didn’t want to give Kansas a bad name.

Following that came the plate with a large slice of warm veggie frittata with a very tasty salsa with which to add still more flavor.  There were sections of polish sausage sitting on the plate next to the frittata.  They were complemented by freshly baked hot biscuits with butter and three kinds of locally made jam to be slathered on.

It is just plain cruel to describe in such detail the lavish breakfast we had today, but then I never claimed to be perfect.  This is actually just an attempt at helping each of you understand the commandment about coveting so that you can do a better job of avoiding it.  Aren’t you grateful?

After relaxing for a time here, checking out together the library and reading room and sitting area in the large sun room, spending some time on the patio in spite of the chill of the cloudy day, we headed into Hot Springs.

As we neared the main part of town, it had been long enough since breakfast that we thought we might eat a little something.  Mary Ann remembered from our last trip a little European style deli that we had visited.  I had a vague memory of where it was, but she remembered the exact name of it, Cafe 1217 (its street address is 1217).  With a little help from our GPS unit (Helga) we found it.

There are glass cases there with the various food items in view.  There is a dessert case, a veggie section, salad section and entree section.  The ordering is done at the counter.  Names are called and patrons come to the counter to get a heavy ceramic plate with the food items on it.

We ordered one piece of Honey BBQ Salmon which we split.  We each picked a side to accompany it.  Mary Ann picked the Caramelized Apricot Sweet Potatoes, and I picked the Grilled Ratatouille Vegetable Salad.  The cases were filled with foods that were out of the ordinary.  Apparently, the menu changes each month.  There were autographed pictures of a number of famous folks who had eaten there.

Then we spent almost an hour in one of the better art galleries in the area.  Hot Springs is one of the top five communities in the nation known for the fine arts.  In describing all the various events, the owner talked about the film festival, drawing thousands.  Then he described the music festival, that brought people from all over the world.  A woodwind ensemble practiced in the gallery.  The acoustics are alive in that old building with a ceiling two stories high, hard surfaces everywhere throwing the sound back on itself.  Hearing him describe the experience stirred memories of singing in old cathedrals in Europe over forty years ago on a choir tour.

The art work was moderately priced for good art.  The prices for the same pieces would have been much higher in other places in the country, but they were still in the thousands of dollars.

One artist, Randall Good, has a close connection with the Blue Moon Gallery in Hot Springs.  His work is powerful.  He was commissioned about eight years ago to do fourteen large paintings of the Stations of the Cross.  The result of the years of work was impressive.  The folks at the gallery explained the process by which he made the medium on which the paintings would be done, with the medium becoming a part of the final piece.

After hearing descriptions of the process that has brought each piece to completion and his creative journey as it is unfolding, it is apparent just how complex a painting can be.  In years past, when I looked at art pieces, I saw them as pictures to be observed.  Hearing so much about the living dynamics of each piece gives me new eyes with which to see.

It has helped my ability to experience more when I view an art piece to have had a gifted friend named Milt Heinrich, who has served for many years as the head of the Art Department at Dana College in Blair, Nebraska.  He also served for many years as part of the Arts Council [may not be the correct designation] for the state of Nebraska.  He was commissioned to do the huge wall sculpture at one end of the Omaha Airport.

Access to Randall Good’s web site can be found by Googling the Blue Moon Art Gallery in Hot Springs, Arkansas.  There can be found is a link to his site.

It is so odd that I have come to enjoy the visual arts.  I know virtually nothing about great art.  I am one of five children.  Three of us are gifted in the ability to draw beautifully.  Two of us are Pastors.  Oh well — same gene pool.  I guess Dick and I just stayed in the shallow end.

After the art galleries (we visited a second one for a time), we headed back to the B&B.  There we were, of course, greeted by freshly baked coffee cake and cookies, red wine, white wine, cheese and crackers — the Innkeepers daily 4pm offering.

Mary Ann is settled in bed, hopefully sleeping soundly.  While we don’t have specific plans for tomorrow, it is Chocolate Wednesday!  Wait till I tell you about the breakfast sundaes!

That is for tomorrow.

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.

 

October 15, 2009

Can I Keep her Awake Another Day? Should I?

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I think not!  We made it through today, but it took much coaxing and insisting and endless activity. She did not sleep very well again last night.  There were about as many trips to the commode, changes in position, drinks of water as have been so for the last few nights.  She was up at 7am, laid back down while I showered and got up for the day immediately thereafter.

I got her hair washed, got her dressed and delivered her to the circle meeting well before it was time to begin.  On the way home after the meeting, I suggested getting a movie or two for the late afternoon or evening to keep her awake.  When we got home she wanted to nap.  Since it was lunch time, I was able to keep her up for that.  Then she wanted me to leave her home while I took the car in for an oil change.  I thought about doing so, but since she was still up we just got in the car and headed to the Honda place.

When we got home after that, the television kept her attention for a while.  We ate supper,  watched one of the movies, and now she has just gone to bed.  My goal has been to keep her up during the day until finally she will sleep soundly through the night (with just a few commode trips) and we can return to a more manageable sleep pattern leaving both of us better rested and reducing the hallucinations.

Colleen commented on last night’s post: “Your comment about sleep reminded me of children.  The more tired they are, the more hyper they get, and the less likely they are to sleep.”  Before I read that comment, I had decided that tomorrow, if she wants to nap, I will not try to keep her up and busy, but just let her sleep.  Colleen’s observation may very well explain what is happening.  Keeping her up may actually be making it harder for her to sleep through the night. It is far too soon to determine if this will be a sleepless night or a sleep-filled night.

By the way, supper tonight was a treat for both of us, even though I did the cooking.  It was a meal simple enough even for me to prepare. When Edie came to stay with Mary Ann on Sunday (providing a meal, as she always does), she mentioned that they had just picked many green tomatoes.  We sent with her Mary Ann’s Mom’s recipe for green tomato relish.  I mentioned that it made the best glaze for a ham known to humankind.

Guess what was delivered to our house last evening while I was at the local Audubon Society presentation?  There were a couple of jars of freshly made green tomato relish and a huge slice of ham about an inch thick, ready to be cooked.  I wrapped a couple of sweet potatoes in foil and baked them until they were soft and moist, ready for the butter and brown sugar, spread the relish on the ham and broiled it (per instructions on the wrapper), opened and heated a can of peas, and the feast began!  The only moment of concern came when the relish under the broiler began to smoke.  I had visions of alarms sounding and fire trucks gathering.  Gratefully, the newly cleaned smoke detector was no longer too sensitive [see earlier post].

The movie we rented was The Soloist.  It was is engaging account of someone who managed against seemingly insurmountable odds to make music.  While our situation is far less dramatic and hardly compares to what the character in this true story encountered and, apparently, still does, the movie encourages the idea of living meaningfully, no matter what.  That is precisely the goal toward which we are drawn.

On that note, the Alien presence from planet Pedometer Prime had its way with me again.  I walked once outside at Cedarcrest and once in the mall while Mary Ann was at her Circle meeting.  Then came a powerful attack by the Alien.  Before it was over, I committed to a five week exercise and weight reduction program at Rebound Physical Therapy.  This lack of sleep must be getting to me also.  My resistance is down.  There is confusion from synapses that have not had time to connect as they do during that deep sleep that is so important to us.  Have I finally simply gone completely mad!!

One last note:  She has already been up for a couple of drinks of water, saltine crackers and a snack-sized container of applesauce.  Is it possible that she can have still another restless night?  The answer to that question will come soon enough.

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.

 

October 13, 2009

Change has Domino Effect for Good or for Bad

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
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Danger! Danger!  Alien attacks again.  This Alien presence from planet Pedometer Prime has had his way with me again.  I was out and walking some time before 7:30am.  I had no idea there was a 7am on Monday.  I didn’t think they started measuring time until at least 9am.

The Alien and Mary Ann were in collusion.  As suspected, sleep did not go quite as well last night after a daytime nap yesterday and earlier to bed than usual.  The consequence was that she woke up at 6:45am in need of food and ready to get up.  Do you see how this played into the Alien’s hands?  After eating a single serving snack of apple sauce, she was willing to lie down again while I went out to walk for twenty minutes or so.  It seemed best not to start meds too early, since the two hour increments of medicine would end to early in the afternoon.  I put the Lifeline pendant around her neck, got water for her, the television remote for the bedroom TV and headed out.

Now, of course, I am feeling energized and positive.  You see how this Alien presence weaves his subversive plot?  Here I am writing this post and, again, it is morning — Monday morning!  I guess to be honest for those of us who are retired, there isn’t a Monday.  In fact we bought a clock from Radio Shack that shows the day of the week so that we would know what day we are in.

As I thought about Mary Ann’s increased ability to walk and the better nights, the domino effect popped into my mind.  The better nights have encouraged a change in my pattern of activity.  It seems more possible to do an exercise walk.  I am more rested and, as a result, more willing to get up in the morning to get in the walk. The walk perks up my metabolism, providing the stamina to write the post earlier in the day.

In addition, by getting up earlier, I am more ready and able to get to bed earlier.  Since I am writing the post earlier in the day, I can use the time in the evening after Mary Ann goes to bed for listening to music, or engaging in a Taizé devotion, following a reading by Fr. Ed Hayes.  The latest readings have come from his book, Prayers for a Planetary Pilgrim.

All of the above has been about me, the Caregiver.  For Mary Ann, the good news is that she has seen little of Grumpy Caregiver and more of the patient and helpful Caregiver.  My confidence in her ability to walk has freed her from my constant presence, in her face, asking her to sit back down.  She has fallen on occasion, but still not often by comparison to the past. My confidence in her ability to walk has given me the feeling of being untethered.  That has felt  remarkably freeing.

It fascinates me just how interrelated all these circumstances are.  One domino falls, touches the next.  That one hits another, that one bumps one more.  Sometimes one small change can grow into something far more substantial.

I have no illusions.  Just as the dominoes can fall for good, they can fall for bad.  The hallucinations have begun to return.  Yesterday morning, there was a Raccoon in her bed.  When we drove into the garage after church last evening, Mary Ann in a matter of fact tone, noted that they hadn’t thrown away the quills.  I asked to what she was referring.  She answered, the Porcupine quills.  She saw them distinctly.  When I got out of the car, turned on the lights in the garage and helped her out of the car, she saw that they were gone.  She was, however sure there were some in the house.  When we got in, she went into the bedroom and looked around.  She didn’t comment further on the matter. Hallucinations, of course, can interfere with her sleep and keep her up for hours.

Since she got up early this morning, she may get tired and need a nap.  A nap might impact her ability to sleep.  The domino effect could take us back to more troublesome times.

To try to avoid that path, we have made a commitment to pick up a friend, head out for lunch and a ride.  My hope is that we can keep active until Oprah.  Once that time comes, she generally stays awake until bedtime.

We live on a very narrow margin of functionality.  We can do very well one hour or day or week, and very badly just as easily.  Right now we are on a side of that margin that has been very enjoyable.  Here is hoping for more time on this side!

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.

 

September 27, 2009

Two Nights in a Row!

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , |
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Last night was pretty tough — up and down all night long, then up this morning at 6:45am.  The same is happening as I write this and has been going on for two or three hours.  There is no point in my trying to head in to bed yet since the activity is constant at the moment.  She has been climbing in and out of bed for no apparent reason with only minutes in between. 

While, again, it is a function of the disease, it is no less frustrating.  The time that I have generally claimed as my own in these late hours after Mary Ann goes to bed is coming to no longer be my time.  Tonight I set upon having some spiritual renewal time.  There is a podcast of  the Saturday worship service at the Taize Community in France.  The music is the sort that draws the participant in with a beautiful simplicity.  The readings are done in at least three, often more, languages.   There is a calm and peace that seems to include in community people like me, listening from thousands of miles away. 

I had first read a weekly poetic devotion by Fr. Ed Hayes, whose writings have had much impact on my personal Spiritual journey.  The reading suggested lighting a candle.  I haven’t done it in a very long time, but I pulled out a votive candle, placed in on the worship center, a cabinet built precisely for that purpose, with stained glass inserts in the doors.  I lighted another candle in a tall walnut candle stand made by my Dad, many decades ago.  Next to that candle stands the Shepherd’s Staff made by a parishioner and given to me at my retirement, a symbol of my forty years of ministry. 

A small iron Celtic Cross stands on the cabinet next to the votive candle.  Joining the Cross and candle on the worship center is a large ceramic bowl with lettering and symbols painted on by the other Staff members and again, given at my retirement.  The words are the summary of the congregation’s sense of purpose, “Grow in Faith.  Share Christ’s Love.”  The bowl is a symbol of Baptism, in our tradition, understood to be that first encounter with the Grace of God, an act of unconditional love by God, initiating relationship. 

One other item on that worship center is a simple memento of a long-standing friendship with a small group of parishioners from the first parish  I served as pastor.  It is a small beveled glass case with found items, pine cones, dried weeds, parts of plants, stones picked up on a trip together to Alaska many years ago.

With the candles and the light from the computer screen only,  I began the Taize worship.  As I settled in enjoying the sensations that come with such an experience, the monitor screen that keeps me aware of what Mary Ann is doing as I sit here, revealed the activity.  Since she is at risk of falling when she gets up, needs help to use the commode, to manage the cup of ice water next to her bed, to turn over in bed, her activity demands my participation. 

I have stopped and started the worship a number of times, getting more frustrated each time, resenting the loss of the freedom to enjoy the experience.  There is a odd sort of irony, that the very thing that helps me maintain a healthy equilibrium in caring for Mary Ann, is doing the opposite tonight. 

As the Neurologist allowed, I have just this evening increased the dosage of Seroquel, which is the medicine that both reduces the hallucinations and helps with sleep.  The last increase was not enough.  It is too soon to assess the effectiveness of this increase.  Certainly, the hallucinations have not decreased yet, they continue to be on the increase.  Just moments ago she told me to be careful of the little girl when I was adjusting her sheet.  This morning when she first got to the table for pills and breakfast, as soon as I turned on the light, she tried to show me the blood on her hands.  I think she believed it to be from the raccoons or whatever biting her.  There was, of course, no blood. 

Last night’s post mentioned my need for better choices in the area of diet and exercise for the sake of this Caregiver staying healthy.  Last night, today and tonight have revealed again the difficulty of following through with such plans.  When there are nights like these that string together, it is just survival mode.   A steady pattern of changed behavior seems completely out of reach.   I am still reading the book offering helps for improving the diet part of the problem.  Maybe some changes can be folded into our days. 

As Scarlett would say, “I’ll think about that tomorrow.”

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.

 

September 23, 2009

Carotid Artery/Heart tests — No results yet.

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Warm gel is a good thing when having an echo-cardiogram and a carotid sonogram.  Yesterday was Mary Ann’s every six month check of the lesion in one of her carotid arteries (the ones in the neck that supply the brain with blood), and her every six month check of her heart, the valves and general condition.

The tests happen so regularly since at some time, should the lesion in her carotid artery grow past a certain point, the question of surgery will come up.  She has already had one stroke, probably caused by bits of plaque sloughed off from that lesion.  The most we can hope for is very little change in how much of that artery is blocked.  I will admit that neither Mary Ann nor I am much interested in a major surgery.  We would certainly discuss the option.  I would not presume to know for sure what Mary Ann might want to do if surgery is suggested.  Her Mom had it when she was in her 80’s, and she did very well.

What the echocardiogram shows could have some impact on medications.  It was interesting to watch the med tech do the test.  She had a student with her.  She described what she was looking at to the student as she pulled up each view of Mary Ann’s heart.  I had a great view of the screen during the entire test.  It was helpful to me to hear her point out and name the parts of the heart on the screen.  Having watched the screen for the last few echo-cardiograms, I am getting fairly familiar with the images on the screen.  It helped this time to have a running commentary on what I was seeing.

What was especially interesting was a little mini-drama, as the med tech was describing what she was seeing to the student.  At one point there is color added to the screen.  The red indicates blood coming toward the probe, the blue indicates blood moving away from the probe.  When the med tech was checking the valves using the color mode, her voice lowered as she spoke to the student.  I inferred that the movement of the colors was indicating leaking valves and she did not want to break protocol by revealing that within Mary Ann’s and my hearing.  I had been quiet (unusual for me) until then.  I decided to relieve her distress by mentioning Mary Ann’s problem with leaking heart valves. The med tech’s response indicated my assessment of her reaction had been correct.  Up to this point, the leaking is not severe enough to warrant raising the surgery option.

Both Mary Ann and I had blood tests a week ago.  Her orders came from our GP (thyroid and cholesterol check), mine came from our Cardiologist (cholesterol).  Mary Ann is the one with problems, right?  Her numbers were great!  Mine produced a message from the Cardiologist to double the dosage on my cholesterol lowering med.  Mary Ann’s annoying ability to stop eating when she is full, as well as her distaste for leftovers and much of what I cook, seems to be serving her well in the blood chemistry department.  My inability to stop eating until everything is gone on my plate and all the containers on the table, does not serve me so well in the blood chemistry department.  I suspect a program of improved diet, exercise and weight reduction is in my future — perhaps I should have a snack and lie down until that thought passes.

We got a copy of the written results of our blood work yesterday after the tests were done.  Mary Ann’s results revealed the continuing reduction in her kidney function.  The surface of her kidneys has hardened due to decades of high blood pressure.  If you have read earlier posts about her struggle with Orthostatic Hypotension (low blood pressure when standing, producing fainting spells) you will catch the irony.  She is now taking medicine to raise her base blood pressure to reduce the problem of her BP lowering too much when she is standing and walking.  If I am reading the lab report correctly, she has just moved into stage three of five in her Chronic Kidney Disease. The good news is that we all have so much kidney capacity that it could lower to 30% of full functioning without becoming dangerous. When I include that sort of information, remember that I am not a doctor.  Don’t take my word for it. A few years ago a very candid Nephrologist told us that Mary Ann would likely die with Chronic Kidney Disease, not of it.  At that time we all agreed not to treat the kidney disease since the treatment would make the fainting worse by lowering her blood pressure.

As the tests were going on, I thought about how scary all the test results can be.  When we first were told about each of the problems, there was that feeling in the pit of the stomach that the end might be nearing.  After years of monitoring the results of the tests, it is just more information confirming what we already know.  Even if there is something new, Mary Ann has faced down so many medical problems for so many years, we just take it in stride.  Mary Ann could die in ten minutes, ten months, ten years, or more.  So could I.  Death lives just on the other side of life.  Coming to terms with that provides a sense of peace, and affirms the sweetness of the life we have at any given moment.  Our spiritual foundation steals from death its ultimate power to destroy.  Neither of us longs for it.  We both recognize the pain that is left to those we leave behind.  At the same time, we recognize our mortality and have learned to live with it.

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.

 

September 20, 2009

Caregiver’s Life Preserver, Vol. 4 – Followup

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Remind me how much I loved weeds and bugs as a child.  I seem to remember writing something about that in an earlier post.  I just about had my fill of weeds and bugs on this trip to St. Francis of the Woods.

I have always loved the outdoors, but I have also always loved being comfortable.  Trudging through waste high, sometimes head high, weeds for a couple of hours, bugs surrounding me, checking me out at close range, stretched my idyllic view of the outdoors to the limit.

I remember walking the woods at my parents’ place in Northern Illinois, loving everything but the deer flies.  They kept me from idealizing the outdoors beyond reality.  Then there was the Poison Ivy.  The world of nature can be a hostile place.

This trip to St. Francis of the Woods was different from the last few times I have gone.  When possible, I usually go after the first frost and before the bugs have come out in the spring.  Cool and crisp air, dried weeds and clear skies have welcomed me the last few years.  This time it was warm, muggy and cloudy.

With that introduction, you might suspect that this trip was not a good experience.  It was.  First of all, while I am concerned for the environment and the well-being of all creatures, insects included, it seems to me that the person who invented the insect repellent Deet should be awarded the Medal of Honor.  I was not bitten by one mosquito, nor did I find one tick on my body, and while the bugs were everywhere, when they landed on me, they didn’t stay for long.

One benefit of coming at this time of the year was that there were flowers everywhere.  The sights were beautiful.  The flowers drew butterflies.  There were all sorts of butterflies of different sizes and colors.  Every once in a while one or two would land on me as I walked through the weeds.  There was one particular species that caught my eye.  It was probably a Fritillary, but I am way outside of my comfort zone in naming a butterfly other than a very few.  It was fairly large, and the brightest, almost, iridescent orange.  There might be as many as three flying around one another in a cluster.

There are now a couple of bee hives at the corner of one of the fields that I walk through.  I gave them a fairly wide berth.  Through the binoculars, I could see hundreds of bees flying in and out and all around the hives.  I am not particularly fearful of bees, but I didn’t want to have any unnecessary encounters by moving into their home territory.  I noticed as I walked through a nearby field, that the flowers were covered with bees.  St. Francis should have a great harvest of honey when the time comes.

The first evening’s trip through the woods provided no bird sightings at all.  The next day, there was more activity.  I was snorted at by some deer hiding in the woods as I walked by.  At one point a couple of does ran through the weeds in front of me from the woods on one side to the woods on the other.  There were a couple of groups of White Pelicans flying overhead, appearing to be headed the wrong direction for a fall migration.

It was hard to find a spot to put my three legged stool so that I could read a bit.  I didn’t want to be completely buried among the weeds.  I managed to find a spot with short enough weeds that I could sit, eat an apple and then read a very few pages.  The muggy, warm air and flying bugs around my sweaty brow made it uncomfortable enough to discourage me from staying long. I did catch sight of a flock of Common Nighthawks going by.  They are not often seen in the daytime except when passing through in the spring and fall.  Nighthawks are in a family of birds called Goatsuckers.  I just get a kick out of knowing that and saying the word “Goatsuckers.”  I need to check online some time to find out how that name was chosen for them.  I wonder if it had anything at all to do with goats?

I walked down to a newly discovered pond very close to the cottage I was staying in.  The pond was sort of ugly and messy looking, very small.  I saw a large turtle sunning itself when I came closer to the pond.  It slid into the water since I was too close for comfort.  I looked at the water through the binoculars to see if I could locate more turtles under the water.  Then I saw him.  I can’ t really know for sure how big he was, since he was just under the water at the edge of the pond nearest me.  The light refracting through the water can make something look bigger than it is.  It was a Snapping Turtle that appeared to be close to two feet long and a foot and a half wide.  He looked far too big to be living in such a small pond.  I watched him for a long time, and when he moved, I was glad he turned away and moved down farther into the pond.  I would not have been interested in him coming my way.

The most meaningful and valuable time on this retreat was the four and a half hours of catching up with a friend from the Oklahoma City area that I hadn’t seen in over thirteen years.  I have to say that John is as close a friend as I have ever had in my six and a half decades.  During the nine years in Oklahoma City, John and I spent many hours early in the morning at Ingrid’s German Deli talking about our faith and journey we were on living it out, John caring for Sherrie, dying of Cancer, and me dealing with the impact of Mary Ann’s Parkinson’s on our household.

When I went on ahead of the family to start serving the congregation in Bethany, Oklahoma, I lived for five months with John and Sherrie, and their children, Hope and Joel.  I cannot imagine more gracious hosts.  Their spirituality was a marvel to behold.  I have been around lots of folks who are committed to their faith, and sharing it with others.  John and Sherrie did it with such genuineness and humility that those around them never were made to feel inferior.

I had the privilege of ministering to and being ministered to by Sherrie as the Cancer entered her life and became the means through which she touched the lives of so many on her way to her death — and life with the Lord on the other side of death.  I had the additional privilege of conducting her funeral, attended by so many that the Sanctuary couldn’t hold them.

If that was not enough, I had the joy of performing the marriage of John and Peggy, as each was led to the other at precisely the right time to begin building a new life together.  It was refreshing to hear how their spirituality has grown and how their life together has unfolded in the years between then and now.

Not only did the retreat provide the refreshment that comes from engaging the natural world at close range, being fed by a meaningful friendship, but I probably accumulated almost twenty-four hours of uninterrupted sleep in those two nights.  This morning there was a gentle rain with soft rumbles of thunder on occasion in the background, providing the perfect setting for lying in bed, sort of semi-conscious, just savoring the moment.

All went well with Mary Ann while I was gone.  Daughter Lisa had some good quality time with her Mom, and Son Micah, Becky and Chloe were able to come over so that we could eat Pizza together tonight.

The time away provided the opportunity to think through how things are going for Mary Ann and me.  As always, there has come a renewed resolve to be more effective as a Caregiver.  Whether that resolve will result in any changes in what I do and how I do it remains to be seen.

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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