November 9, 2009

Hospital Stay and Days Following: Reflection

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Mary Ann slept reasonably well last night — back to a more normal pattern of getting up to use the commode.  She was up before 6am for some food, but was willing to lie back down for a while.  She got up at 7am for food and pills.  She did pretty well, handling most of the consumption on her own — just a little help with some of the yogurt.  She continues to be able to hold her head up, at least for a while.  She is communicating a little better.

She was up for about two hours and is now back in bed.  Yesterday late afternoon she was up for about two and a half hours.  I am assuming that as time goes by she will be able to stay up during most of a full day, but there are no guarantees that will be so. I am certainly feeling better about how she is functioning now than I was two days ago.  There is a way to go yet to regain the pre-hospital norm, if that is to be the case.

One of Mary Ann’s friends from Junior High days is celebrating her 50th wedding anniversary today.  This was the 50th anniversary year of Mary Ann’s graduation from East Aurora High School  East High is, of course, an arch rival to West Aurora High from which I graduated a couple of years later.  We have been married almost 44 years — and they said it couldn’t work, a girl from East High and a boy from West High.

Cherri is thrilled with the celebration.  In these times, it is a remarkable thing to have longevity in a marriage. They have children and grandchildren that bring them great joy.  Cherri shared words of love and concern for Mary Ann, recognizing the contrast between her mobility and the options that mobility provides and Mary Ann’s plight.  She and Joy and Terry, along with Mary Ann made up a foursome to be reckoned with.  When they are together it is as if not a day has passed since they hung out together so many years ago.  They all care very much for Mary Ann and hate seeing that feisty lady they have known, trapped in a body that won’t cooperate and diminishing in mental acuity.  She has had such a wonderfully wicked sense of humor that could get you when you least expected it.

Along with the sadness at what has been lost, is something that is not so obvious, something that is important.  It is something that has not been lost, but found.  It is something that is there, available to all of us if only we will pay attention.  It is something that our situation makes more visible.  It sounds very trite to say it this way, but it is not at all trite.

Mary Ann and I live at the very core of life all day long every day.  There is deep and profound meaning in the simplest of tasks.  There is not a trivial moment in our days.  While there are great limitations on the options available to us for activities, there is no limit to the value of our time.  Our lives are filled with meaning.  Whether there is sleeping going on or time on the commode or eating or going in the car or sitting on the deck or watching the computer screen saver move through pictures of our Grandchildren, there is value attached to each moment.

Anyone who has lived long enough to have gone through painful times is likely to be aware of the meaning attached to the time we have.  Every moment we are in, contains all the time there is.  It is a moment of life, which my spirituality understands to be a moment intentionally given by the Someone who gives us life.

While the heart of Christianity often gets clouded by caricatures shaped by the loudest voices who seek to define what Christianity is, the truth is, it is a relationship created and sustained by a kind of love that is ultimately beyond human comprehension.  It is not a set of behaviors or a political position but a connection with One who produces good behavior to the degree we don’t ignore that connection.  The core is the relationship, not the behavior.

Back to Mary Ann’s day.  Edie spent the morning with her.  Apparently, Mary Ann got up and spent the morning engaging in conversation as well as watching and talking about the preparation of the meal.  We enjoyed a hearty meal, watched football for a while (of course, the Chiefs lost again), and then Mary Ann decided to lie down again.

Tonight is the time we usually attend a worship service.  At the moment, I am not very confident that will happen.  She has not yet dressed today.  I would be surprised if she would tolerate preparations to be out with people.  We will see.  It is still a couple of hours to Service time.  She is sleeping soundly at the moment.

As expected, she was not ready to try heading out in the car and attending the Service.  She was up for a while, ate a little, watched a little television and headed back to bed.

Tomorrow begins with the bath aide and includes an afternoon trip to the dentist.  It will be interesting to see if she has the stamina to do both.

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

 

November 6, 2009

Third Day Home from Hospital

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“Are you going to pack up so that we can go?”  She thought we were still in the hospital.  After all the naps yesterday, the first part of the night was pretty tough.  She was up every few minutes sitting up, messing with the sheet.  She said she was making the bed.  It must have happened a dozen times with only minutes between each one.

When she thought she was in the hospital, I pointed to her quilt hanging behind the bed as I did once before.  This time she just said, “She keeps insisting,” which I understood to mean her “other self.”  She has not used that language before, but that sort of delusion is among the problems I hear about in the online Lewy Body Dementia Spouse Caregiver group.  That may not be what she meant, but it certainly sounded that way.

She settled down by about 1:00am.  Gratefully, she stayed asleep other than for a couple of trips to the bathroom for a number of hours.  This morning before 5am, she got up in need of something to eat.  I got her up and to the table for some juice and crackers.

Again this morning, she could not manage to negotiate eating the cracker without my feeding it to her.  She couldn’t manage the juice by herself either. She couldn’t seem to locate her mouth with the straw.  That has happened on occasion in the last weeks, even before the hospital stay.

Gratefully, after having the juice and crackers, she went back to bed and to sleep, and has been sleeping ever since– it is about 9:45am now.  She is moving around quite a bit in bed, but that sort of movement has been so from some years before the Parkinson’s was first diagnosed (22 years ago).  Vivid dreams with physical movements associated is one of the signs of future problems with this sort of dementia.  Of course, it is not a direct correlation, lest those of you who experience that think you are doomed to dementia.  It is somewhat predictive, but lots of other things come into play for problems with dementia to arise later in life — both genetic and environmental.  At least that is my understanding from what I have heard and read.  I am not an expert!!  Please don’t attach that burden to any observations I make.

I just glanced at the monitor again to see how Mary Ann is doing.  I did that automatic check that is natural to those of us who are Caregivers.  She was fairly still.  I waited and watched to see her body movement to verify that she is breathing.  Her current circumstances do not seem precipitous, so there is no special need to check.  It is just a normal response to her general condition.

Parenthetically, I didn’t trip the live trap soon enough this morning.  There is now another squirrel with a frightening tale to tell.

She has been sleeping now for many hours.  It is almost noon.   I am wondering who she will be when she awakens — the confused Mary Ann, or the one who is still mostly functional.  I am going to let her sleep as long as she can in hopes that she will “sleep it off” and return to the  version of normal we had before the hospital stay.

It is almost 4:30pm.  Mary Ann stirred for the first time today at about 4pm.  She got up to go to the bathroom.  We changed the disposable underwear, and I thought she would then get dressed.  Instead, she wanted to put her pajama bottoms back on and go back to bed.  That is where she is now. 

Once before she slept for almost two days after having had multiple sleepless nights which had resulted in much increased hallucinating.  She was significantly improved after that two day sleep.  I am, of course, hoping, planning, expecting that to be the case this time.  I am not so foolish as to count on it as a certainty.  She may be anywhere from completely lucid to virtually unable to function. 

As always, we will deal with what comes when it comes.  While I have in my heart of hearts ruled out residential care, this experience is causing me to reconsider at least thinking about the possibility.  I am still not actually considering it, but I am allowing a mental review of my position on the matter.   At the moment, all the options I am actually considering involve remaining here at home, adding whatever help or equipment is needed.

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

 

November 5, 2009

Second Day After Hospital

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There is smoke coming out of the china cabinet!  You had better wash that bedspread, there is dirt all over it.   Is that cat real?  The cat question was a bit encouraging since she did not simply assume that it was real.

She accepted my offer to feed her when she just couldn’t seem to negotiate her bowl of “Little Bites” shredded wheat.  She had managed most of the yogurt on her own.  She again had trouble getting the straw to work as I tried to get her to finish the Miralax in water.  That is one of the most important items in her medication regimen.  At first she wanted to drink without the straw, but there was no way to get her head erect enough for the water to make it in her mouth.  In the hospital, when she was most disconnected at night, she couldn’t manage to suck on the straw, but blew through it instead.

There have been some moments of lucid interactions.  As she was lying down for a nap (about an hour after getting up), she mentioned lisiening to the “radio” meaning the book on CD that we were listening to on the trip.

By the way, she did sleep better after the applesauce last night.  It is a good thing.  I was running out of patience with the constant needs every few minutes.  There were more times up throughout the night, but there was enough time between them to get some sleep. She did get up pretty early this morning.

I am starting this post early in the day in hopes that I can get to bed earlier tonight.  Of course, my hope is that Mary Ann will be able to get to sleep at a reasonable hour and stay asleep other than a few trips to the commode during the night tonight.

It is now mid-afternoon.  It continues to be a very difficult day.  After her nap, during which I wrote the paragraphs above, we attempted lunch.  There was a piece of Glory Days’ Pizza left from yesterday.  That is her favorite.  I cut it up for her, and she managed a few bites of it with her fork.  Normally, she has no trouble eating small pieces of pizza with a fork.  Finally, I needed to help her. As she had yesterday, she tried to take a drink of Pepsi and set the cup down on top of the pizza on her plate, seemingly unaware that she was doing so.

She ate a few bites of her favorite green Jello, Cool Whip and cottage cheese salad that Mary brought yesterday.  After a two or three spoonfuls she was done.  I offered her a chocolate chip cookie.  She could not negotiate holding it and getting it to her mouth.  I helped her eat half the cookie.

We drove over to Doug and Marikay’s so that I could get a much needed haircut.  She sat with her head down during that time.  When we drove back by the coffee shop, I offered to use a buy one get one free Dairy Queen Blizzard coupon.  She just couldn’t answer intelligibly.  I concluded that she did not want any.  She would not have been able to handle eating it at the DQ, but we could have brought them home.

Moments ago, she wanted to go to the bedroom for some reason of which I was not aware.  When we got there, she wanted to get dressed for bed and was irritated that I didn’t realize what she thought was obvious.  I explained that it was only 3:30pm, and she recognized that it would be too soon to go to bed.

She is now listening to the book on CD that we started on our trip to Hot Springs.  What a dramatically different place we are now, less than a week from the time we were enjoying there.  I just asked if she had any pain or anything was hurting.  She said clearly that she was not hurting in any way.  Her head remains hanging, but she seems to be awake.  I don’t know if she is able to follow the book, but at least at the moment she is remaining in the chair.

I continue to hope that at some point she will snap out of it.  Right now, we would not be able to manage going out to eat in a restuarant, one of our main treats.  This is a whole new place in this trek, a place we would rather not be.

So far this is a pretty distressing day.  She is lying down again.  It is about 4:45pm.  I asked her earlier if it would be okay for us to go to the Parkinson’s Support Group tonight.  She connected with the question and said it would be.  Then a while later she fell while I was on two phone calls, one a survey from our Financial folks on the land line and another on the cell phone from our Son who is on vacation with his family in Colorado.  They had just seen an American Bald Eagle as they were driving along.  She decided she did not want to go to the Support Group meeting.  She said she needed to lie down.  There had apparently been lots of drainage from her mouth the last time she was napping.  I hadn’t noticed just how much it was earlier.  I changed the bed and have her bedding and pillow in the washing machine at the moment.

I am writing lots today, I suppose on account of the need just to talk about what it going on.  This is a new level of need.  At moments like this there is a sense of isolation that comes, recognizing that even with all the support we have from so many wonderful people, ultimately we are on our own as we deal with this.  No one can do it for us.  Others have lives full of needs that they must deal with.

I am, of course, confident of the Lord’s Presence.  Even the Lord experienced a sense of isolation.  It is helpful to recognize that kinship.

On a lighter note, I forgot to spring the live trap this morning after there was no raccoon to be found in it.  A squirrel managed to trip it while foraging for seed that had fallen into the trap.  Is he going to have a story to tell!  He moved like lightning when I opened the door to the trap.

There may be more to tell as the evening wears on, but I will post this now and write more later or tomorrow.

Addendum: Mary Ann got up from her third nap today just long enough to change into her pajamas.  The sheets needed to be changed again on account of the drainage from her mouth.  The washer and dryer are getting a workout.  Logic says that tonight will be a restless night since there were three naps today.  I guess my hope is that she is sleeping off the confusion and will soon return to normal. 

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

 

November 5, 2009

Day After Hospital Stay

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This has been something of an odd day.  Mary Ann woke up seeming fairly alert. Very soon, she shifted to a minimally responsive mode.  For much of the day, her head hung down on her chest.  She seemed ready to roll forward out of the transfer chair.  The bath aid when she was here, Volunteer Margaret (our Parish Nurse) when she was there or I needed to hold her shoulders up to keep her from going over.

She had a routine Mammogram this afternoon.  It was quite a struggle for two techs to get her positioned and hold her up for the x-rays.

She did a little better after a mid-afternoon nap, but resumed the head down position again after a bit.  Supper was a challenge for her, but she did get a fair amount eaten.

The hallucinations have continued.  I have been back and forth a number of times as I have been trying to write this post.  For the most part, she is saying things that don’t really make any sense.  She starts to say something and then stops, apparently losing track of it or recognizing that it makes no sense.  This has been one of the more challenging times in our journey.

I recognize the head on the chest problem from many of the posts of those in the caregiving spouses of those who have Lewy Body Dementia online support group.  Again, I am hoping that this is just a temporary dip into the Parkinson’s Disease Dementia.  Since we live so close to the boundary between lucidity and confusion, there is always a fear that we will move over that line permanently.  This particular type of dementia, is very unpredictable.  People can move in and out of lucidity and functionality seemingly at random.

There have been only minutes between needs for the last hour or so.  The last trip was for another visit to the commode, just five minutes after the previous trip to the commode.  As we were taking care of that, she asked if we were going home.  I said that we were home and pointed out her quilt hanging on the wall in the bedroom.  That seemed to satisfy her for the moment that she was in her own bed.

It is these times of utter confusion that are among the very hardest for me to handle.  The constant needs that cannot be satisfied since either the words make no sense or what she sees has no substance are very wearing.  Right now it appears that this will be another sleepless night filled with constant frustration.  Then again, maybe not.  The signs are not good at the moment.

Another trip to help her sit up — lots of words that made no sense.  She did agree that she wanted to go back to bed.  We will see how many minutes pass until her next need to get up for something indiscernible.

Five more minutes, another trip to the commode.  This time she wanted something to eat.  She decided to go to the table for a snack container of applesauce.  She took my arm to walk (our usual pattern), then she wanted to continue with the walker (very difficult for her to handle), then she recognized that she needed the wheels (transfer chair), and finally we made it to the table.  All those changes happened in the span of about twenty feet from where we started at the bed to the table.

She usually feeds herself when she has the applesauce, but that wasn’t working for her tonight.  I offered and she chose to have me feed her.  After some difficulty with her trying to get something off the bed, something that was not there (didn’t I see that pile of whatever it was), she is now back in bed for how long — I don’t know.  It is about 11:30pm.  She said that Zandra would soon be here.  Zandra is the bath aide who comes in the morning two days a week.  Zandra was here this morning.

She seems to be stirring again.  Let’s see what it is this time.

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

 

November 4, 2009

Home From The Hospital.

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Finally!  We came home around 3:30pm today.  While the staff at the hospital was wonderful, and Mary Ann had excellent care, the dementia has increased dramatically.  Physically, she is fine.  We are back to normal, riding the margin between heart issues and Autonomic Nnervous System issues (fainting due to sudden drops in blood pressure).  It is not, of course, where we would choose to be if we had a choice, it is just what is so.

From the very first sleepless night, the first night we were there, the decline has been steady.  Last night was terribly difficult.  I put up the rails on the bed so that she would not get up and try to walk by herself on a very slippery, very hard floor.  She just could not accept that the catheter allowed her to stay in bed rather than head to the bathroom.  She saw people and animals and messes here and there.  Today she described in detail a busy cluster of bees on the floor at some time during the night.

I sat beside her on her bed for fifteen minutes to a half hour a number of times during the night.  At one point when she was awake, in the middle of the night, I checked my watch to see how much time there was between the need for me to get up and respond to her or help her.  The time was usually between ninety seconds and two minutes.

I realized that if we were required to stay another night, I would need to arrange for a paid companion so that I could get some sleep.  The constant nighttime needs are more than I can handle and remain rational, patient and helpful, after just two or three nights like last night.

Talking with the doctors helped clarify just how important it was to get back home to a stable routine and familiar setting.  They agreed that the additional tests being considered would not serve any real purpose.

While there were differing opinions by the two doctors and the Physician’s Assistant, two out of three felt that there was no compelling reason to expect more vulnerability to Congestive Heart Failure than there has been since the first bout five years ago.  We are going to return to our pattern of life to the degree the dementia will allow.

Mary Ann decided to go to bed at 5:30pm this evening. She has been up and down a a few times already.  Of course, I won’t know how tonight will go until morning.

I had mentioned in passing to one of the nurses that I appreciated having all the folks at the hospital with the care recognizing that Mary Ann and I would pretty much be on our own to deal with the aftermath when we got home.  I suspect she mentioned it to the Social Worker at the hospital who came in to talk with me before we left.  It is the norm that a Hospital Social Worker will check to see what if any needs there might be when a patient goes home.  This time the questions indicated some extra effort at listening to our situation.

The Social Worker mentioned that the nurses had spoken well of the care being provided Mary Ann.  Since I am no longer in a role that provides opportunity for external validation it was especially meaningful to hear those words of affirmation.  The Social Worker seemed to feel very good about the support system we have, from family and the congregation.  She sees folks who have little or no support as they try to care for a Loved One.

The day tomorrow is a full Wednesday.  It will be interesting to see how Mary Ann does with all that will go on.  I am going to continue our activities based on the assumption that alertness and the ability to track will return and the hallucinations will diminish. It that improvement does not come, we will adapt.  It is what we do.

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

 

 

 

October 24, 2009

Stuck at Home Today

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The toast was just out of the toaster with a little Mayo on it.  The Provolone and smoked turkey had come from the fridge.  The bacon was warm from having just been cooked to just the right crispness in the microwave.  The sandwich was still sitting in front of her, untouched, after I had made some more bacon and toasted a slice of bread, topped it with butter, peanut butter and jelly for my own supper.

I asked what was wrong — why she had not touched the sandwich sitting in front of her.  She said it was frozen.  There was another time not too long ago when she said the same thing about a sandwich I had made for her.  Of course I did the opposite of what should be done when hallucinations mix into reality.  I complained in frustration as I took it to the microwave to heat it up for her.  I complained that I have no power to fix what isn’t there — it was impossible for it to be frozen.  When I asked what led her to believe it was frozen, she said there was ice on it — again, impossible.

While I should be past letting these things cause frustration, it is true that it is impossible to fix what doesn’t exist.  It is already using up all my coping skills dealing with what is real.  Dealing with the challenges all day and all night (sometimes) creates a very thin veneer of equilibrium.  My frustration came and went in moments, and Mary Ann ate about a quarter of the sandwich — followed by a cookie (no wonder she stays so thin even with trips out for ice cream).

Today also included lots of trips caused by some intestinal activity — not always making it in time.  Gratefully, the disposable underwear makes that occasional incontinence easier to handle.  This was a day the role of waste management was exercised.

One of the complications was that the esophageal spasms flaired up today.  When they come, there is much discomfort that lasts for hours.  This attack lasted most of the day.  I have been to the Gastroenterologist and been tested in every way known to humankind.  There is pretty much no real explanation and no treatment.

One of the routine challenges of any Caregiver is the need to continue to deal with the needs of another, no matter how small those needs may be, even when the Caregiver is sick and in pain.  It just comes with the territory.

Since last night was not a particularly good one in terms of uninterrupted sleep, we were both tired.  As a result, Mary Ann napped for a long time, and I vegetated, trying to ride out the spasms.

Mary Ann is in bed now and seems to be sleeping.  I will, hopefully, not be far behind.  I am sure she will need one or two snacks during the night since there was little consumption of food today.

Two updates:  No raccoon visitation last night either.  We will see what tonight brings. The other update is that I have managed to avoid any exercise walking the last two days.  Tomorrow is another 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.

 

September 21, 2009

We Have Food!!!

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Maybe that is a little dramatic — three exclamation points — but we do now have a number of new items of food in the freezer.  While our Daughter, Lisa, stayed with Mary Ann for the three days I retreated to Oklahoma, she made lots of things that are within my cooking comfort zone and put them in the freezer.  She wrote the preparation directions on pieces of paper and put them with each item.  Gratefully, they are mostly the kind of directions that say, thaw, cook in oven for an hour at 350 degrees.  I can handle that!

Pete and Carla stopped by with a meal this noon.  They are very thoughtful folks.  I was sorry to miss seeing them since I was at the lake while Volunteer Jan spent time with Mary Ann. Jan and Mary Ann seem to enjoy each other’s company.  This afternoon Elaine came by, picked up Mary Ann and took her to the Quilt Show.  Mary Ann loved making quilts for a number of years.  She especially liked piecing the tops together.  She spent two years hand stitching the quilting on her first quilt, a queen sized sampler quilt.  After that, she took them to be machine quilted once she got the tops pieced. It has been hard for Mary Ann to accept the loss of the ability to make quilts.  After such a busy day, Mary Ann crashed late this afternoon, so the evening service at church was not an option for us.

This morning’s time at the lake provided a couple of interesting treats in observing wildlife.  The first is a repeat of an encounter I had a few weeks ago.  Again today there were two Ospreys sailing overhead.  One came right over the car, so I got a very good look at him through the binoculars.

I made my usual visit to the Delaware Marsh, which now has very little visible water in it.  The area that I walk has one large puddle left.  As I approached it from a distance, walking a on tall ridge alongside the marsh, the water in the puddle seemed to be almost boiling with activity.  When I focused the binoculars on the mud sided puddle, it was boiling, not from heat but from the movement of snakes, maybe a dozen of them. They were twisting and turning rapidly, in constant motion.

After watching a while, it became apparent what was going on.  The water had dried up in most of the area, leaving that large puddle as the last, very confined, place where the frogs and fish were trapped.  While I am not absolutely sure about the fish, I could see the frogs jumping out of the water, flying into the air, with snakes in speedy pursuit.

Some of the snakes were pretty large, at least two or three feet long — some probably longer.  The snakes began slithering off in the mud and marsh grass as I approached.  One large snake and one medium sized snake remained in the mud at the edge of the water even though I was not far away.  As far as I can tell, looking online, they were white bellied or yellow bellied water snakes.  They did not have the telltale triangular head of a venomous snake.  While I am not particularly fearful of snakes, I kept my distance.  The binoculars provided as good a look as I would get even if I tried moving closer.  I am sure they would have moved away quickly if I had climbed down the ridge into the marsh.  My visit to that puddle probably provided a stay of execution for some frogs and fish.  I doubt that the stay will be for long.

Uh-oh.  There seem to be signs of restlessness being revealed by the video monitor.  I hope Mary Ann sleeps well tonight since tomorrow includes two different Sonograms, heart and carotid artery.  We always hope for no change in the condition of both.  Blocked heart arteries, some weakened heart muscle and a dented and rough surface on a large lesion on one side of her carotid artery keep us aware of the harsh realities of her condition.

Each day is a gift!

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

 

September 11, 2009

Too Much Sleep, or Just Right?

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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Sleep that knits up the ravelled sleave of care
The death of each day’s life, sore labour’s bath
Balm of hurt minds, great nature’s second course,
Chief nourisher in life’s feast.
~William Shakespeare, Macbeth

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

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

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

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

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

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

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


 

September 10, 2009

Caregiver’s Friend: Spray and Wash.

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , , , |
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We splurged and ate at Texas Roadhouse.  It is not exactly a gourmet restaurant, but the beef is tasty and prepared well.  Most of all, those sweet potatoes are spectacular.  They have managed to make a veritable health food into a diabetic’s nightmare.  Gratefully, neither Mary Ann nor I have added diabetes to our collection of ailments.  Frankly, given the amount and regularity of our ice cream consumption, I  have no idea why we haven’t both joined the ranks of those with type II Diabetes.

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

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

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

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

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

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

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

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

 

August 29, 2009

Leaning to the Left

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , |
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“Will you push me up?”  Mary Ann asks often, especially when we are out in the car.  When she asks, sometimes her head is almost completely horizontal over the console between the seats.  I usually push her up before it goes that far, even if she hasn’t asked.  I have to be careful since sometimes she is napping in that position and doesn’t want to be moved.

It happens sometimes when sitting in her chair in the living room. Especially when she has not had enough sleep, or when she shifts into the non-responsive mode, she will lean forward or in whatever direction there is something on which she can rest her arm and head.  When she starts napping in her chair, I offer to take her into the bedroom so that she can lie down.  It is not unusual for her to prefer staying in the living room if she wants to avoid taking a long nap.

When she is awake and leaning, it is always to the left.  There seems to be a natural affinity for moving to the left.  When Mary Ann is sitting at the table eating, almost without fail after a while she will be sitting with her knees and feet off the left side of the chair, eating over her lap and the floor, rather than the table where her plate is located.

It is hard for me to see that and not move her back to facing the table.  My response is not just some compulsive need for her to be sitting a certain way.  My need to move her back to facing the table comes because when she is facing to the left, the food that falls out of her hand ends up on her lap and the floor.  I then have the task of cleaning it up, hopefully before anything gets stepped on.

Mary Ann’s turning to the left at the table has been a bone of contention between us.  Sometimes she gets angry with me when I move her back to eating over her plate.  I complain about her eating over the floor making it more difficult for me because of the clean up.  I am not the noble self-less uncomplaining caregiver.

What has helped me in accepting the leaning to the left and at least trying to be less grumpy about it is the discovery that very many of the others who are Caregiving Spouses of those who have some sort of Dementia with Lewy Bodies describe the same behavior.  When someone in the online group mentioned that her Loved One couldn’t hold his head up, many responded with the same problem and still others described the leaning phenomenon.  Many of those who have been dealing with Lewy Body Dementia struggle with the same issue of trying to deal with the effect of the Disease on their Loved One’s ability to maintain a sitting up position or keep his/her head erect.

One online member suggested using a chair with arms at the table.  That suggestion is a good one.  The disadvantage is that our space is so confined that getting her in and out of an arm chair at the table is difficult.  It may, however be the lesser problem.

As I have mentioned many times before in these posts, it seems to help when a frustrating behavior can be explained by the disease we are battling.  It moves the behavior from what seems willful to something that is completely involuntary.  It moves the problem to simply another area needing a creative solution.  By the way, when I make observations on behaviors of Mary Ann that are frustrating to me, I become very grateful that Mary Ann is not writing blog posts on the things that I do that irritate her.  You think my posts are sometimes long!!  She could write volumes.

Tomorrow will be an early day since we are going to try to attend the Annual Parkinson’s Symposium sponsored by the University of Kansas Medical Center in Kansas City.  We will see how the night goes and whether or not we can manage a very early starting time.  We have to allow for an hour and a half travel time.  My hope is that we can at least make it for part of it, and that the information will be helpful.

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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