July 2, 2009

Ceramic Dishes for those with Limited Mobility

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , |
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We headed out for a ride in the lush green countryside, through bean fields, wheat stubble after harvest, freshly mown hay being rolled into large round bales, gently rolling hills as far as the eye could see.  The day was warm and sunny with comfortably low humidity.  We took our time as we traveled to Harveyville, Kansas, a thriving metropolis populated with 136 male and 114 female humans and at least a two cats.  One of the cats is huge, by far the largest cat I have ever seen — friendly, but as usual, in charge of the Jepson Pottery Studio.

The studio is filled with hundreds of finished pieces as well as many that are in various stages on their way to completion.  Owner Barry was busy at the wheel turning some unusual looking vases (I think), interacting with two of his four young adult children while he worked.

We had taken to him a dinner plate we purchased at a Medical Supply store. The plate is made of some sort of very sturdy plastic, functional, but hardly pleasing to look at.  It is obviously a plate for use by those with dexterity problems.  The center of the plate is about a half inch deep providing a wall against which the food can be pushed to get it on the fork or spoon.  Without that deep lip, the food often just slides off the edge of the plate on to the table or Mary Ann’s lap or the floor.  The plastic plate is very light, demanding a piece of Dycem (www.dycem.com/), given us by our Occupational Therapist, to keep the plate from slipping.

He made one plate for us to try.  It worked.  Today we picked up five more plates so that we will always have a couple clean for both of us to use. They look great.  Mary Ann had picked the colors, a deep red with an uneven thin blue area around the rim. The plates are heavy, so no Dycem is needed.

We had already gotten four of the chili bowls with handles made with the same colors.  Those bowls have sides high enough so that, as with the plates, the spoon can be pushed against the side to get the cereal on the spoon without sliding over the edge.  I had often needed to feed her the cereal especially when she got to the last one third of the contents of the bowl.  With the chili bowl, I seldom have to help. She can use the handle to tip the bowl, making it easier to get the last of the cereal on the spoon and into her mouth.

He also made us some deep salad bowls, that, along with the chili bowls, can be used for ice cream should that be necessary. By the way, after picking up the ceramics, we drove another half hour or so to stop at the Braum’s in Emporia for hot fudge Sundaes with pecans.

I recognize that it would have been cheaper to use the functional plastic plates.  It is also true that just because Mary Ann has Parkinson’s Disease does not mean the aesthetics of our environment are no longer relevant.  If anything, they are more relevant.  We have less opportunity to get out and see beauty since we are at home most of the time.  We choose to have a quality of life that is nurturing and stimulating.  Objects of beauty are not just unnecessary extravagances but are visual cues that our life together is not just a matter of getting by until we die.

For some reason, Mary Ann did not at all warm up to the idea of using one of the plates to hold birdseed and be placed on one of the flat rocks in the waterfall area in our back yard.  It would look so great!

Today I encouraged Barry Jepson to set up a small area in the shows he does all over the country, an area with items that are user friendly for those with physical limitations.  Since it is a very busy time for him, he is not yet ready to put these new plates on his web site, but hopefully it will happen soon.

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.

 

June 20, 2009

Caregivers Sometimes feel Trapped

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Relationship Issues | Tags: , , , , , , , , , , , , , , , , |
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I have been writing these posts with a certain bravado about our meeting the challenges and choosing to live with meaning, refusing to let the Parkinson’s rule.  As is often the case, saying it is far easier than doing it.

Every two or three months, I take up the shower mesh from the bathroom floor to scrub it with Lysol Cleaner.  We put the interlocking mesh squares on the bathroom floor to protect Mary Ann from experiencing serious damage from the ceramic tile floor if she falls.  An earlier post includes the gory details of the time she fell on that unprotected floor and ended up in the Emergency Room.

The mesh lets the water through so that what doesn’t run down to the drain dries fairly quickly.  The mesh is made of a pliable plastic material that is impregnated with some sort of mold resistance material.  It remains clean other than in some places having a thin layer of residual soap from multiple showers.  The scrubbing I do just makes me feel better about the cleanliness of that floor.

I was outside for a few minutes checking on the tiles drying in the sun on the driveway, talking with a neighbor.  When I went inside, Mary Ann was on the floor in the dining room. She was not hurt at all.  She could have been hurt, but was not.  In the process she had knocked over some coffee demanding some spot cleaning on the carpet.

With the addition of the video monitor, we have reduced the number of falls dramatically.  This relatively minor matter, the fall, reinforced that being out of sight of Mary Ann either by not being in the room with her or not having the monitor in sight is risky.

I struggle to write about being trapped by the Parkinson’s as a Caregiver when Mary Ann is trapped in her own body.  I have no right to feel sorry for myself when she has fought with her own body for over twenty-two years.  A number of years ago, I remember her saying through tears (she seldom cries) that she wished she could get a new body.

She is trapped in a more comprehensive way than I am.  She cannot get a Volunteer to come and give her a break from her own body.  She is trapped, and to a lesser extent, so am I.  The Parkinson’s has come to live with both of us and has become a constant presence in the lives of our Children and Grandchildren as well.

Speaking only from the vantage point of the Caregiver, at times I find it very frustrating that I cannot simply immerse myself in something that takes me out of visual contact with Mary Ann.

A few days ago, I needed to have a Volunteer with Mary Ann so that I could go out and clean the gutters.  The Volunteer had to leave before I finished.  There was at least one fall while I tried to complete the task.

The solution of having Mary Ann outside with me for anything I need to do is not as workable as it may sound.  Due to the Parkinson’s and medications, she does not handle heat well.  She does not enjoy just sitting outside.

Going outside to feed the birds has to be planned for when she is either early in a nap, when it is less likely she will need to get up, or in the first hour or so when she goes to bed.  After an hour or so there is more vulnerability to her needing to use the commode.  Watering the flowers is equally challenging.

Sometimes I just head out the door and walk up to the corner three houses away and look at the sky for a moment, check for nighthawks if it is dusk, or just enjoy the sunset for a few minutes.  There is sometimes a feeling of being tethered to Mary Ann and her needs.  On occasion as a full time Caregiver to someone who needs help to do most of the things she does, my movements are governed by her needs, almost like a marionette’s movements are controlled by the puppeteer.  She doesn’t want it any more than I do, but nonetheless, that is how it sometimes feels.

Gratefully, there are also lots of times when I feel good about being with Mary Ann, able to be close to her so much of the time after years of being away at work sixty to seventy hours a week.  I hope that Mary Ann feels good about my being here some of the time also.  She is not able to express such feelings, but hopefully, they are there.

With all of that said, Mary Ann and I are living lives of value and meaning with joyful times as well as frustrating times.  We are free to do what we are able to do when we are able to do it..  We are experiencing life fully, taking each day as it comes with the bad and the good — pretty much the same way any of us lives, no matter what our circumstances.

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.

 

June 13, 2009

Do Each Task as if it is Important

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength | Tags: , , , , , , , , , , , , , , , , , , |
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I cleaned the kitchen floor two days ago.  I got out the Swiffer WetJet with the little button on the handle that squirts some cleaning liquid on the floor to be wiped with the pad at the end of the mop handle.  It is not rocket science.  I didn’t break a sweat.  The floor looked nice afterward. 

I have an earned doctorate; at one time I could read with limited proficiency five languages (English, of course, plus Latin, Greek, Hebrew and German).  At this point I can barely handle English.  I will not bore you with the details of the work that I have done in my career.  Suffice it to say, I could complain that cleaning the kitchen floor with our Swiffer WetJet was hardly important enough to be very satisfying. 

There was something satisfying about sweeping the dirt off the floor (I tracked in some dirt earlier in the day), then squirting and rubbing until the spots were removed.  My days are mostly filled with pretty simple and mundane tasks.  I get Mary Ann to the bathroom, to the table, bring her pills and juice and yogurt and Cheerios or Special K or Cinnamon Toast or a banana or a granola bar for breakfast.  I clean out the commode from the night before, make the beds, get Mary Ann dressed, maybe wash her hair.  I put wash in the washer, switch it to the dryer, fold it and put it away.  I fill the dishwasher, run it and then empty it. 

There are very simple meals to be made for lunch and for supper.   We sometimes head out to get something to eat at one of our regular spots.  I feed the birds and read emails while Mary Ann watches television.  I suspect I will not be nominated for one of the Nobel prizes for notable accomplishments in household care.

The role of Caregiver does not bring with it great public recognition, although the article Linda wrote on our situation did give us a moment of notariety in our local paper.    Each of the things I do during the day seems to have little importance, little value in the grand scheme of things. 

Within the history of the spiritual journeys of leaders in many religious traditions, there is a certain approach to doing each task, important or not by external standards, in a way that recognizes its inherent value.  The Rule of St. Benedict provides great attention to detail. urging all to work at menial tasks no matter their status.  Celtic Spirituality emphasizes focusing full attention single-mindedly on the task at hand, no matter what it is. 

I was in a committee meeting one evening.  The group was a fairly congenial crew, at least most of the time.  We were gathered to evaluate candidates for an opening at the Elementary school sponsored by three congregations.  I am not sure what triggered the interaction, but somehow the matter of the need to multi-task came up.  One of the women in the group immediately said that recent studies of the brain had revealed that women’s brains were hardwired for multi-tasking, and men’s brains were not.  Now I have no idea of the validity of the information.  I did however have a wonderfully annoying reply.  I said that may be true, but men do one thing at a time and do it well.  After the laughter subsided we went on with the meeting.  I still don’t know what was so funny about that.  Actually, I couldn’t even complete the sentence about men doing one thing at a time and doing it well since I was laughing so hard myself. 

There is something to be said for doing one thing at a time and doing it well.  Another way to say it is that it is good to focus full attention on the task at hand, to immerse yourself in it, heart and soul, to avoid distractions as much as possible. 

It seems as if much of what we do is done as quickly as possible to get on to the next thing or the really important stuff.  There is a sense in which we simply miss a good portion of the life we are living day by day, in anticipation of what will come later in the day or tomorrow or later in the week. 

Rather than measuring the importance of each task by what importance it has to others, or how much value it has in the marketplace,  how about paying attention to the task itself.   A priest named Ed Hayes has written some great tools for learning to pay attention to every task, big or little.  A couple of his books are Pray All Ways and Secular Sanctity. 

Whether a person has a spiritual understanding of reality or not, being present with each task while doing it provides an opportunity to recognize the importance, value, meaning, purpose of even the simplest of activities.  It is calming and satisfying to do one thing at a time and do it well, or do it with intentionality. 

When I listen to music, I usually do not use it as accompaniment for something else.  I listen to it.  The music sometimes becomes very powerful in touching me deeply when it could not if I was doing something else at the same time.  When I wash Mary Ann’s hair, it gets my full attention.  When I make the beds, the doing of it creates a feeling of order to my day.  Feeding the birds provides a meaningful intersection with a world outstide the walls of our house. 

Being present with whatever we are doing does not demand searching for some sort of deep meaning.  I suspect in the world of sports it is sort of like being in the game.  

The speed with which life comes hardly seems to allow the possibility of doing one thing at a time, being fully engaged in a single task.  I think it is fair to ask the question, does multitasking actually get more done, or does it just get less done on each of more things?  How much safer would the roads be if drivers did one thing, drive the car.  How many fewer errors in operating rooms would there be if the doctors, nurses, technicians all gave exclusive attention to what they are there to do.   

Rather than treating the simple daily tasks as throw-aways of little value, engage each one fully, experiencing every dimension of it, soaking in the sounds and smells and sights and textures and maybe even tastes.  Rather than measuring its importance by some external standard, allow its inherrant value to emerge, from the inside of the task. 

Do each task as if it is important.  It will become so, and with it meaning and purpose and value will be added to each day.  Caregivers’ lives are filled with mundane tasks, mundane, but important. 

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.

 

June 10, 2009

Who Makes Daily Decisions and How?

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Should we go to the Neighborhood Brunch or shouldn’t we?  It took at least three days to get the decision made.  The way I finally figured out whether Mary Ann wanted to go or at least was willing to go, was by jumping up to help her when she got up from her chair and headed out to the kitchen.  She was looking for the recipe for the Blueberry French Toast that has always been a hit at the Brunch and wherever else we have taken it.  She finally signaled her wishes by her actions.  it was 5pm in the afternoon of the day before the Brunch.  We had only a few of the necessary ingredients in the house.

Getting decisions made is an unbelievably difficult challenge in our household.  We have regularly played the “What do you want to do?” game.  We almost always played that game when it was time to go out to eat. It is a miracle that we ever actually got to a restaurant and ate.  The process of deciding where to eat always went the same way unless some external circumstances led both of us to the same idea immediately.  If it was time to eat and we happened to be near Bobo’s Diner, the decision was easy – still is.  The vast majority of times it went this way, I began listing every restaurant that I could think of until I named one that brought to Mary Ann’s mind a particular menu item for which she was in the mood. Sometimes that went on so long I started heading home out of frustration.

Some things have changed as the disease process has taken its toll on Mary Ann.  The Parkinson’s has softened her voice and slowed the mental process, making it difficult to respond to questions.  The Parkinson’s Disease Dementia (a Dementia with Lewy Bodies) has stolen even more decision-making ability.  Sometimes it is almost impossible for Mary Ann to get hold of what she is thinking.

Imagine trying to play the “What do you want to do?” game when the person being asked that question has absolutely no answer, no idea how to answer.  Please understand, that does not mean there has been any change in the wanting of certain things.   It is just next to impossible for them to locate that want, name it, and get the words out of their mouth.

As with most of us who are doing full time caregiving, much of the time I can read Mary Ann like a book.  I may very well have enabled her lack of responsiveness by figuring out what she wants without her having to say anything out loud.  We have been at this relationship for well over four decades.  I can usually figure out what she wants by analyzing the circumstances at a given moment and remembering what she has wanted a thousand other times in those circumstances.

Making a decision on anything other than routine matters where circumstances can easily be read is often a protracted and painful process.  I asked about the Neighborhood Brunch occasionally for a couple of weeks.  There was no reply, nor were there any non-verbals that gave a clue as to her wishes.

I suppose the question could be asked of me, why bother to include Mary Ann in the choosing.  Why not just make the decision and go with it.  For one thing, that is not how I function. Ask those poor folks who worked with me in a Team Ministry.  Being inclusive of everyone in the process of making a decision at work often makes for a better decsion and more likelihood that all the participants will be on board when it comes time to act on the decision.  On the other side of it, I know there were times when we processed things too long and everyone wished as the Senior Pastor, I would just make the decision so that everyone could get on with doing what we were talking about.  As I often admitted, I just wanted to work it out so that I wouldn’t get the blame if the decision turned out to be flawed.

Why include Mary Ann in the decision-making?  She deserves to have something to say about her own life.  Because of the Parkinson’s and the cluster of additional health issues, she has had stolen from her any shred of control of her own life.  She has always been strong-willed, so running roughshod over her wishes would not work.  She would figure out a way to stand up for herself, even if she might take a passive-aggressive approach.

I work very hard at trying to give her the chance to decide what we will do.  I usually try to guess what she wants and then frame the question about what to do by saying “would you like to [insert what I have guessed she wants to do].”  I often have to follow it with “just say yes or no?”

As the Satuday of the Brunch got closer, I became more specific about the options.  If we went to the Brunch it would mean having the hassle of making the Blueberry French Toast, but then we would have the valuable social interaction.  I probably said it in a way that would have revealed to the attentive that I was not much interested in the task of making the BFT.  For the last two days before, I tried the “do you want to go, yes or no?” approach a number of times.  There was no response, nor where there any non-verbals I could read.

By Friday afternoon, I was specific that if we were going to go, we would need to go to the store soon.  The recipe demands that the BFT sit overnight before baking.  Still there was no response.  I don’t remember how long after that attempt at getting a response she got up with that restlessness that indicates there is something she intends to do other than the usual.  It only took me seconds to put two and two together.  She was looking for the recipe.  We were going.

I have to admit that there is a part of me that resents that she had not given any indication sooner and that her decision meant I would need to get us to the store, come home, make the Blueberry French Toast while trying to include Mary Ann in the process of making it (harder than doing it myself).  I dreaded the fact that I would need to get up at least two hours earlier than usual to get myself cleaned up, get the dish out of the fridge to stand for thirty minutes, cook it covered for thirty minutes, uncovered for another thirty minutes, make the blueberry sauce that needed to be cooked just the right length so that it could be poured over the casserole just before serving it.  During that same time Mary Ann needed to be aroused, dressed and fed so that we could make it to the Brunch on time.

When all was said and done, the Brunch went well, the Blueberry French Toast was a hit (the huge pan came home completely empty) and we enjoyed the morning.

Making decisions is terribly difficult to do, but Mary Ann deserves to be a part of them.  As frustrating as the process can be, it is important that Caregivers and Care-receivers make decisions together.

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.

Added bonus:
BLUEBERRY FRENCH TOAST

12 slices white bread
2 8oz. cream cheese
l c blueberries / 12 eggs /2 c. milk
1/3 c. maple syrup

Sauce: l c. sugar l c. water
2 T cornstarch l c. blueberries
l T butter

Cut bread into l inch pieces. PLACE 1/2 in buttered 13 x 9 baking dish. Cut cream cheese into l inch cubes. Place over bread. Top with berries and rest of bread. Beat eggs. Add milk and syrup. Pour over bread mixture and chill overnight. Remove from fridge 30 minutes before baking. Cover and bake at 350 for 30 minutes.. UNCOVER and
bake for 30 minutes or until set.
SAUCE: in a saucepan combine sugar, butter, and cornstarch add water. BOIL for 3 minutes over med. heat stirring constantly. STIR IN BERRIES and reduce heat. Simmer for 8-10 minutes. Pour over French toast before serving

Mary Ann Tremain
Faith Lutheran Cookbook 6/25/02

 

May 6, 2009

A Caregiver’s Fear Realized – Hurt in a Fall

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One of my fears about falling was realized this afternoon.  We live in a very narrow margin of functionality.  We slipped outside the margin for a time today.  The result is an apparent need to change a pattern that has been allowing both Mary Ann and me moments of freedom from being tethered to each other. 

Yesterday morning was the procedure to remove another in a series of Basal Cell Cancers that have been appearing on Mary Ann’s back and upper chest.  The procedure was done in the Dermatologist’s office.  We like him.  He seems to be very committed to the field and always upgrading his knowledge and skills. 

His office, however, is right from the 1950’s.  It is very small, a narrow hallway leading to tiny rooms with pocket doors, bathrooms barely able to hold one person standing up, let alone somone in a wheel chair.  There is a nice flat screen television in the waiting room, among the old furniture.  The equipment doesn’t always work, but it is adequate, and procedures are done well.

The spot on the back of her shoulder was not large.  To guarantee that the perimeter of the patch of skin removed was clear of Cancer cells, a pretty large area of flesh was removed.  Each time a procedure has been done, I have watched each step.  The rooms are very small, so I always have an unobstructed view. 

It is always a surprise to me to see the size of the string of stitches when the the wound has been sutured.  In this case, it was at least a couple of inches long.  He sutures the lower edge of the epithelium, deep in the hole left after the circle of skin is removed.  That is a very tedious process, including a number of steps with each of the many stitches.  Then comes the suturing of the surface edges.  The round opening is pulled together into a line, not exactly straight, but close.  Again each stitch takes multiple steps. 

He made a point of closing the wound tightly since Mary Ann takes Plavix and aspirin.  The doctor observed that Plavix actually sometimes gives surgeons more trouble that Coumadin, a much more powerful blood thinner.  He wanted to be sure there would be no problem with bleeding. 

The day went well after the surgery.  Even though we had been given suggestions for dealing with pain, Mary Ann reported no pain.  The doctor called last evening to ask how she was doing.   There were no problems. 

Today was a good day in many ways.  Mary Ann went to her weekly small group meeting at church.  I was basking in the possibility of a water problem in our back yard turning into a beautiful garden and water feature.  Most importantly, some gossip came my way — good gossip.  The sadly empty building that used to be our Baskin-Robbins ice cream place — yes, I said ours, by squatter’s rights — may eventually open again. 

After lunch, I actually managed to do some cooking using a very complicated recipe.  Here it is:  Brown one large package of country style boneless pork ribs in a large frying pan, then transfer them to a crock pot, add a bottle of KC Masterpiece barbecue sauce and cook them forever.  The recipe is came to us from Larry and Jolene, when they brought over a huge and sumptuous meal.  My creative addition to the recipe is to open a couple of cans of beans and add them to the crockpot a half hour or so before eating.  Enough of the culinary diversion.

Mary Ann wanted a snack.  We had some ice cream.  She ate part of it and decided there was something in it.  I find those hallucinations to be especially annoying, since once they appear, the only alternative is to throw away perfectly good food for no good reason.   An hour later, Mary Ann popped up out of her chair, and as I suspected had decided she needed another snack.  I couldn’t pass up an comment on the last snack’s fate, and then I headed for the kitchen to see what I could find for her. 

I left her standing beside the transfer chair.  As soon as I got to the kitchen, I heard the familiar thump of her falling.  It was in an open carpeted area.  She hit nothing that might hurt her.  Normally, such a fall is just routine.  Not this time.  She landed directly on the shoulder that had been stitched up yesterday morning after the surgery on the skin Cancer. 

I knew it would be so, and as soon as I got her to the bedroom to look at it, my fear was confirmed.  The blood was running.  I headed for the case we have filled with first aid supplies we have gathered after past experiences like this.  I got a thick surgical pad and some tape to try to contain the bleeding until we could get back to the doctor.  The tape I had  (too narrow) combined with the awkward location of the incision resulted in blood seeping through to her clothing in spite of my best efforts. 

 I called the doctor’s office and was advised to do the obvious, bring her in.  The doctor had to send home a patient who had been stuck and prepped for a procedure because Mary Ann’s wound could not wait.  She had done something he had never seen before in his career (started medical school forty years ago).  She had torn open the two inch stream of stitches on the top and deep within the wound.   He had to start over completely.

The afternoon grew in complexity as it went on.  The doctor had sent home the other patient prepped for a procedure.  As he and two assistants were doing a cluster of preparatory tasks for Mary Ann’s repair, the doctor’s preschool-aged grandson came running down the hall.  He poked his head in.  He was not put off at all by what he saw.  Obviously he had wandered in on procedures before.  What added to a sort of chaotic tone that was developing was that the little boy’s mother. the doctor’s daughter-in-law came down the hall holding a cloth to her forehead.  She had run into a door and was also in need of stitches. 

The doctor left Mary Ann to attend to his daughter-in-law.   The assistants continued the prep, obviously a little unsure of how to proceed.  During that time the two assistants were sharing with each other their concern that they both had to leave and could not stay much longer.  One  had an appointment to take her two year old horse to be broken.  The other had to pick up her preschooler (who happened to be attending the preschool at the church from which I retired last summer). 

The doctor had done some preliminary work on his daughter-in-law so that she could wait until he was done with Mary Ann for her stitches.  When he returned, the imminent departure of his two assistants became clear.  The word went out to the office manager who had been with him for much of his practice to scrub up so that she could take over when the assistant’s left. 

Through all this, every time we checked with Mary Ann, she said she was fine.  She lay a long time on that table as he redid the entire suturing process.  It was long and tedious.  As time went by we all began to appreciate the craziness of how the afternoon was going.  They all commented on how uneventful the day had been up until we injected some drama into their day.  I told them that if it was okay with them, we would opt out of any future need for excitement being added to their day. 

The moment, Mary Ann is in bed.  As a her Caregiver, I have a dilemma.  First of all, I bear responsibility for what happened.  Had I been there with my hand on her gait belt, I could have prevented the fall.  Secondly, I was not calm and reassuring after it happened.  Instead, my frustration with the situation spewed out of my mouth.  Gratefully, I moved quickly and got done what needed to be done.  My dilemma is the implication this has for how I go about my Caregiving task. 

I have felt free to be in the kitchen for a time, go down the hall to my office to be at the computer for short times during the day,  go to the end of the block to get the mail.   At least until the stitches heal fully, this episode suggests that freedom no longer to be an option.  Mary Ann simply cannot keep from getting up and going.  I need to be there immediately to offer an elbow or put my hand on the gait belt. 

Tomorrow, I need to follow through on getting an audio-visual monitor from Babies R Us, or wherever I can find one.  If I can keep the receiver with me wherever I am in the house, maybe Mary Ann and I will not need to be joined at the hip every minute of every day.  That much closeness would all but assure both of us going completely crazy.   It would not be a pretty sight.

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.

 

April 29, 2009

Caregivers’ Unhealthy Eating Habits

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I just finished a piece of wonderfully decadent chocolate pie.  Life is good!

For a few months we are providing a place to stay for the Pastor who is now the Senior Pastor at the Congregation from which I retired nine months ago.  His children are finishing the school year before the family moves to town.  The Congregation is bringing a meal a couple of times a week so that he can have real food once in a while.  Cooking is not one of my gifts. What a treat it has been to greet people at the door, loaded down with containers of nourishing food, providing an entire meal including dessert!

What was the norm for meals before he arrived, and what will be the norm again when he and his family settle into the home they have found here, is not so lavish and nourishing.  On a good day, there may be a relatively nourishing full meal.  A good day does not usually come more than once or twice in a week.  I like vegetables, and I can steam broccoli and will do the same with the freshly picked asparagus I hope to find at a local country market in the next few days.

The reality is that our normal does not include daily home cooked meals, far from it.  There are some dynamics in our pattern of living that do not make healthful eating an easy thing to do.  I suppose that Caregivers who have had food preparation as an element of their portfolio prior to the addition of the chronic illness to the family, do a good job of providing regular.  Cooking was not part of my portfolio.

Among the dynamics of caregiving that works against eating regular, balanced and nourishing meals, is the impact the chronic disease has on the appetite of the one receiving the care.  In the case of Parkinson’s Disease and Lewy Body Dementia, one of the early signs is the loss of the sense of smell and taste.  I have in the past asked Mary Ann how she determines what she likes and dislikes since from long before she was diagnosed with Parkinson’s those senses had diminished.  I don’t know exactly how she answered, but my memory of what she said is that there are some flavors she can pick up, then there are textures and visual cues and just a general awareness of what she likes and dislikes.

One thing that many of the Lewy Body Dementia Spuoses online group say is that their Loved Ones like ice cream.  One said that a health professional told her that the taste buds that sense sweetness are the last to go.  Mary Ann could easily eat two large servings of ice cream a day if it was available.  I need to add quickly, that when I was growing up, at least during the summer months, I remember my parents and I heading to the Oatman Dairy for hot fudge sundaes (topped wtih salted pecans) pretty much every evening.  My taste for ice cream is legendary among those who know me.  Don’t start a conversation with me about ice cream unless you have a substantial amount of time to give to that conversation.

Here is one of the problems Caregivers have in their attempt at healthy eating and weight control.  It is the needs of the one for whom they are caring that take priority.  Especially when there is some level of dementia in the picture, food issues emerge.  Just finding foods that are acceptable is no simple matter. The house ends up filled with what the one affected by the disease will eat.

Sometimes there are diet restrictions placed on the one with the chronic or progressive disease.  He/she may have diabetes or heart disease added to the primary illness.  It would seem then that it would be easy to maintain good eating habits.  Not so!  When your Loved One is suffering from some sort of major debilitating disease that steals them much of what brings them joy, how can they be denied a few simple pleasures.  If Mary Ann likes ice cream, that is what she gets.  The ice cream may be a couple of scoops from Baskin – Robbins, or a Sheridan’s Concrete, or a Turtle Sundae at G’s Frozen Custard, or a Dairy Queen Blizzard, or a Pecan Caramel Fudge Sundae at the Braum’s Dairy an hour away.  She likes Glory Days’ Pizza.  She gets a couple of slices of all meat pizza once a week, providing her with two meals.  She likes burgers and fries and KFC and Long John Silver’s and Steak and Shake and a Steak Burger and Cheese from the Classic Bean. She loves sweet jello dishes with cool whip and sour cream or cottage cheese.  She likes bratwurst and sour kraut and beef and potatoes and pork roast and chops.  Lunch at home almost always includes handfuls of Fritos and a regular Pepsi.

Yes, she has heart issues and should not be eating red meat or anything with cholesterol.  Yes, she has had congestive heart failure suggesting a diet low in sodium.  But she also has Orthostatic Hypotension (low blood pressure episodes) that is controlled better when fluid is retained allowing blood pressure to remain at a higher level.  Salt provides that fluid retention.

After weeks or months or years of trying to negotiate the mine field of evil foods, after fighting endless battles on what should and shouldn’t be eaten, this Caregiver, and most with whom I interact have concluded that there is more to be lost than gained by continuing the battles.  What is the point of denying someone simple pleasures just to add some more years to avoid those simple pleasures.

One thing that militates against a Caregiver eating a healthy diet is that the house is filled with food that is not helpful to maintaining a good balanced diet.  Of course the presence of that evil food does not force the Caregiver to eat it!  Isn’t the obvious solution simply to have healthful foods in the house to eat as well as the evil foods?  It may be the obvious solution to the problem, but it doen’t work.

The real culprit that sabotages efforts at healthy eating is the stress that comes with the task of living on a roller coaster going at breakneck speed completely out of control.  Food is the drug of choice for Caregivers.  We may not be able to stop the roller coaster, but we can head for the kitchen and eat a bowl of ice cream followed by a handful (or two) of cheddar cheese flavored Sun Chips.  We can slather the back of a a couple frozen cookies spoonfulls of Nutella.  We can eat a heaping spoon of chunky peanut butter dipped in a dish of chocolate chips.  Caregivers’penchant for late nights provides plenty of time for more than one foray into the kitchen. If we can’t stop the roller coaster, at least we can treat ourselves while we ride.

This is where suggestions for solutions to the problem usually come in these posts.  If I had a solution to this one, I wouldn’t have 165 pounds hanging on a frame built for 145.  I guess I need to watch Oprah while I eat my afternoon snack.

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

 

March 16, 2009

Caregivers in Waste Management

Posted by PeterT under Daily Challenges, Practical Tools for Coping | Tags: , , , , , , , , , , , |
[2] Comments 

In the Caregiving business, it becomes evident very quickly, that our lives (all of us for that matter) revolve around activities of our alimentary canal — input and output.  It is how we survive.  There is input that brings with it the raw material from which is mined fuel for burning in cells of one sort or another so that we can simply stay alive — be who we are, do whatever it is we do.  Then there is what is left after the fuel has been mined.  In Picher, Oklahoma, there are toxic Chat Piles, a Superfund site destined for cleanup.  The output must be dealt with.  It is called Waste Management. 

For humans the management of input and output is primary parent activity.  Those tiny people after they pop out have clear goals in life: eat, sleep, fill their pants and cry (or coo) to manipulate the big people in their homes to manage their input and output needs. 

As adults, we often collaborate on the input.  Someone or both provide the resources for purchasing the food to be prepared for consumption.  There are any number of options for getting the food ready, maybe one does the grilling outside and the other deals with the range and oven.   For the most part, we do our own personal waste management. 

When Chronic illness joins the family, not only does full responsibility for input become the responsibility of the Caregiver, but sometimes output, waste management, becomes the full responsibility of the Caregiver. 

At the risk of becoming indelicate (there is nothing delicate about waste management), I now am in charge of output in our household.  Understand that “in charge” does not connote control of when, where and how much, just dealing with it when it does come. 

There are certain rules provided on the training CD.  One is that there will be multiple expulsions of wheat colored liquid during the night.  Those events demand help from the one in charge of waste management, so that what is expelled ends up in the bedside commode (Medicare will provide that tool).  By the way, the color is important.  Too much color (dark amber) suggests dehydration and the need for more liquid input.  Red means it is time to call the doctor. 

The rules say that at least one of those trips to the commode will happen during  the Caregiver’s deepest sleep, that deep sleep we are told must not be interrupted if we are to stay healthy and functional.   Some nights there are two or three trips, other nights many more.  It is no wonder that sometimes Caregivers are not always sharp and bubbly and upbeat about how things are going.  Anyone who tells a full time Caregiver to buck up and stop whining, other people have it worse, any such person may be harmed physically — at the worst it would be categorized as justifiable homicide. 

My task is simpler than those who care for male Loved Ones.  It is far easier to contain liquid waste that drops into the commode than that for which aim is more of a challenge. 

Then there is the management of solid waste.  Those who have Parkinson’s or some other chronic illnesses may no longer have the dexterity to reach the place most in need of being reached when dealing with output.  That is where the one in charge of Waste Management springs into action.  (That just sounded silly, but please bear with me.  I am trying to say all this in a way that doesn’t gross anyone out or embarrass the ones who to their horror are in need of such help).

The rules of solid waste management are these:  it comes when it comes, and often without warning.  Almost without fail, it comes in the middle of a meal.  I suspect I can move that transfer chair (wheel chair with small wheels for indoor use) from zero to thirty-five (the indoor speed limit at our house) in a matter of seconds — pants down and seated measured in fractions of a second.  My motivation?  Need I ask?  As the one in charge of waste management, it is my responsibility no matter where it lands.  By the way, it has come to be so, that performing my   duties does not impact my ability to finish eating the meal.  Sometimes I wish it would — every time I step on those silly scales at the doctors’ offices, the ones calibrated purposely to publicly humiliate anyone who stands on them. 

The rules of solid waste production also include emergency needs during trips out to social gatherings, grocery stores, restaurants, church or synagogue or mosque or society meetings.  It happened again tonight.  Waste Management has gender implications.  For those of us whose Loved One is the other gender, there are very unsettling complexities to fulfilling the role of chief of output. 

I dread it, just dread it.  No matter how understanding people are, a busy women’s restroom with multiple stalls is not a welcoming place for a man.  When she needs to go, she needs to go.  I have learned to seek out one-holers –  men’s and women’s restrooms that have one stool and a door that can be locked behind us.  Most Casey’s General Stores, some Arby’s, often Subway sandwich shops, some Taco Bell’s, some Pizza Huts, many small convenience stores have one-holers.  Of course the greatest invention in the history of humanity is the family bathroom.  Some newer rest areas, airports, Walmarts have them.  Gratefully, there is almost always someone around who can be enlisted to guard the door while we are both in the ladies room.  Then there was the time we entered a large but quiet ladies room, only to discover that while we were in there, a busload of thirty-one Second Graders came and were standing outside, their little legs crossed, while we had a substantial need to deal with on the inside.   

I suspect that other Caregivers share with me a quiet terror that lies in the recesses of our minds all the time, a fear fueled by horrible memories of past experiences with it — the dreaded diarrhea.  How many times have we changed bedding, maybe thrown away a mattress we just couldn’t clean, tossed clothing or sheets because we couldn’t face again the task of trying to get the stains out, scrubbed bathroom floors and walls, cleaned carpeted areas. 

I have to say something now that will probably seem sort of pollyanna in its tone.  I don’t like the job of waste management.  Sometimes it feels as it the smells will never leave my nostrils.  Sometimes it seems as if we cannot have much of a life as long as we are ruled by providing input and manageing output.  For me, it has come to be part of my job.  It is what I do.  It is neither good nor bad.  It just is.  When waste needs to be managed, it gets managed.  We use what we call pads (absorbant paper underwear), baby wipes, chuks (absorbant, plastic lined fold out sheets) for under the bottom sheet on the bed.  We put fitted plastic sheets under the mattress pad.  We have a bedside commode right there so that few steps are needed at night.  There are pads and babywipes in her purse.  We take just the right balance of over the counter Miralax and Senna to keep the activity somewhere between constipation and diarrhea. 

We do it for our babies, we do it for the people we love who can no longer do it for themselves.  It is the way we express the love we declare with our words.  However stupid it sounds to say it, I find Waste Management to be a nobel profession.  It is not for sissies.  When the job has been the most difficult and frustrating and messy, afterward (not usually during) I feel as if I have just been engaged in the game of life, living it to the full, not watching it go by from the sidelines.  I am somebody, doing something that actually makes a difference for someone I love.  By the way, talk about heros — thank a CNA (Certified Nursing Assistant) who serves in Waste Management at hospitals and nursing homes, next time you see one.   

There!  I did it!  I knew this had to be written.  I just didn’t know how to do it and when to do it.  Caregivers in Waste Management, maybe we could form a Union — however, no striking allowed.

 

March 15, 2009

Role Changes in Caregiving

Posted by PeterT under Daily Challenges | Tags: , , , , , , , , , , , |
[5] Comments 

I did it again yesterday, “do you want a sandwich, leftover casserole or scrambled eggs.”   Wouldn’t you know, this time, without having to use the “yes or no” question approach, she answered “scrambled eggs.”  Why did I even mention it.  Not only that, she asked if we  had bacon.  To my dismay, we did.  Then there was the raisin bread, toasted, buttered and topped with cinnamon sugar. 

I understand just how ridiculous it is to dread such a simple task — but it all needs to be done at the same time so that it can all be served hot.  Not only that, when it is done, there is at least one pan to be cleaned.  I don’t know about yours, but our automatic dishwasher will just harden cooked-on egg to be eaten with whatever is cooked next in that pan — hand washed — it needs to be hand washed — scrubbed with the little scrubby thing. 

This is not man’s work!  Before you get your nose bent out of joint (do noses have joints?), I understand that there really isn’t man’s work and woman’s work (other than the thing with the babies).  There are differences, for which we are all very grateful, but anyone can cook or wash clothes or mow the lawn or clean the house or change the oil on the car (if they can still find the place to put the oil in with all the stuff now to be found under the hood). 

It was not so when I was growing up.  If Dad wanted a cup of coffee and happened to realize it while standing in the kitchen next to the coffee pot, he would ask Mom who was sitting out in the living room to get him a cup.  She would do it!!  She knew just how much cream and sugar to put in.  By the time it was ready, he would be sitting in the living room, waiting to be served. 

He was a good man.  He was not harsh or demanding.  He took care of the car and the plumbing and the household repairs.  He mowed the lawn, planted a beautiful garden of flowers.  He grew vegetables by the acre when we got the land in the country.  It was just clear who did what. 

By the way, Mary Ann would most certainly never have gotten me that cup of coffee.  I shudder to think where it would have ended up if I asked.  She was hardly shy and retiring and certainly no domestic goddess.  But she grew up in the same era in which I grew up.  Our roles were pretty traditional.  I was the boss of the car and the outside stuff, and she was the boss of everything else.  If there is any doubt who was the boss, I rest my case with this piece of evidence: She ruled the remote control.  Enough said?

When Parkinson’s joined our family, things began to change.  By about a half dozen years into our new family configuration, with Mary Ann working almost full time to help get the kids through college, there was not enough stamina for her to go to work each day and come home to domestic chores. 

Roles changed.  I began to include some vacuuming, and clothes washing and bathroom cleaning.  I know full well how silly it sounds to say that as if it is some sort of a noble thing to have done.  Of course we should share duties as spouses, no matter our circumstances.  As time went by, Mary Ann was less able to do any of the household tasks, inside or outside.  I have come to have profound respect for single parents who must work full time to survive, deal with inside maintenance, outside maintenance, all the while filling the needs of little ones who are full of needs all the time.  I am in awe of those who have lost a spouse and must take care of everything while battling that deep and relentless loneliness that so often washes over them. 

As Mary Ann will say whenever the topic of cooking comes up “they won’t let me in the kitchen any more.”  You can guess who “they” is.  You don’t know real fear until you have seen someone whose arms and legs are waving this way and that, uncontrollably, while holding recently sharped Cutco knives.  The Parkinson’s meds produce those movements as side effects after years of taking those meds. 

While it is irrationally fearful to us, many Caregivers struggle to do the tasks our Loved Ones did before the chronic disease.  If  you have never paid the bills, or balanced the checkbook or used online banking, or entered checks in Quicken, it can be terrifying to do so.  If you haven’t learned what ingredients go with what, how long things cook, how to tell when they are done, how much salt or garlic powder or cumin or soy sauce goes with what quantity of rice or vegetables or meat, just throwing a meal together is a formidable task — give me Mount Everest, I’ll climb that, you fix dinner. 

Again, I suppose this sounds silly to those of you who can fix a toilet and cook a meal.  When it is just you, filling all the needs of someone who desparately needs you to do so, and trying to do everything that the two of you used to do, yes, when you are a woman doing man’s work or a man doing woman’s work, when you are doing it all, sometimes the smallest task seems hopelessly impossible.

One solution to the dilemma is to let go of whatever illusions may remain about what tasks belong to whom.  The tasks have no gender.   They are just things that need to be done.  Very ordinary people, just like you and me can learn to do any of them.  We actually can learn to do some of those seemingly impossible jobs.  Some of them don’t need to be done.  We just think they do because they always have been in the past, or others might judge us if we don’t do them.  We can dare to ask for help doing some of them.  We can use some of our limited resources to pay someone else to do them.  Our survival, our sanity, our need for some quality of life is worth it. 

Can you believe this all started over some scrambled eggs, microwaved bacon and a piece of toast?  Tonight I made stir-fried pork, vegetables and rice.  Who knew I could do it???  (Please do not invite me to a Pampered Chef party — unless, of course, it is held in the tool section of Home Depot.)

 

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