November 2009

I just went back into the bedroom for one of very many times so far this evening to check on her.  When I asked her what was causing her to be so restless, she answered, “I’m disoriented.”

She has been moving around in bed this evening, lifting herself up on her elbows and looking around.  I have become conditioned to head to the bedroom when I see much movement on the 7″ baby monitor screen on my desk next to the computer monitor.  I move fairly quickly so that she doesn’t get up and try to walk on her own.  Especially when she first gets in bed after taking her night time meds, she is vulnerable to falling due to the drowsiness that is a side effect with a couple of the pills she takes at that time.

Clearly the drowsiness has not been enough to send her off to sleep tonight.  She did not sleep well last night.  It is surprising just how much impact one restless night has on her.  She has been doing lots more hallucinating today.  As usually happens, she got up early this morning, after not having slept much at all last night.  She fell a couple of times trying to pick up things that were not there.  She popped up often from her transfer chair, sometimes unsure of what she was getting up for. 

She went back to bed after being up a while this morning and slept about three hours.  I was glad she got some sleep.  The more tired she gets, the more she struggles with hallucinations, tracking mentally, keeping her balance when walking, among other things. 

Tonight, she is just struggling to settle down to sleep.  The last time I went in she said that she was feeling guilty that the house was not clean for the cleaning lady.  I reminded her that the monthly visit from Kristie would be Wednesday, and it is only Sunday evening.  Earlier, when I was getting her ready for bed, she thought she heard the voice of the main character on her favorite television program, the Closer.  She knows that the show airs on Mondays.  She was convinced it was Monday evening.  I reminded her that just an hour before then we had returned home from going to the Evening Service at church.  Somehow even that did not seem to satisfy her. 

The next time I came she was getting completely out of bed.  She said she was looking for things to do to get ready for the cleaning lady.  As we talked about it, she asked what I did to prepare for her coming.  I described the prep I usually do, taking things off the table so that she can get to the top to clean it, taking things off the kitchen counter, putting all the toiletries in the baskets on the bathroom vanity, just general straightening up to make her job a little easier.  I reminded her that there would be no point in doing that prep work until Tuesday evening or Wednesday morning, otherwise it would all be spread out again by the time Kristie came. 

It always seems odd to me when Mary Ann juxtiposes a very lucid comment (that the cleaning lady comes this week) and confused perceptions (what day it is today).  That is the nature of a Dementia with Lewy Bodies.  Parkinson’s Disease Dementia is such a dementia.  Unlike the general pattern of steady decline associated with Alzheimer’s Dementia, LBD changes for the better or for the worse very quickly.  Someone with LBD can be very lucid one minute and completely confused the next — then moments later return to lucidity.  That characteristic often causes friends and family who do not interact with the person with LBD on a daily basis to be fooled about how serious the disease is.  Those with LBD are notorious for moving into what we (Caregivers) call “showtime” when family or friends or strangers are present, creating the illusion that they have not problem at all. 

Again, it just surprises me to see how much impact one restless night can have.  She really has seemed to be very lucid the last few days, at least most of the time.  I guess I should read the last few days’ posts to be sure about that.  I forget so quickly from one day to the next how things have gone.  It is like trying to remember what you had for lunch two days ago.  Sometimes the routine things just don’t make enough of an impression to find their way into the memory bank, at least into the branch from which subsequent withdrawals can be made with ease. 

She has been in bed for about three hours now and has been restless most of the time.  The thought just crossed my mind that some of the restlessness may come from concern for our Daughter, who is having surgery tomorrow.  It is a surgery that is considered outpatient but will include one night of monitoring her during the first hours after the surgery.  Mary Ann may not be able to identify the true source of her inability to settle.

For the moment, all I can do is hope that she (and I) sleep better tonight than last night. 

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There are a couple more of observations on Mary Ann’s appointment with the Cardiologist, Dr. M, on Friday that have come to mind today.  They were comments that he made may be of interest to other Caregivers and Spouses.  I mentioned them in passing in last evening’s post, but they seem to me to warrant more reflection.

As I mentioned in last night’s post, I had brought some information from the Internet on a medication that seems to offer a an option for keeping Mary Ann’s blood pressure up when she is standing, to keep from fainting, without raising it when she is lying down, the time it is already too high.

I had brought the information to his office earlier in the week to allow time for him to look it over.  He didn’t see it until he studied the chart before coming into the Examination Room.  He did take time to read what I had brought.  When he came in he said that he thought the medicine sounded very appropriate.  In fact, he indicated that he appreciated the information and would consider using for others when the need arose.

He added that he was not at all uncomfortable with patients bringing in information.  He did not perceive it as a threat.  Not only was I grateful to hear that, but it impressed me as an attitude that any of us, Caregivers or patients, should look for in a doctor.  Dr. M is confident enough in his role, that he is not afraid to deal with any sort of question or suggestion.  He will answer the question if he can and tell us if he can’t.  He will take suggestions when they are good ones, and explain why if they are not good suggestions.

I have the advantage of being in an online group of folks who have all had years of experience dealing with Lewy Body Dementia and often Parkinsonism if not Parkinson’s Disease itself.  The thoughts and ideas and suggestions there are very helpful since they have been tested in real world situations.  One thing may work for one person and not work for another, so the suggestions can only be just that, suggestions, when taking the information to the doctor.  Bringing an arrogant attitude to a doctor’s appointment is sure to produce an unpleasant result.  I suspect that doctors feel the same way about arrogant Patients and Caregivers as Caregivers and Patients think about arrogant doctors.

Another conversation the Cardiologist had with us was triggered by my asking if the Congestive Heart Failure that took us to the hospital actually demanded a hospital stay.  I told him about the tough time we have had since the hospitalization.  He suggested that if we come again, we ask if it would be possible to monitor her situation for a few hours rather than admitting her right away and starting a regimen of medicine administered intravenously. Again, if we explain our reason for asking rather than simply being demanding, it might impact the doctor’s decision.

Dr. M made the observation that doctors factor in their assessment of the Caregiver or Patient’s wishes concerning whether or not they want to be admitted.  I inferred from what he said that there is a sensitivity about whether or not Caregivers and Patients feel able to handle the situation at home, when deciding whether or not to admit the Patient to the hospital.

We have a pretty good system here at home for dealing with Mary Ann’s problems.  If (when) we end up in the Emergency Room again, we will evaluate carefully the value of being treated at the hospital against the toll a hospital takes on her ability to function.

In Mary Ann’s case, that might have meant getting the shot of Lasix and checking the Cardiac Enzymes for a few hours to see if they stayed the same or declined.  While sometimes I feel pretty overwhelmed by what is already needed to give the care that is necessary, I think we would even be able to deal with IV meds at home, as long as a nurse put the IV in, and a nurse would be on call in case it got pulled out and needed to be inserted again.  It is too bad that our system of medical care does not make more allowances for care to be given at home.   It is easier on the patient (more rest) and it would seem to be less costly.

The day was quiet.  PBS had a number of specials today with Celtic music.  I told Mary Ann that I wanted to take charge of the television today and watch them.  As I have metioned before, in our division of duties, she is the boss of the TV remote control.  She stayed awake to listen to the music with me.  She ate pretty well.  She has been a little restless tonight.  I hope she settles in for the night soon.

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In forty years of calling on the sick, I can’t tell you how many times I heard from people who had gone through a surgery after they had recuperated, “I didn’t know how bad I felt before I had the surgery until now, now that I feel good again.”  I don’t think I realized just how heavy the weight was that I felt, thinking Mary Ann was declining at a faster and faster pace.

I can’t know how long the feeling will last since this is such a roller coaster ride we are on, but for the moment, it feels as if a deep and heavy sadness has been lifted.   Like a little child, I tend to act out when I am struggling with something.  I act out by getting grumpy.  I make no promises to anyone that I will now be nicer for a while, but there is a profound sense of relief.

Our Cardiologist, Dr. M, was a parishioner for the last dozen years of my ministry.  We have come to appreciate him very much.  He combines a lot of traits that a patient looks for in his/her doctor.  He takes the time to listen well.  Not only that, but he takes what the Patient and Caregiver have said into account when making decisions.  He is decisive in a way that respects those whose lives are impacted by those decisions.

He has made clear that he is not in the business of predicting the future and cannot answer the “how long” questions.  What he will do is disclose what he knows, analyze it and make a logical assessment of the situation.  While I am always looking for something that help clarify where we are on our journey, there simply are not definitive answers to my questions.

Today, I took an approach that allowed Dr. M to analyze the data with me and compare where we are to where we were eight months ago (the last round of tests).  He also looked back farther so that we could get a sense of the trajectory we are on, at least in terms of Mary Ann’s heart and kidneys.  The Neurologist is the one to ask about the Parkinson’s and Parkinson’s Disease Dementia.  The heart issues in particular provide the most concern in terms of longevity.

Dr M’s look at some key indicators seemed to reveal, that while Mary Ann’s heart and kidney health has declined, in most ways she has been moving back and forth along a pretty level trajectory.  Her numbers have been worse at times in the past than they are now.  They also have been better than they are now.

The conclusion seems to be that Mary Ann is fairly stable, not on a trajectory that is taking her quickly toward free fall.  Mary Ann and I are fully aware that something precipitous could happen, but the truth is, that is so for all of us.  The Parkinson’s itself has been moving very slowly.  There are not likely to be dramatic changes in its progress.  The Parkinson’s Disease Dementia, is another matter.  It is very unpredictable.  It changes in fits and starts and can turn on a dime in a new direction or return to a better place thought never to be seen again.  Other than trying to control the Autonomic malfunctions to the degree we can, we have only the Exelon patch to help with cognitive issues.

As to her heart and kidneys, it is the high blood pressure that is the enemy.  Today Dr. M responded favorably to my suggestion that we consider the addition of  Mestinon to Mary Ann’s medication regimen.  That drug has the potential of helping control the fainting by raising her BP only when she stands up, the time it drops thereby precipitating a fainting episode.  It is an off-label use of the drug, but there are no major concerns that militate against trying it.  It does not conflict with anything she is currently using.

My intention is to cut in half the dosage of the Midodrine (okay with Dr. M) for a few days, then add the Mestinon. It is always wise to change only one med’s dosage at a time so that any problematic changes that might occur will be easier to trace to the source.  I will try to take her BP as often as possible and ask our Parish Nurse if she would stop by to check it also. The goal is to use as little Midodrine as possible since it raises BP all the time, not just when standing.  BP is highest when lying down, since it does not have to fight gravity.

The information received today through Dr. M’s analysis helps in a couple of ways.  Both Mary Ann and I perceived what he said in a positive way.  I feel a sense of relief that revealed just how down I had felt about her perceived decline.  We understand her to be pretty stable and on a fairly flat trajectory in the progression of the heart and kidney problems.  Another way that we are helped by having more clarity on where we are in this journey, is that we can use our ability to deal with the challenges more efficiently.  We can’t afford wasting our days fighting things we cannot change.   We can’t afford to waste our energy because we are in denial about the realities of our situation.  As I have said before, a certain amount of well-placed denial can be very helpful in living through our days as meaningfully as possible.  However, we need to know what to accept and what to fight.  We don’t want to accept something when we should be fighting it, nor do we want to fight something that it is time to accept.  Today helped us better discern what to fight and what to accept.

At least tonight, my assessment is that I had moved toward acceptance of a more rapid decline than is actually happening.  I feel more bold now about stretching the limits of what we are doing.  I will, of course, not be foolish about tackling things that put us at an unhealthy risk.  A certain amount of risk, however, is necessary to stay alive and well.  After so many years of practice, we have ways of dealing with most of the problems that arise when things do not go well.  If we try something and it goes badly, we will deal with it and try something else.

I guess it has been a good day!

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Maybe this will be our new Thanksgiving tradition, barbequed ribs, pork and brisket with stuffing on the side.  The meal was tasty, lots of food, great desserts, both pumpkin pie and Baskin & Robbins Grasshopper Pie for Granddaughter Chloe’s birthday treat.

Mary Ann seemed pretty tired today, especially in the morning before the kids came.  She did not talk much during the day, but Son, Micah, got her to laugh a few times. He has a way of connecting with her that is fun to watch.

Chloe is, of course, a breath of fresh air.  She is warm and engaging always making clear to both her Grandma and her Grandpa that we are loved.  She is such a sweety.

Becky brings a brightness and positive energy with her that lifts us up.  She treats us with love and respect, always thoughtful of our unique circumstances.  She always provides relief from the cleanup task by insisting on doing it for us.  That gift does not come from some automatic domestic role expectation, it is an intentional and thoughtful act of generosity, offering me some respite from the task.

Chloe and I did a little bird-feeding together.  Micah helped with a clean up of some of the Cypress needles that had fallen into the lower area of the pondless waterfall installed last summer.  I described to them plans for a possible remodel to the back of the house that would provide additional indoor space with lots of glass so that we could enjoy the waterfall and the birds more than we can now, since there is no easily accessible view of the water fall from inside the house.  No decision is made on the project, but the decision-making process is in motion.

Later in the afternoon, Micah shared something he had been thinking about.  He has plenty of access to information on my side of the family in terms of health history.  My siblings are all living, and over the years he has had a fair amount of contact given the geography with cousins.

Micah noted that he has very little knowledge of his Mom’s side of the family.  Only Mary Ann’s Mother was still living when Lisa and Micah were born.  Two of her three brothers died, one of Lung Cancer and the other of Acute Leukemia, when Micah was almost too young to remember.  The third brother chose to alienate himself completely from the family at the death of their Mother.  It is pretty much too painful for Mary Ann even to talk about.

As a result, Micah did not have a chance to get to know her family other than her Mother.  The same is so for Lisa, although, since she is three and a half years older than Micah, she probably has a few more memories of her Mom’s brothers.

What developed from the conversation was the idea of our traveling back to Northern Illinois to visit with Mary Ann’s two deceased brothers’ families to hear stories about them that will help fill in that void of knowledge.  The email has gone out to see if there is a possibility of having a family gathering to reminisce and share stories.

After a nice time on the phone with our Daughter Lisa, who shares her brother’s interest in connecting with their Mom’s family, Mary Ann has settled into bed, and I have been thinking about Mary Ann’s family connections.  She loves and is loved by her family.  The death of her Father, a few weeks after we were married, the deaths of her two brothers (each one at the age of 51), being hurt so deeply by her other brother as that relationship was severed, and finally the death of her Mother, left Mary Ann feeling very much alone.

Her Sisters-in-Law and her Nieces and Nephews seem to love and respect Aunt Mary very much.  She is not only separated from them by geography (a ten or twelve hour drive demanding two days of travel for us to get there).  She cannot talk audibly on the phone, or react quickly enough to maintain a conversation on the phone.  Sometimes she can’t get any words at all to come out.  She hasn’t been able to write legibly for the last few years.  She cannot negotiate a computer keyboard or control a computer mouse.  It is frustrating to her and to those who long to interact with her.

I hope something materializes that will allow our children a window into Mary Ann’s family, and a chance for Mary Ann to feel part of a family of her very own.

Tomorrow afternoon is the first meeting with our Cardiologist after the trip to the hospital for Congestive Heart Failure three weeks ago.  He was out of town at the time of the hospital stay.  I delivered to his office a letter and attachment requesting consideration of a change in meds that might help with the fainting while not raising her blood pressure when lying down.  I intend to report on that visit in tomorrow evening’s post.

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There were dirty pans and bowls and silverware everywhere!! How on earth did I get myself into this! We are not talking about anything that took so much as a shred of culinary skill. Stuffing and Broccoli salad are about as uncomplicated as food preparation can get, but it seemed like a monumental accomplishment to this very reluctant cook.

The plan for Thanksgiving seemed so simple.  There would be nothing resembling cooking.  Ribs, chopped pork and brisket along with a side dish would be picked up from the ToGo counter at the newly opened Famous Dave’s Barbecue nearby.  Our Son, Daughter-in-Law and Granddaughter are coming from Kansas City, an hour away, to join us for a while on Thanksgiving.  We will celebrate Granddaughter Chloe’s eleventh birthday at the same time.  The actual day was a week ago.

When we were at the grocery two days ago getting some odds and ends, Mary Ann’s feet hit the floor bringing the wheelchair to an immediate stop.  By the way, the pain that translates into my forearm (I push the chair with one hand and pull the grocery cart with the other) whenever those rubber soles so much as touch the tile floor is memorable.  The chair stopped in front of the bags of Pepperidge Farm seasoned stuffing 0n display.

I reminded Mary Ann what the plans for Thanksgiving, did not include turkey and trimmings this year.  We went on to get some other food items.  For some reason we had to double back and pass by the same display.  Those feet hit the floor again. We will have ribs and dressing tomorrow.

She wanted dressing, so we will have dressing.  At times like this, Mary Ann just moves back to a time when she was still cooking and needs to prepare food as she did before or early in the Parkinson’s.   Now, I am the one who needs to bring her intentions into a reality.  With Mary Ann in the kitchen, I made the dressing.  There were onions to be chopped along with celery.  They were cooked in butter for a few minutes, followed by the addition of the Pepperidge Farm dressing and liquid (chicken broth in a box) to the pan.  Then an apple needed to be cut into small pieces,  pecans chopped, a few handfuls of raisins, dried Cranberries, cut up apricots and dried blueberries put in the measuring cup.  All of them were added, folded in and the final product was put in baking dish, ready to for the oven tomorrow.

Then came the Broccoli salad prep.  Out of the blue yesterday afternoon, Mary Ann decided we needed to make broccoli salad.  After the stuffing was in the fridge, the broccoli heads needed to be transformed into very small pieces of broccoli.  Another onion, this time chopped into very tiny pieces, more raisins, dried cranberries and dried blueberries were all mixed together.  We happened to have in the freezer the requisite bacon bits to mix in also.  A bottle of salad dressing was added to the mixture, which then went into the fridge to marinate.  Tomorrow a cup of sunflower seeds will be tossed in just before serving.

At this point, with stuffing, broccoli salad, Cranberry celebration from the deli counter at the grocery, a Copper Oven pumpkin pie and a second pumpkin pie from Mary, along with Cool Whip for the pie, we may as well have gotten a smoked turkey, made mashed potatoes and had a traditional Thanksgiving meal. As it is, it will be a very interesting Thanksgiving meal.

I was, of course, ambivalent about tackling even those simply made dishes.  My first reaction to Mary Ann’s suggestions included a twinge of resentment that I would be the one required to do that actual preparation.  I realized it would be a good thing to do that food preparation because Mary Ann would be pleased having the items at the table as the food she brought to the meal.  It would give us some time during which we would both be focused on the preparation task.

Both food items are now prepared and in the fridge.  As the day wore on a supper meal also had to be prepared.  More onions, some bratwurst that had been browned, sliced apples and Bavarian style sauerkraut all cooked together to flavor one another served as supper.

I have no idea how it is possible to end up with so many dirty pans and utensils, cutting boards, bowls, measuring cups, and dishes — and these were simple dishes to make.

When the time came to decide what we would do about the evening Thanksgiving service tonight, Mary Ann had used up her day’s energy.  She was in bed before the Service would have concluded.  In years past we attended the Thanksgiving Day morning service, which was discontinued this year.  It was a smaller group, making it easier for us to negotiate, and it was at a time of day that was easier for us to manage.

Mary Ann did pretty well today.  There was no nap, but she is still having a little trouble settling.  Hopefully she will sleep most of the rest of the night. Tomorrow is a big day.

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.

“Today I read an article in Web MD that male caregivers were more likely to leave their wives than female cg to leave their husbands, so kudos to all you guys that have stayed with your wives!!!”

That is a quote from one of those in the Caregiving Spouses group.  It started a stream of posts wondering why that might be so.  In that stream of conversation came the statistic that 40% of Caregivers in general are male.  I am reporting what was written about male Caregivers.  I have no formal verification that what was reported is accurate.

Assuming that more husband Caregivers leave their wives than the other way around, there are some things that I and others mentioned might be part of the reason that is so.  It is hard to talk about this without unfairly stereotyping men and women.  As is the case with most generalizations, it is not true that anyone is bound to be a certain way.  Each of us is unique and needs to be judged on who we are and what we do, not some external sterotype.

With that said, my generation and my parents’ generation grew up with certain assumptions about the roles of men and women that may play into how each does in the caregiving role.  I can remember my Dad standing in the kitchen, the room with the coffee maker, calling out to my Mom, asking for her to get him a cup of coffee.

Dad was not harsh and demanding, it was just the way it was.  Mom wasn’t meek and mild, she stood up for herself, but it was just the way things were done in our household.  By the way, even though I grew up that way, and Mary Ann did as well, I would never have gotten away with such a silly request.

The culture of roles in my experience was that men were often not raised to be caregivers.  Mom did the cooking and cleaning and child-rearing, and Dad went to work, took care of the home repairs and outside maintenance of the house and yard.  He also took care of the finances.  Mom and Dad talked about decisions.  It was not that Dad ruled.  They just each had roles like the ones they grew up with.  Dad was born in 1901 and Mom in 1907.

Dad bowled, golfed, watched boxing and wrestling on television (after we finally got one when I was eleven years old).  Mom did lots of sewing, was active at church, doing what then was perceived to be women’s tasks, most often serving others in some way or teaching children, singing in the choir.

For those men who grew up in that sort of setting, taking care of someone else was moving into pretty foreign territory.  I have to admit, that the caregiving model of behavior has been quite a stretch for me.  I grew up at least as self-centered as most males of my generation (again a risky generalization).  I am flying by the seat of my pants here.

I joke about not doing a good job of providing meals.  While I am a reasonably intelligent person and certainly am capable of cooking a meal, the pattern of what to do and when to do it when cooking is not in that portion of the brain that I call automatic pilot.  It is the place in which the “never forget how to ride a bike” sort of information is kept.  Every time I think about preparing a meal, I have to start from scratch, figuring out every element of the task as if I have never done it before.

Yes, I put colors and whites together, cram the washer full and just switch the dial to cold water only so that everything won’t come out the same color.  Sewing buttons on is a ridiculously challenging task.

I suspect that for some caregiving husbands who bail out on their wives, the difficulty of the tasks, their inexperience with doing them, their selfishness and stereotypical view of who should serve and who should be served, combine to overwhelm them, and they just run away.

It seems to me that whether male or female, there is one simple reality.  We made a promise out of love for one another.  We gave our word.  To run away seems silly.  To where would we run?  Our broken promise would go with us wherever we went.  What exactly would there be to be gained that would be worth having?

I have had the privilege in forty years of ministry to be allowed to see into the most intimate corners of the lives of many hundreds of people.  For the most part I have seen men and women alike who love and care for one another, honor their commitments and keep their word to one another.  It is the way to live with meaning and purpose the lives we have been given.

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.

Mary Ann’s day seemed to go reasonably well.  There was no napping, although a few times during the day her head hung pretty low, resting on the arm of her transfer chair.  Each time I asked her if she wanted to go in the bedroom and nap or stay out in the living room, she opted for the living room.

Zandra, her bath aide, came this morning, but she was pretty sleepy through the shower and getting dressed.   By lunch time, she was open to going out to get something to eat.  She did pretty well with a hamburger cut into quarters.  She let me cut it into quarters for her, but she would not have tolerated my putting it to her mouth to help her since we were out in public.

After lunch, we headed to the grocery store.  As tired as she seemed, she loves going to the store and reminded me that I had mentioned that possibility.  It is still a marvel to me how it is possible for us to go through so much food, as little as Mary Ann eats.  A few items on the list always seem to grow to a basket full.

After supper (Mary’s pork, dressing and gravy), Mary Ann watched television for a while, went to bed, got up again to watch some more televison in the living room, then returned to bed, where at the moment she seems settled.

In between lunch and the grocery, we drove up to Cedar Crest, and while Mary Ann sat in the car, I took about a mile long walk.  That is the first time I have walked for exercise since before the trip to Hot Springs.

My excuses for not keeping up with the exercise walking that began a few weeks ago are legion:

First, there was a break in the pattern that had developed.  The trip to Hot Springs was the first break — about a week.  Then came the hospital stay.  The walking was beginning to take on the character of a habit before the break.

Then, the hospital stay wore us both out.  I was pretty tired when we got home.  Mary Ann was dealing with such confusion and a lower level of functionality pretty much precluding my leaving her to walk.

Those first days back from the hospital, she slept pretty much all day long every day.  I couldn’t leave the house for a moment while she was sleeping.

After a while, she was and still is often getting up pretty early in the morning.  Before the trip she was doing so well that I felt comfortable walking for about a half hour before she got up for the day.  I always made sure she had gone to the bathroom, and I put the Lifeline button around her neck.  When she gets up early, walking is not an option.

When Volunteers have come recently, once I did take a walk.  The other times, the weather has been bad, or I just decided I was too tired to do it.

The last few weeks after the hospital stay have seemed especially stressful.  That is my excuse for returning to eating endless snacks to provide a treat, or just give me something to do to self-medicate.

It is true that working out times to walk has been more difficult in these past weeks.  The trouble with that truth is that it is not the only truth in this situation.  I am a resourceful person.  With enough commitment and will power, I should be able to figure out how to get regular exercise.

And, of course, no one is shoving the food into my mouth.   If there will be food in the house or food on the table, I am the one who will put it there.  It is not as if I have no choice about what ends up on that table.

My excuse relative to food, is that I am trying to give Mary Ann things she likes and she needs lots of calories.  Of course, I do not have to eat the same thing she is eating.  It is my choice.

I have cancelled, at least for the moment, the exercise and weight control program at the exercise therapy clinic that I was going to begin after the trip.  After the hospital stay, Mary Ann was doing so badly for a while that I didn’t think it would work to try to have her with me, sitting in on an exercise class.

Mary Ann is enough better that I should be reconsidering starting that program.  Now with the holidays looming, that excuse has kept me from making the call to set the appointment.

Under the best of circumstances it is hard to develop and maintain a good set of self-care disciplines.  We are not in the best of circumstances.  All sorts of excuses to avoid good eating and exercise habits are readily available.  The irony, of course, is that good eating habits and good exercise habits translate directly into feeling better and being better able to do the task of Caregiving.  Sometimes we are our own worst enemies.

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I knew it would happen!  It was not a disaster, just inconvenient timing.  In the middle of the prayers in the Evening Service at church tonight, Mary Ann whispered, “I need to go to the bathroom.”  That she did not wait for a more opportune moment to say something made clear to me immediately that we were not talking about a minor matter.

I have seen the dark cloud gathering the last three days as there was virtually no intestinal activity.  I know, are we never happy?  In some recent posts I have mentioned the bit of something close to diarrhea that came after the hospital stay.  That stopped and Mary Ann started eating better.  It was not rocket science to figure out that at some point, three days of eating well and producing little would at some point produce a lot.

At certain points in the prayers tonight, when information on the next petition request was being gathered, I moved to the lobby area, got the wheel chair and returned to the pew.  As soon as the prayers were done, a seemingly interminable length of time, I got Mary Ann into the chair, and we burned rubber taking off to get to the women’s rest room.  Mary (who schedules the Volunteers from church for Mary Ann) was available and willing to guard the door to the restroom.

While we were in the the women’s room together, Mary Ann can’t deal with that particular matter by herself, a number of ladies needed to be turned away.  Gratefully there are rest rooms on the lower level also.  One person was in such need that she headed into the men’s room while Mary watched the door for her.

Actually, I had anticipated this problem earlier in the day. As the dark cloud loomed, I expected two or three days of work getting the job done.  I thought it might begin soon, so I added a package of flushable wipes to the contents of Mary Ann’s purse when we left for church this evening.

The time at church began with a Thanksgiving dinner provided by our Junior Youth program.  The food was great.  The two youth at our table, Trina and Makynna, did a great job of serving. They also participated in the table conversation, noting afterward that the two men at the table seemed to do all the talking.  Eddie and I just have lots of things that we are convinced need to be said!

The meal was followed by the worship service.  I thought that being out for such a long time this afternoon/evening would increase the likelihood of her intestines becoming active.  As inconvenient as was the timing and how long it took, the activity seems to point to a return to more normal and regular production. That is a good thing.

Those of you who are Caregivers can appreciate the observation that intestines rule.  One of the main reasons we make virtually no commitments that can’t pretty easily be cancelled at the last minute is the unknown of when intestinal activity will happen.  One of the earliest posts I wrote last winter described one of the areas of responsibility in a Caregiver’s portfolio as waste management.

I guess the counsel for Caregivers is that we learn to take in stride the duties that  come with the the role of Waste Manager.   We may as well concede that the colon has been crowned king.  Otherwise we will squander precious time being frustrated, grumpy and feeling sorry for ourselves. I suspect we have already spent enough of the few days we have on such self-defeating pursuits.

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.

Mary Ann got up early this morning since she had no supper last evening, other than a couple of snacks during the night.  She ate a good breakfast with help, took her pills and ended up back in bed for almost four hours. 

She ate a pretty good sized lunch, and we spent a while just sitting with the television on.   Actually, I tend to be up and about doing anything I can think of to keep from just watching television.  I was back and forth to the computer, outside to check on the birds, got the mail, paid some bills. 

Finally I asked Mary Ann if she would be willing to head out for a bit, even if she just sat in the car while I did a couple of things.  I had mentioned that I wanted to visit a small but nice art gallery on a local college campus.  Our deal was that I would just go in for a short visit, assuming she wanted to stay in the car.  That seemed to be her intention.

I had reached the point in the day that I just could no longer tolerate sitting around the house on a warm day, cloudy, but warm enough to be out.  Gratefully, she decided she would go into the art museum with me.  It took a while to find the handicapped entrance, on the opposite end of the building from the handicapped parking places. 

Once inside, there were two major exhibitions that were very interesting.   One is called “Stickworks.”  It is pretty much indescribable.  There are huge sort of huts on the lawn of the museum.  People can walk into and through them.  They are made from intertwining saplings into surprising shapes and structures. 

Inside the museum are photographs of one after another sculptures made with willow branches and saplings, each stretching the imagination more than the last.  Even though they are two dimensional photographs, the sculptures seem almost living.  That room in the museum left me wondering how someone could even imagine creating such unusual pieces.  The link for the artist is

The next exhibit made the one I just described seem quite ordinary.  It was called “Hybrid Visions” by Ken Butler.  An article online from the university described what he does in this way:  “He is internationally recognized as an innovator of experimental musical instruments created from diverse materials including tools, sports equipment and household objects.”

This exhibit has to be seen to be believed.  Ken Butler takes everything from the backs of old wooden chairs to a laptop computer and creates musical instruments that, apparently, can be played.   This is impossible to describe because no one who has not seen it would have existing in their minds reference points to which to relate the descriptors. 

While this has nothing to do with Caregiving other than our getting out of the house, doing something stimulating to keep this Caregiver from going crazy, there is an odd sort of metaphorical implication for framing our existence in terms of the exhibit.  If it is possible to piece together found items that appear to have been gathered from dumpsters and front parkings on garbage day, add some guitar/violin/cello strings and make music, maybe we can piece together a life of good quality and make our own sort of music. 

I think that interpretation is a little contrived and heavy-handed for something so whimsical as “Hybrid Visions.”  Oh well, remember, I spent forty years looking for sermon material wherever I could find it, so that the message of the Scripture readings could become more accessible in contemporary terms.  It is an occupational hazard.

Mary Ann has gone to bed and seems to be settled for the moment.  We will again hope for a quiet night.

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

Who knew there was a word for it?  The online caregiving spouses of those with Lewy Body Dementia (or some form of it) recently contained a line of posts titled Anosognosia.  Wikipedia defines it this way: Anosognosia is a condition in which a person who suffers disability seems unaware of or denies the existence of his or her disability.

Actually, those who have been reading this blog for very long, have heard me describe a variety of behaviors that could be described with the word Anosgnosia. 

When anyone asks Mary Ann about cooking, her response is always: “They won’t let me in the kitchen any more.”  What she seems to be saying is that she could cook and chop and handle hot pans and sharp knives and prepare meals, if only we (I) would let her. 

Mary Ann will often start to undress while standing up, even though for a number of years now, her balance and coordination have not allowed her to do so without falling. 

She has headed into the bedroom to get sewing paraphernalia to do repair work, most often on something that ends up being a hallucination. 

While I sometimes do it, I dislike reminding her that what she is attempting  is something she can no longer do on account of the Parkinson’s.  I think the better choice when confronting some attempt at doing something no longer within her capability, is to redirect her attention to something else. 

As troublesome as are the times she acts as if she has no limitations on account of the Parkinson’s, I can’t help wondering if they are not part of the reason she is doing so well.  As much as she has been through, it is hard to understand how she is able to do maintain such a high level of functionality in so many areas. 

Today went pretty well.  She slept in late, essentially tacking her morning nap on to the end of her night’s sleep.  She had a good breakfast, a fairly substantial lunch.  We went out for a ride to Ensley Gardens (I walked through them while she chose to stay in the car) and a treat at the Baskin and Robbin’s on the other side of town. 

Mary came over, brought the promised pork, dressing and gravy, and spent about an hour talking with Mary Ann while I worked at the computer.   Since I tend to be quick to respond in conversation, my presence makes it hard for Mary Ann to be engaged in conversation.  My leaving the room for a time allows her to interact more freely with friends. 

Again, she has gone to bed early, without supper.  I guess by now I should know that a mid to late afternoon ice cream treat is going to interfere with her eating supper.  I suspect she will be up to have snacks during the night.  I will, of course, need to assist in that activity. 

The last couple of afternoons (before today), I have left the house for a time while a friend spent time with Mary Ann.  I have spent the time in a different way from usual.  Rather than sitting in the car in some natural setting to read or listen to music, or going for a walk, I have visited a number of small art galleries here.  I am pretty much devoid of any knowledge in the area of the visual arts, but I am intrigued by them. 

At most of the stops at galleries, there has been a docent or artist or owner there who was willing to spend some time in conversation.  I have learned a bit about the art scene here, and how some of the artists have approached their subjects, what processes they have used.  It has been very interesting, opening a new window on reality for these well-worn eyes. 

The conversations have nourished a discovery I made decades ago.  There is more than what first meets the eye in most of what we see.  Whether it is a landscape, a city street, buildings, trash, telephone poles, growing plants in any stage, people, there are many ways to see them.  What artists often do is provide new ways to see the ordinary.  While I have no natural ability or inclinations in producing visual art pieces, my interest has been piqued. 

One of the artists described her fascination with shadows on the water in a pond or stream or lake.  The shaded area of the water’s surface reveals what lies beneath the surface.  Lighted areas show a reflection of what is above.  It is a phenomenon I have noticed when out walking with my binoculars around my neck.  Often I will look for those shaded areas to see if I can locate fish or turtles or frogs. 

In a couple of the visits yesterday and the day before, the descriptions of a particular art piece triggered the impulse to write and preach a sermon using the piece as a visual aid.  I had enough sense to spare the poor person describing the work from my launching into three part homily on the implications of that piece for their spiritual growth. 

One of the artists described her fascination with shadows on the water in a pond or stream or lake.  The shaded area of the water’s surface reveals what lies beneath the surface.  Lighted areas show a reflection of what is above.  It is a phenomenon I have noticed when out walking with my binoculars around my neck.  Often I will look for those shaded areas to see if I can spot fish or turtles or frogs.   That thought caused my sermon muscles to twitch for a moment. 

Maybe I can convince Mary Ann to consent to a trip into KC to the Nelson again.  There are rooms filled with art pieces, some incomprehensible, some boring (in the eyes of the beholder — me), some exciting, some very thought provoking.  They also serve a great lunch in the Roselle Court.  We will see.

After such a tough time post hospital stay, this one has been a pretty good week. 

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

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