The Caregiver Calling

This one is a veritable Life Boat, not just a Life Preserver.  Thursday morning (day after tomorrow) I will get in the car and drive a little over five hours on the Interstate through the Flint Hills and on into Oklahoma to St. Francis of the Woods Spiritual Renewal Center.  I will stay over two nights and return Saturday afternoon.

What about Mary Ann???  Mary Ann will have a great time while I am gone.  She will have our Daughter, Lisa, all to herself for that entire time.  Hopefully. our Son, Micah, and family will be able to join the party at some point.  Lisa is flying in from Kentucky as a gift to both Mary Ann and me, so that we can have a break from one another.  Admittedly, 24/7 does wear on both of us. Our Son-in-Law, Denis, will be serving as both Dad and Mom to the girls for the time Lisa is gone.

I have described St. Francis of the Woods in earlier posts.  Lisa provided the opportunity to go some months ago.  While I am at St. Francis, I will walk for hours, read, meditate, all among beautiful wooded paths and open fields.  The Renewal Center includes a 500 acre working farm.  There are only three cottages in the part of the property on which I will be staying.  The cottages are not in sight of one another, so it is not unusual to see no one for hours.

Maybe my love of solitude is the result of being the youngest of five children by so many years that I was raised almost as an only child.  I spent much of my childhood outdoors by myself.  I loved it.  I don’t really remember ever feeling lonely when I was outdoors in a natural setting.

I will take with me a very small three-legged stool strapped to my backpack so that I can stop to sit and read.  I will read some Scripture, a book on Spiritual Formation, and a book titled Quantum Physics and Theology, written by a Theoretical Physicist who later in life became an Anglican Priest.  I will carry my binoculars and look for birds and other wildlife.  I will watch the sunset from a wonderful spot on a hill that provides a panorama to the west stretching for miles.

I will probably sleep for many hours.  At this point, it is quite an unusual experience to have uninterrupted sleep.  I have checked the weather forecast for Coyle, Oklahoma (the nearest town — very small).  The weather is predicted to be partly cloudy, in the low to mid 70’s during the day and the upper 50’s at night.  That would be hard to beat.

One treat that may or may not materialize is a visit with a very good friend who was a member of the congregation I served in the Oklahama City area.  As a physician attached to a University Hospital, his schedule might not allow us time to talk.  I ministered to him and his family as his wife battled terminal Cancer.  Actually, we ministered to one another as we dealt with the Parkinson’s at the same time.  We spent hours at Ingrid’s Deli early in the morning a couple of times a week processing our experiences.  We haven’t seen each other in over thirteen years.

Since there will be no computer access at St. Francis, there will be a few days break in the postings here.  The only electronics at the cottage will be the portable CD player I am taking along.  By the way, there is a fully equipped kitchen including a microwave and, gratefully, a coffee pot.  I will bring some of those frozen leftovers from the freezer.  Cereal, fruit and granola bars will fill out the meals.

As I have continued this series on a Caregiver’s Life Preservers, I am wondering what Mary Ann would consider to be her Life Preservers.  I am not sure our current capacity for communication will provide the answer to that wondering, but I may just ask anyway.

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.

When Mary Ann got up from her chair once this afternoon, as usual, I got up from my chair to ask where she was going so that I could help her if needed.  She came the few steps toward me, placed her hands appropriately and began to dance.  This will be no surprise to those who know me well, but even after 22 years of Parkinson’s Disease, several heart attacks and blocked arteries, a stroke, a life-threatening bout with pneumonia, and now a couple of years into Parkinson’s Disease Dementia, she can still dance better than I can.  I stood and swayed a little, while she actually danced.  This is certainly a confusing little world in which the two of us are living.

The last couple of days have been better than the one I recounted in my last post.  Yesterday, Volunteer Edie came in the morning while I headed up to the lake to read, listen to music and watch the wildlife.  As always, Edie made a full and tasty meal for us, so Mary Ann actually ate well.

The meal I had prepared the night before did not thrill Mary Ann (pork chops, stir fried fresh veggies from parishioners’ gardens, and Uncle Ben’s butter and herb rice cooked in chicken broth).  That Saturday was pretty much a bust from beginning to end.

Sunday not only included the good meal that Edie had prepared, but there were football games.  Mary Ann is the more enthusiastic football fan in the house.  Both the Chiefs and the Bears lost, so she was not as pleased as she would have been had either or both won.

Today was a pretty normal day.  Zandra came to give her a shower.  That happens Mondays and Wednesdays.  We got out to the library, which she loves.  The library happens to be near G’s frozen yogurt, so there was the obligatory stop there.

A Volunteer, Jolene, came to spend time with Mary Ann after supper while I headed up to the spot with the view about ten minutes from our house.  I took with me a number of CD’s that I had picked up at the library.   After listening to one of the Celtic CD’s, I put in a CD of Taizé music.  Taizé is a community in France to which young people in particular come to be spiritually renewed.  I haven’t been there, so I can’t really describe what it is like other than what I have heard and read.  The Taizé community is known worldwide for their worship life and liturgical music.  The music is simple, with refrains that are repeated many times, often sung in harmony by whoever has gathered for worship.  Taizé music is in many languages.  It seems to be a place at which national boundaries cease to divide.

The music felt like a life preserver to me this evening.  It is my hope that I will find accessible Taizé resources to add some more disciplined regular times of spiritual refreshment in my days.  I suspect it might help raise the quality of care for Mary Ann and the quality of life for both of us.

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

I am not sure I should be writing a post at the moment.  Maybe later in the day will be better.  At the moment she is napping, and I am able to be at the computer to write.  Last night’s post was almost euphoric after the great trip in the country.  I mentioned before closing that Mary Ann was restless.  She was up every few minutes until about 4am.  Then she insisted on getting up at 8:30am after three or four times up to use the commode between the 4am and 8:30am.

The needs began immediately.  As always, after a sleepless night the hallucinations have been almost constant, resulting it lots of time spent trying to pick up and throw away threads.  At one point as she was sitting at the table preparing to take meds and eat, she asked what the pink mesh was about.  She was convinced that she had it in her hands.

When she has had such a night and gets up early and stays up, there is oddly a great deal of lucidity intertwined with the hallucinations.  She is sometimes almost adversarial.  The restlessness has continued throughout the day up to the nap.  She has been popping up without warning almost constantly.  If I am out of sight for a moment, it is almost a certainty that she will get up.  That means even walking out of the room to get something for her won’t work.

I have asked in every way I know that she let me carry cups and glasses of liquid, since balance and fainting are issues.  Gratefully, it was water and not Pepsi in the cup when she went down, and, gratefully, she was not hurt.  Then there is the button by the toilet stool.  As always I asked that she push it before getting up to avoid falling in the bathroom.  I asked very slowly and carefully waiting to hear her agree to do so, out loud — which she did.  By the time I came back to check, she was half way across the bathroom with her slacks gathered around her ankles.

Last night and today provided a picture of how our lives are now being lived.  Mary Ann’s wants and needs at any given moment in the twenty-four hours of each day determine what I do and when I do it, no matter what my needs are or how I feel.  I have chosen this role, so whining about it is pretty futile.

What increases the level of frustration on a day like today is that there is no one with whom to be angry, no one to blame.  While I am not always shy about letting my feelings be clear, most of the time I do what needs to be done without complaint, and even try to be nurturing when I do it.  It is not Mary Ann’s fault that we are in this situation.  I am not a saint, but it is not my fault either.  Problems like this are not God’s idea of a good time.  God gets blamed for all sorts of things that were not part of the original plan, while often getting no credit for the wonder of life.  God doesn’t play games with folks.  Circumstances like ours happen to good people and bad people and people like us who have both good stuff and bad stuff in us.

I am grateful for yesterday, for a good day, some pleasure for both of us.  I am frustrated today, and struggling to keep it all in perspective.  Writing this post helps give some definition to the day that allows it to begin simply to be a challenging day, not a symbol of our entire life.  There is always 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.

How could it be anything but great when the destination was Braum’s Ice Cream and Dairy Store, and the reward was one Hot Fudge Sundae with pecans for me and one Pecan Caramel Fudge Sundae for Mary Ann?

We spent three or four hours mostly on the road, country roads, traveling nearly 150 miles by the time we returned home.  Madness, you say?  Not really.  While the destination was great, the trip was at least as great.

I am not much of a reader and, as a result, not a writer.  I envy those who have the vocabulary to write descriptively in a way that gives the reader the feeling of being there, experiencing the sights and smells, the layered depths of panoramas that could never be captured in a two dimensional medium.

I am at a loss to describe just how beautiful the day was, the fields and flowers and farms, the colors and textures of this Eastern Kansas landscape.  Between our fifteen years in Kansas City and the almost fourteen years here, this is just about the strangest summer we have ever experienced.  Throughout the summer there have been only a half dozen or so days that were the usual impossibly hot days.  Other than those few days, there have been comfortably warm days and cool nights punctuated every few days with a rain and thunder showers.

The plant life now looks a little like what we saw on our trip to Alaska a number of years ago.  Things are giant.  The Kansas Sunflowers tower over the fields.  The Soybeans look like a different crop entirely they are so tall and deep green.  The corn is tall and only now transitioning into its dry phase, readying for harvest.  Some of the corn fields are still green.

There are huge round bales of hay everywhere.  The fields that have been cut and the bales removed are now that bright green again as in Ireland.  It is as if time has just folded over and spring has become intertwined with fall.  The Sumac is beginning to change color.  The Milo is that rich dark copper color, while that bright fresh green of spring is everywhere in between.

Then there are the flowers — fields of them.  Everywhere that isn’t tilled ground, cut pasture, someone’s lawn, buildings or roads there are masses of Kansas Sunflowers, yellow blossoms of all shapes and sizes and kinds, blue wildflowers, purple thistles in blossom, white Snow on the Mountain and other white flowers, all mixed together with the dark tones of mature weeds and grasses fully in seed.  It has always intrigued me that in nature, colors that would never be put together by anyone aware of what colors should go together, look just right when mixed together in the patches between the road and the fence or stretching out in an uncut field of weeds.

The Flint Hills can take a person’s breath away.  They extend as far as the eye can see.  Today there was enough moisture in the air that the mist differentiated clearly layer after layer after layer of hills as they rolled off into the horizon.  The closer hills on the fringe of the Flint Hills were separated from one another by ribbons of trees, wherever water settled after rains or there was a creek flowing (maybe trickling — this is Kansas) between and around them.

The moisture in the air at the moment also provided wonderful cloud formations to see.  Our trip began in mid-afternoon and extended into the very early evening.  The sun began to provide shadows that had an interesting effect on the Sunflowers.  Not only do the sunflowers tend to face the sun and follow it during the day, when they were out of the direct sunlight, the color seemed to change from the bright yellow to a deep rich golden buttery color.

There were few birds to be seen, a hawk lifting up and passing just in front of the car, a few Scissortail Flycatchers, the ubiquitous doves and starlings, and a cluster of Turkey Vultures circling in one area.  By the way, I discovered that a group of Turkey Vultures when perched together is called a “wake” of Vultures. That may come from their sadly hanging heads when they perch.  Then there is a Parliament of Owls — but I digress. I saw no owls.

While Mary Ann doesn’t enjoy the rides in the country as much as I do, she did read some in a book she has on the trip to Braum’s.  She seems to be able to read with the outside light in the car far better than she can with the lights in the house.  She put the book away for the trip back and seemed to enjoy the sights.  All in all, it was a good day.

Just an update on the smoke alarm excitement last Sunday morning:  The security system Tech came today.  He concluded that at some point one of the techs had entered a code incorrectly, resulting in no signal from the smoke alarm reaching the dispatcher’s console.  He also suspected that dust in the sensor had made it hypersensitive, resulting it going off with less smoke than should have activated it.  By the way, he was interested in seeing the manual that came with our system around twenty years ago.  He had never actually seen that original book.  He assured me that the book was still accurate and that our system was fully functional even though old.  He did not have with him or try to sell me an extended contract — for which I was grateful. There was no charge for his services.  Now there is a reversal of the good news/bad news of Sunday morning.  The good news Sunday was that there were no fire trucks roaring into the neighborhood as the horn went off.  The bad news was that no fire trucks came when the sensor went off — what if it had actually been a fire?  Now comes the reversal.  The new good news, the fire trucks will come if there is a fire, the bac new, they will come if there is no fire and I don’t get the alarm turned off soon enough.

Well, unfortunately, the evidence on the monitor seems to be pointing to another restless night.  We will see. I keep forgetting to tell the bath aid, who comes twice a week and changes the bedding on Wednesdays, to use only the white or checked sheets and not the print with the flowers.  Mary Ann always has problems seeing the images on the print sheets as something moving or spots or threads needing to be removed.

For any who are concerned that the time stamp on these posts seems to indicate that they are written in the wee hours of the morning, the time stamp is Greenwich Mean Time, five hours ahead of Central Daylight Time.  It is now a little after Midnight, not 5am.

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.

Sleep that knits up the ravelled sleave of care
The death of each day’s life, sore labour’s bath
Balm of hurt minds, great nature’s second course,
Chief nourisher in life’s feast.
~William Shakespeare, Macbeth

No, I did not retrieve that quotation from those English classes in which we had to memorize passages from Shakespeare.  I did remember enough to look it up online.  The only literary passage I actually remember is a sentence or two of the Prologue to the Canterbury Tales, which we were required to memorize in Middle English.  It was Senior English at West Aurora High School taught by Mrs. Winteringham.  When asked why we should memorize the Prologue to the Canterbury Tales in Middle English, she told us that some day we would be riding a bus and sit next to someone of the opposite sex whom we would impress by reciting it and in doing so begin a wonderful relationship.  At least that is how I remember her answer.

Sleep!  What a wonderful and delightful gift we have been given.  Between 7pm last evening and 11:30am this morning, Mary Ann and I accumulated a total of 28 hours of sleep.  I slept from shortly after 11pm (early to bed for me) to 10:30am this morning (could have slept longer), and Mary Ann went to bed and to sleep at 7pm last evening and woke up just before 11:30am.

Why so long?  Who knows?  We have had a number of restless nights.  I claim the first few hours after Mary Ann goes to bed as my own personal time, listening to music, writing a post on this blog, doing household tasks, occasionally getting caught up in a movie on television.  I pulled out the video of Riverdance and watched it again the night before last.  I can only guess that the restless nights, staying up too late and the hint of some virus or other trying to get a foothold drove my need for sleep.

Mary Ann, of course, has also had restless nights, sometimes for a good portion of the night.  One of the symptoms of the Parkinson’s Disease Dementia (a Dementia with Lewy Bodies) as it progresses is excessive sleeping, long nights and/or naps during the day.

Whatever the reasons for the long night, we both felt better today.  Mary Ann was sharp and funny and pretty much her old self for a good portion of the day.  There is continuing research on the function of sleep in humans. Some need more, some need less.  Some who study sleep seem to question the need for it.  I think Shakespeare nailed it.  Sleep provides a way not only for our bodies to rest but for our minds to file and sort and build links in the database, process events, and just generally unfrazzle.  That is a technical term used in the neurosciences — or not.

Speaking of which — I think it is time for some unfrazzling.

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.

We splurged and ate at Texas Roadhouse.  It is not exactly a gourmet restaurant, but the beef is tasty and prepared well.  Most of all, those sweet potatoes are spectacular.  They have managed to make a veritable health food into a diabetic’s nightmare.  Gratefully, neither Mary Ann nor I have added diabetes to our collection of ailments.  Frankly, given the amount and regularity of our ice cream consumption, I  have no idea why we haven’t both joined the ranks of those with type II Diabetes.

Mary Ann chose the Texas style beans as her second side.  She had white slacks and a turquoise and white top. The combination of twenty-two years of Parkinson’s Disease, a light stroke that effected her right side, and the Parkinson’s Disease Dementia, a Lewy Body Dementia, has made negotiating eating utensils very difficult.  Both the stroke and this particular version of dementia affect the portion of the brain that organizes things in relationship to one another, spatially.  As a result, getting those beans out of that little bowl and into her mouth was no small challenge.

The rule when we go out is that Mary Ann does everything herself, unless it is absolutely impossible for her.  That is her rule.  She will often allow me to cut something into small pieces if it doesn’t come apart easily using only a fork.  She did allow me to cut the meat for her.  I could do that discreetly by reaching across the table.  Feeding her the beans would have been out of the question.

It is interesting to me that she seems not to be at all self-conscious about the food moving out of the dish or plate on to the table, where she chases it to try to get it on to the fork or spoon.  The problem with dexterity and the spatial issues along with her penchant for shifting to the left, with the food then traveling over her lap to get to her mouth, resulted in lots of deposits on her clothes the color of the sauce on the beans.

As soon as we got home, the spray and wash came out and a load of clothes went in.  (I just had to take a dryer break — it is all folded now.) There is seldom a load of wash that doesn’t include a few items sprayed with Spray and Wash.  The Plavix and aspirin combination that Mary Ann takes to help prevent another stroke thins her blood enough that there is often some oral and nasal bleeding at night.  Sheets are almost always sprayed before going in the washer.

I haven’t asked the online group of Caregiver Spouses how many others go through large quantities of Spray and Wash, or something like it.  I suspect that the few hundred in that group contribute a great deal toward the job security of those who manufacture it.

Just as a follow-up to the smoke alarm fiasco on Sunday morning, the security company phoned to say that there will be no charge for the service call coming this Friday.  They determined that our system is so old (almost twenty years), and we have paid for it for so long, that they will upgrade the system at no charge.  That is good news.  I am suspecting that the reason the signal was not received by the dispatcher when the smoke alarm went off was that the system is obsolete.  I am not so naive that I did not check and determine that there will be a contract available that day for me to sign, raising the monthly fee to provide ongoing maintenance.  I should still have the choice that day to decline the offer.  My expectation is that we will still receive the free upgrade.  We will see.

Last night was another restless night.  Here is hoping for a good night’s 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.

There was a very tasty ice cream treat to be relished.  That always sets the tone for a good time.  The conversation was lively, interesting, silly, serious, and, in general, entertaining.  Eddie and Carol are neighbors and members of the church from which I retired a year ago.  We headed down the block some time before 7pm and returned home some time after 9pm.  Shortly after we got in the door, Mary Ann said, “That was fun!”

If you asked me when last I heard her say spontaneously that she had fun, I would have difficulty coming up with an answer.  I have to admit that I have been struggllng with the caregiving role lately.  I am sure Mary Ann has been struggling with the quality of my caregiving and my impatience with her.  Before we left the house this evening we were not in the best frame of mind.  This evening was a much needed tonic for both of us.

Most of the time it is pretty hard to tell whether Mary Ann has enjoyed an activity.  Words do not come easily to her.  Even before the Parkinson’s Disease diminished her capacity for both verbal and non-verbal expressions of feelings, she was not very demonstrative.  It often took some cajoling to coax out an assessment of whatever we had done for entertainment.

Her response this evening sparked my trying to think of things that she enjoys.  Having been married for nearing 44 years, I can usually determine whether or not she has enjoyed an activity.  I am not always sure my conclusion is correct, but I suspect that most of the time I can tell.

We visited our Son, Daughter-in-Law and Granddaughter yesterday afternoon and evening.  She enjoys visiting our children, their Spouses and the Grandchildren.  That is always a sure bet for a good time for Mary Ann.  By the way, that visit included both pizza and ice cream — can’t beat that!

This morning Mary Ann went to her Tuesday Morning Bible Study.  While because of the confidentiality agreement, she can’t report on the content of their time together, I can tell she enjoys it.  When we are scheduling a doctor’s appointment or whatever it is, she always makes sure that we keep Tuesday mornings clear.  She gets up, even if she is tired and longing to sleep in, so that we can get her ready in time to make it to the class.

Mary Ann enjoys the Volunteers’ time at our home with her.  Yes, part of that is because when they are at the house, I head out and am not hovering over her.  She also has developed wonderful friendships with those who have come to stay with her over the years.  The Volunteers don’t come so much to give me time away, but to spend time with Mary Ann.

I know Mary Ann enjoys time at the library.  She would have loved to run a little book store or work in a library.

She has wanted to get to a movie at various times.  Depending on the movie, of course, she likes to get to the movie theater.  Admittedly, it is seldom that we find something we really want to see.

Mary Ann, of course, likes going out for ice cream or going to a restaurant for a meal.  There are a few televission shows that are must see’s for her.  At the moment The Closer and NCIS are pretty much at the top of her list.

I will keep looking and listening for signs that indicate whether or not Mary Ann has enjoyed an activity.  Her circumstances make it pretty tough to enjoy life.  At least I can try to make sure that we keep in her days plenty of things she enjoys.

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.

At least I can cook in the crock pot! Oh yeah???  I have done it many times before — just brown some meat, put some of that chicken broth in a box in the browning pan, scrape off the good stuff on the bottom of the pan, put it in the crock pot, add whatever else goes with the planned result, and let it all cook a few hours.

Tonight was a neighborhood potluck.  I decided to make the old standby, pork, KC Masterpiece BBQ sauce, and canned beans added a couple of hours before serving.  It tastes great.  Actually, it turned out fine and was eaten by many at the potluck.

However!!!  I sliced a large piece of boneless pork loin inte seven thick slices.  As usual, I heated some olive oil in the pan to brown the meat.  As the meat was browning, there was a little more smoke than usual — not sure why.  You can guess what happened.  The smoke detector that has been a part of our security system that was in the house when we moved in thirteen years ago, the one that is monitored for a monthly charge — the smoke detector activated the horn that is loud enough to wake the dead.  By the way, Mary Ann was still sleeping when this happened.

Unwisely, we never use the system.  I thought the smoke detector didn’t work.  It does!!  In fact, it would not shut up!!  I punched the keypad.  It stopped — for a very few minutes — then started again.  I punched numbers, every set I could remember ever using, but it always came back on after a few minutes.  I opened every door and window I could, started a fan, it still wouldn’t stop.  There was no longer any visible smoke, and it still wouldn’t stop.

I frantically searched through a drawer (about eight inches deep) filled to the top with various instruction and warranty booklets that came with with all sorts of purchases, some we no longer own.  Finally, I came upon something from the security company, something with a phone number.  I called.

The person on the other end was sympathetic.   Together we discovered some good news and some bad news.  It was the same news that was both good and bad.  They had no signal and there were no fire engines that had been dispatched.  I was grateful that there were no fire engines about to come roaring into our quiet subdivision.  I was also distressed to think that were this a real fire, there would be no fire engines coming to put it out.

The dispatcher did not manage to provide what I needed to stop the horn from sounding.  She did transfer me to customer service to talk about getting someone out to determine why they received no signal.  All this while the horn was coming back on, I would run and punch in what I determined was our code, which would stop it for a few minutes.  In the course of the the conversation with the Customer Service tech, she told me how to reset the system after there was no more smoke.  There had been no smoke for about fifteen minutes — just the horn blasting.

At $95 for the first 30 minutes and $25 for each 15 minutes after that, a tech is coming to the house this Friday to determine why there was no signal to the monitoring folks that the smoke detector was going off.

By the way, there were, of course, some needs to be met in my Caregiving role while this was happening.  Mary Ann did as much as she could to allow me to deal with the madness.

When finally it was all over, the food was in the crock pot and we were rushing to get out the door so that we could make it to church (just in the nick of time for the 11:15am service — by the way, there is no 11:15am service — it is at 11am) — I announced to Mary Ann in no uncertain terms that that would be the last time I cook!!!!!!  It will be sandwiches and TV dinners and fast food from now on and that is that!

So that those who read this blog will not now call the authorities to rescue this poor woman from a mad man who will no longer feed her anything but junk food, I will resume my feeble attempts at providing nourishing fare for Mary Ann.  I promise!

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

The power of music to calm, to stir, to break through defenses is a wonder to behold.  An hour each of the last two evenings sitting in front of the audio system listening to music after Mary Ann has gone to bed has been time very well spent. 

For me, almost immediately when the music begins, it is as if all the frustrations and harsh realities of the day no longer exist.  Mind you, it has to be what is in my estimation, good music.  If it is trite, or shallow, or poorly performed, I simply have to turn it off and put in another CD.  Of course music is a matter of taste.  What grabs one person might repel another. 

I generally cannot use music as a background to doing other things.  Maybe it is the structure of my brain in particular, but I pretty much need to do one thing at a time.  I either read or listen to music, very seldom do I try to do both at the same time.  When I used to walk neighborhood streets for exercise, I could listen to a CD as I walked.  If I am out in the woods walking, I listen to what is around me.  I am not interested in blocking that out with music. 

Since we are homebound so much of the time and the television is going almost constantly, having an hour just for music is a luxury.   While I usually become engaged in what is going on in the music and immerse myself in it, there is often a journey on which it takes me.  That journey takes me through my defenses, on past the frustrations of the day, into layers of being that are closer to the core of who I am.  Not always, but often, I begin reflecting on very basic issues. 

The place to which the music often takes me is a place where I can wander around in my mind and heart, looking pretty directly into my failures and weaknesses, feeling the pain.  It is not scary or depressing, just real.  There in that core of who I am lives the Grace of God.  It is surrounded in that Grace that I am able to peal away the layers behind which I hide, even from myself.  When finally the journey has taken me through the last layer, there I find a sense of security and safety. 

Don’t misunderstand.  This is not always pleasant.  The place to which I go is not always a happy place.   Often the worst of what lives in me is exposed.  I certainly don’t always like what I see.  It is just that whatever it is does not have the last word on who and what I am.  The spark of life given to me with every breath comes from a Someone who wants me to be — whoever or whatever I am.   I have to say that more often than not, no matter what I have seen on the journey, I find it exhilirating and refreshing.  Maybe in a sense it is a way to reboot my mind and heart. 

All of us are coded differently and find renewal in different ways.  Our life preservers vary.  What is common to all who are full time Caregivers is the need for life preservers to hang on to regularly so that we don’t drown in our challenges and frustrations. 

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I thawed the roast in the microwave and cut it into two pieces to be sure it thawed completely and would fit into the crockpot.  Then I heated the large pan to brown the meat in olive oil.  As usual, the stove and the floor in front of it glistened with the olive oil splatter before all sides of the the two pieces of beef were browned. 

I put the beef into the crock pot with some red wine and a packet of Onion soup mix and turned it on high.  Then I browned lots of onions and some garlic in the same pan and set it aside to put in the crock pot later. 

After a trip out to Bobo’s Drive-in and an enjoyable visit with the bearer of some chocolate (local source for chocolate is named Audrey), I got to the business of getting the veggies prepared and into the pot.  There were carrots, potatoes, some celery, the onions and garlic from earlier to be added.  After that had cooked a while, just for the heck of it, I tossed in a can of corn and a can of green beans.  I have trouble knowing when to stop when making these sorts of things.  I am of the school that says, whatever the ingredient, if some is good, more is better.  I have trouble with pots that seem consistently to be too small.  I did have enough sense to add a second packet of onion soup mix so that here would be enough seasoning to handle such a large quantity of food. 

The process began around noon.  The last of the veggies went in some time before 5pm.   It was about 7pm when we sat down to eat.   The potatoes still weren’t done.  Yes, I cut them into fairly small pieces so that they would cook more quickly. 

Needless to say, Mary Ann did not eat much of my culinary delight and needed a snack before bed (the usual little Snack Pack container of tapioca pudding).  The hallucinations are now interfering with her settling in and going to sleep.  It may be another long night.

By the way, I turned the crock pot on high after supper, and a couple of hours later it tasted great — to me.  I suspect Mary Ann will not be interested in trying it again.  That is our usual pattern. 

I guess it is a combination of laziness, lack of experience in cooking, and the disincentive of Mary Ann’s pretty narrow range of what is acceptable to her to eat that fuels my failure to launch in providing regular nourishing meals for Mary Ann.  Today is probably the first time in a week or so that I have attempted to do anything other than make sandwiches, take her out, give her what she brought back from the last time we went out, or eat the food that folks sometimes bring over or provide for us. 

I have to admit, that it continues to be a source of shame and embarrassment to me that I have not done better at fulfillling my Caregiving duties in the area of food preparation.  The food that I do prepare tastes good to me.  I love leftovers and eat as much as I can of what we have.  I  am over twenty pounds overweight — a lot for this five foot, six inch frame.  The freezer is full of food that I will eat and Mary Ann will not.  What I make is usually, as was so today, crammed full of veggies and all cooked together.  It is just not appetizing to her. 

Actually, I have no excuse for not doing a better job in this arena.  Our close friends in Kansas City include a husband caring for his wife with ALS.  Charlie does a great job of providing a variety of tasty and healthful meals.  I think Marlene would agree, other than that he doesn’t always listen to her instructions as he is cooking.  I am a reasonably intelligent person; I can read; I can (reluctantly) follow directions — as in recipes.  I have watched and enjoyed lots of cooking shows over the years.   There were Francois Pope (Chicago area), The Galloping Gourmet, The Frugal Gourmet, Justin Wilson — The Cajun Cook, Yan Can Cook, Lidia, plus all the recent and current Food Channel cooks.  You would think I might have absorbed something.  All I seem to have retained from all of it is a voracious appetite.  The cooking looks like fun, but the eating is funner!

Oh well, no one said it would be easy!  As long as there are Glory Day’s pizza by the slice, Long John Silver’s, Bobo’s, McFarland’s, The Classic Bean, Copper Oven, Perkin’s, Jersey Mike’s, New City Cafe, Panera’s, Steak and Shake, Subway (unless they keep showing that annoying commercial with the out of key singing), and a cluster of ice cream and frozen custard places, Mary Ann won’t starve (at least until we run out of money).   

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.