November 11, 2009

Wake up! Go to Sleep! Please!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

November 10, 2009

Is This The New Normal?

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , |
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I explained that she wouldn’t be able to get the pills taken if she did not open her eyes.  “Will you open them now so you can take your pills?”  I said.  She replied, “I will when I am damn good and ready!”  Now that is the Mary Ann that Joy, Terry and Cherri remember.  I just laughed and told her that I liked her better when she was sleeping.  She laughed too.

We both had trouble getting to sleep last night.  I suspect a change in the weather and the barometer might have played into it.  I think it was some time after 1am that we finally went to sleep.  Mary Ann woke up very early.  There were trips to the commode, a snack, a period of time she sat in the living room in front of the television while I slept.

While it was not so apparent in the early times she was up, when she got up around 8am, things did not go so well.  I had asked her to stay lying down while I showered so that I would not have to come running at the sound of the thump, evidencing a fall.  When I got out, as usual, she had not stayed put and was in the living room in her transfer chair.

She seemed pretty confused.  Her eyes were tightly shut.  She was talking as if to people.  Earlier she had seen Granddaughter Ashlyn.  This time she was asking Granddaughter Abigail to show her what she was drawing.  They, of course, live ten hours away in Kentucky.  She said a number of things to me that I just couldn’t connect with.  She got irritated with me for not understanding what she was talking about.

I got her to the table for pills and yogurt.  Her eyes remained closed.  I put the pills and water and yogurt in front of her.  She had begun putting her fingers together as if grasping something and putting them to her mouth as if eating.  During our interaction about taking her pills, she seemed to be convinced that she was already taking them, even though there was nothing in her fingers.  I offered to help her take them, and she refused, again, seeming to be convinced that she was taking them.  After the interaction with which I started this post and the laughter that came with it, she was willing to allow me to put the pills in her mouth, a few at a time, give her water and feed her the yogurt.

She kept her eyes closed and would on occasion talk about things she thought she saw, seemingly unaware that her eyes were still closed.  Zandra, her bath aide, came to give her a much needed shower and wash her hair.  I usually wash it at least once between Zandra’s Wednesday and Monday visits.  Mary Ann had been in bed almost the entire time.  When she was up for the couple of hours three or four times in the last three days, I offered many times, but she declined having her hair washed.

Zandra reported a comment Mary Ann made as Zandra was getting her cleaned and dressed.  Mary Ann mentioned how tired she was and how much she was sleeping, and then she told Zandra it was the dementia.  That comment surprised me since I just did not expect that level of self-awareness.  I talk about our situation in front of Mary Ann, using language that matches what I understand to be so.  Trying to spare her by only talking about the facts in whispers away from her hearing seems to me to risk reinforcing mistrust and encouraging paranoia, which is one of the expected symptoms of this strain of dementia (Parkinson’s Disease Dementia, a Dementia with Lewy Bodies – different from Alzheimer’s Dementia).

Mary Ann has identified the probable cause of the daytime sleeping.  That is one of the symptoms of Lewy Body Dementia.  As the disease progresses, often the daytime sleeping increases.  I seem to recall William posting online that Cindy (he calls her Sweet Cindy) is sleeping about 21 of the 24 hours each day.

Mary Ann laid down for a nap right away after Zandra got her cleaned up and dressed.  After a while, one of her pill timers went off.  I always give her the one of two pills while she is lying down, lifting her head, and putting the straw to her mouth.  In the past it has always worked to do the pills that way.  This time, while she was alert enough to indicate that they were still in her mouth, she was not able to suck on the straw.  I had to sit her up completely and put the cup to her mouth to get the water in so that the pills would go down.  Struggling with pills, both this morning and during nap time, is a distressing development, hopefully, a temporary one.

Needless to say, I called and canceled the appointment with the Dentist.  She slept soundly through that entire time.  Trying to force her to get up when she is sleeping as she is now, is not much of an option.  She pretty much can’t be aroused, or if she is, she can’t track mentally, her head hangs down and she can’t get her balance or her feet to move.

I am not ready to accept that our new normal will include constant hallucinations and sleeping entire days at a time, but I do recognize that we will probably need to accept a new normal of some sort, one at a significantly lower level of functioning than about ten days ago.  It is what it is.  We will adapt and find ways to live meaningfully with what we have.

Accepting a new normal does not mean there is no longer any option for improvement.  While the long term trajectory of this disease is not good at all, the short term is very unpredictable.  Dramatic changes for the better can happen just as quickly as changes for the worse.

It is a little after 2:30pm and she is still sleeping.  She was able to take the last round of meds in our usual pattern, while lying down, with me holding up her head.  She managed to use the straw.

As I sat on the deck yesterday, I concluded that I would rather be sitting there with her lying in bed, than be sitting there without her lying there in bed.  If this continues, I don’t know how I will feel a week or a month or a year or an hour from now, but at the moment, there is nothing I want to be doing so much that I would prefer it to having her here with me to care for.  Those of you who have lost a spouse know the profound loneliness that comes.  With Mary Ann, even sleeping, here in the house, there is some loneliness, but not of the deep and painful sort.

I gave Mary Ann her last pill at about 5pm, and she finally got up.  I consider myself a reasonably intelligent person, but I managed to completely blank on an obvious reality.  She needed to have been awakened and taken to the bathroom.  Her pad was full to overflowing.  Zandra had put a daytime pad on, not realizing that she would end up in bed for most of the day.  Needless to say, the sheet and her jeans needed to be washed.  Since I put Chux (a plastic pad with absorbant paper on top) under the bottom sheet to protect the mattress pad, the clean up was not too bad.  At this point, I think we can put away the daytime pads unless things change for the better.

She is not eating much no matter what I offer, up to and including ice cream.  Her ability to walk has diminished dramatically.  She went to bed at about 8pm and has been restless off and on for a while.  It is now about 10:30pm, and for the moment she seems settled.  We will see how the night goes.

Addendum:  She just stirred and decided she wanted to get dressed.  She didn’t want to spend the day in her pajamas.  I explained that it is after 10:30pm, and it would be hard for me if she was up for the night and slept during the day. When I asked what she would do if she got up and dressed, she said she would read.  Finally, she decided she could watch television in the bedroom without getting dressed.  I assured her I would be heading to bed soon.  This may be a long 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.

 

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.

 

October 26, 2009

First Travel Day Went Well

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I am at a computer in the business center at a LaQuinta motel in Shawnee, Oklahoma.  We put on CD’s of short stories.  They were a little strange, but kept our attention as we traveled.  It is a clear shot to Oklahoma City on an excellent Interstate with minimal traffic.  The Flint Hills remain a spectacular sight.  

The rest area at which we stopped had family bathrooms available.  What a Godsend!  My stress level plummets to nothing when I see that we have a family bathroom available rather than trying to find someone to guard the door to a busy women’s restroom while I help Mary Ann. 

It was wonderful to surprise good friend John by appearing at this door for the birthday open house on the occasion of his sixtieth.  I had sent the return comment card ahead in the mail since I wasn’t sure that this would all work out, and I wanted to mislead them into assuming that we would not be there for the open house.  Packing the car the night before actually worked.  We got off at a reasonable hour and made to his home within minutes of the start time of the open house. 

By the way, we were able to include a stop at the Braum’s Dairy Store in Blackwell, OK.   Mary Ann got two scoops of Butter Pecan — there is none better.   I had a two scoop Hot Fudge Sundae covered with salted pecans!  Just to make clear that we know the ice cream decorum — it was after twelve noon (by minutes).   All is well with the world!

It was a treat to see Peggy and reconnect after thirteen years.   I had the joy of being one of three pastors who officiated in their wedding.  After having such a clergy presence, they are assured of being stuck with one another for many years to come.  Somehow, I think they are okay with that!

A special treat was getting to see and talk with John’s Daughter, Hope.  Since I lived in their home for the first few months of my ministry in Bethany, Oklahoma (an inner suburb of OKC), I got to know Hope and Joel during their early years.  Hope was fiesty!  That, my friends, is an understatement.  She was always intriguing and someone to be reckoned with even as a child.  The energy and intelligence and drive were apparent from the outset.  She has turned into an engaging adult who is realizing all that potential — of which the pinnacle is about as cute and pleasant little twenty-one month old little boy as could be imagined.

There was one surprise for me.  After a time, Peggy came out with what was obviously a Christmas present, wrapped nicely, topped with a flat bow that was covered with dust, as in a well-aged bottle of vintage wine.  It turned out to be a Christmas present that they had gotten for me, wrapped and marked with my name in 1996!  By the time it was ready to be given, we had already moved away.  It just never found its way to me — until now.  It was a nicely framed wedding picture of John and Peggy, looking young and excited as they began a new life together.  The picture, of course included the three clergy who joined forces to set them on the right path.

While the folks who attended were from John and Peggy’s life after we moved away, one blast from the past was visiting with Barry, a fellow pastor — who is the consummate smart aleck.  What great fun to see him again and pick up with the bantering as if no time at all had passed.  Barry lost his wife only months ago after a long and very hard battle with diabetes.  This particular experession of the disease did its worst for almost as long as Mary Ann has been dealing with the Parkinson’s.  Pat lost her sight (for the most part) pretty early on.   Barry also has spent many years doing full time ministry and full time caregiving.  There is an instant connection among those who fully understand the dynamics of caregiving from the Caregiver’s perspective. 

After a stop at a Denny’s, eating too much food packed with unhealthy carbs, we have settled in at the motel.  Shawnee is about an hour closer to Hot Springs than John and Peggy’s home in Edmond.  We will not have to drive in any of the OKC city traffic tomorrow.  The balance of the trip should be pretty manageable — although I would not presume to predict how well tomorrow will go.  I am just grateful that we have made the first day without serious problems. 

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 25, 2009

Travel Preparations Today

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This time I have made sure that we have all the back up bottles of medicine. The last trip brought more than one medicine crisis — trips to the local 24 hour pharmacy in Louisville.  This time we are heading to Hot Springs, Arkansas.  I have just done something almost unheard of in my travel pattern.  Everything is packed and most of it is already in the car.

I am not sure I can remember when last I actually packed before the morning of the trip.  As I have mentioned in former posts, packing is no small task when packing for two, one of whom is not able to participate in the process.  Portions of the day were spent bringing Mary Ann’s clothes out of the closet for her to go through.  Last trip, she was not pleased that I had managed to forget the nylons that went with her fancy pants outfit.  By the way, on the last trip, those pants caught on her wheel chair when she was sitting down and obtained a very large vent where the seat of tht pants should be.  So much for those fancy pants.  I think we have covered the bases with clothes for warm and for cool.

The black case is a must.  That is the large catalog case with first aid supplies, straws, wipes, plastic silverware, Clorox wipes, Miralax, Tums and anything else I can think of that we might need along the way.

We have been to the library to pick out a few books on CD to choose from as we travel. One is already loaded into the CD player in the car.

There is a bag of snacks, granola bars, bananas, licorice, and breakfast fruit bars.  Sometimes when we stay in a motel, we don’t make it up in time for the breakfast hours and need items to eat so that the morning pills aren’t taken on an empty stomach.

We have lots of the disposables along.  The intestinal issue is not completely resolved.  I am expecting there to be a major production some time soon  That is as delicately put as I can manage while revealing one of the significant challenges Caregivers often face.

I took the role of the bath aide this morning so that we would start the trip at our best — squeaky clean.

We have far more along that would seem necessary for a three night stay at a Bed and Breakfast.  Since the trip is eleven hours one way, we need to break it up into two days for the trip there and two days for the return trip.  We have on occasion had to lengthen a trip for one reason or another.  The one to Tucson, Arizona a few years ago was lengthened by a few days in the hospital.  Those experiences remain in the back of our minds each time we set out on a trip.

And so we are heading off for another adventure.  We cannot know how it will go.  We know far too much about the possibilities for how it might go.  We have tried to prepare to the degree possible.  I just added the booklet we have made with all the pertinent information, doctors’ names and numbers, Durable Power of Attorney for Health Care, Medicine list, family contact information.

With all the preparations made, we actually will relax and enjoy the trip to the extent that circumstances allow.  If there are problems, we will deal with them.

We will be gone for about a week, so the posts will be few to none.  There is a computer to which we will have some access at the Bed and Breakfast.  I hope to provide an occasional update, whether anyone is interested or not!

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.

 

August 15, 2009

Caffeine: Cargiver’s Drug of Choice

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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As reported in the previous post, last night was pretty crazy until Mary Ann settled down around 12:30am.  Since that time, she has been awake only six hours of what has now been twenty-four.  She was awake for an hour early in the morning, an hour and a half late in the morning and three and a half hours in the late afternoon/early evening.  She seems to be sleeping soundly at the moment.   A portion of the time she was awake was spent in a very sleepy mode with her head down. 

My hope was that all the sleeping would give her mind a chance to rebuild those synaptic connections that had not had time to build since there had been some restless nights and a napless day yesterday.  My hope was that the rebuilding process would reduce or eliminate the hallucinations.  That hope was not realized during the few hours she was awake.  There were almost constant threads to be picked up and pulled off her hands.  She insisted that the bedspread that had in her mind been soiled by the raccoon last night be put in the washer.  Bedding needed to be washed anyway due to the very long midday nap without a bathroom break. 

It seems unlikely that she will be able to stay asleep throughout the night with all the daytime napping that happened.  We will see what tonight and tomorrow brings. 

One of the challenges for this and most other Caregivers is the challenge of dealing with being tired much of the time.  I am too proper and frugal to use illegal drugs to stay alert.  Actually, I don’t want to mess with my brain by putting foreign substances into it.   I have chosen to use something legal and familiar to stay alert — caffeine.  The delivery system that I use for getting the drug into my system is coffee.  I don’t do soft drinks.  I don’t use energy drinks spiked with large quantities of caffeine. I drink coffee, hot coffee, nothing added, no flavors, but not just any coffee.  I would not condescend to drink Starbuck’s.  I only drink coffees made with beans roasted to perfection locally. 

One of the owners of the business travels to the farms all over the world, especially Central and South America, and comes to know personally the local farmers and their families.  They are paid above fair trade standards with the agreement that the workers and the local community fund will benefit from the proceeds. 

The Baristas are well-trained, often winning at regional competitions and even participating in nationals.  The national Roasters’ Magazine designated them 2009 Roaster of the Year.  

Needless to say, I have developed an interest in the coffee that I use as the delivery system for my drug of choice, caffeine.  I have learned a little about the various ways of preparing the beans and the resulting characteristics of the coffees made from those beans.  If I sound pretentious on the subject, you have made an accurate assessment.  I know far less than most who are interested in good coffees.  I just like to talk about it, use the jargon and pretend to know stuff. 

As to what any of this has to do with Caregiving, like the raccoons of former posts, it is my entertainment.  The caffeine does help me stay alert when I am tired.  That part is a real benefit when needing to stay at the various tasks associated with filling Mary Ann’s needs and maintaining the household.  Even if drinking a good cup of gourmet coffee is mostly about the placebo effect, fooling me into thinking I am more alert, it still works!  

One of the difficulties of being so picky about the coffee is that when I am stuck at home, I am in trouble.  Yes, I can pull out the decades old Mr. Coffee and make a pot.  It is not the same as getting it from PT’s.  One reason is that they can brew the coffee at a hotter temperature (am I a coffee snob or what) than home coffee pots.  Home pots brew at about 160-165 degrees, while they brew at 190-200 degrees. 

Now for the really good news!  There is a coffee maker manufactured by hand in Holland that meets the professional brewers’ standards.  It is a Technivorm coffee maker.  Needless to say, they are not cheap.  Through a very unusual course of events, I was able to purchase one at a very steep discount. 

This all sounds pretty silly in the face of the real challenges of daily life, especially for full time Caregivers.  It is not at all silly, when completely trapped at home with no access to the stimulating liquid that provides a little pleasure. 

Now, using the new grinder (a Conical Burr Grinder, also steeply discounted) to provide exactly the right texture to the coffee grounds, I can make a pot of coffee brewed at 190 to 200 degrees, using freshly roasted beans, the best available, allowing the flavor to bloom before opening the bin to let the brewed coffee slowly fall into the thermal pitcher. 

Today, we were not able to set foot outside the house.  In spite of that, the day was bearable.  We had bought a half gallon of ice cream yesterday, so Mary Ann could have a big bowl this afternoon during one of the times she was awake.  She had leftover cheese bread from our favorite pizza place, left from yesterday’s short outing.  I had a good cup of coffee to lift my spirits.   The birds were singing and the waterfall was spashing over the rocks.  Trapped, but surviving well. 

http://www.ptscoffee.com/  Check them out.  You won’t be disappointed!

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 11, 2009

Problems in Common — It Helps to Know.

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , , , |
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It was just an off hand complaint when someone in our online group was venting. To paraphrase: She puts the toilet paper anywhere but in the toilet.

I chimed in that during the night, about one in three makes it into the commode.  Then came reply after reply.  I am not sure how many responded when that thread of emails came to an end. It was certainly a surprise to me that so many had exactly the same situation.  Some used grabbers to pick them up and get them in the right place.  Some found them in all sorts of places, often wastebaskets instead of the commode or toilet.

It was sort of comical to hear everyone pop up with their agreement that their Loved One did the same thing.  After a number of replies, one of the group brought some perspective into the stream of comments.  When we look back on this minor annoyance, it will be of little consequence.  Some in the group said they would love to be back at the stage during which their Loved Ones still had the ability to use the TP at all.

I wonder if Occupational Therapists have classes in how to improve the throwing arm of those who struggle with their aim?  I take for granted that one of my jobs is getting what has landed on the floor where it needs to be.  It is not even an issue (or is it tissue — sorry, couldn’t resist) for me.  It was just interesting to me when I noticed my own feelings after seeing all the replies from so many with exactly the same situation.

I felt comforted, sort of normal, on realizing that the Lewy Body Dementia had that same result in so many other households.  It seemed to remove any inclination to be bothered by something so common to others.  It reinforced that that particular habit is one that is a consequence of the Lewy Body Dementia.  Knowing that seems to help reduce the annoyance quotient of that particular behavior.

After last evening’s post, you can imagine how good it was to hear someone else caring for his wife say, “She doesn’t eat what I fix.”  It just makes a diffeence to hear that so many of us have the very same problems as we try to care for our Loved Ones.

None of us wants our Loved One to be debilitated by this disease.  None of us wants to have so many unpleasant tasks added to our daily activities.  As long as this is our life, somehow it helps to know that we are part of something outside of our control, something that is neither our fault nor is it the fault of our Loved Ones.  It is just a n consequence of the disease we are all dealing with.  It is normal – our version of normal, but 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.

 

July 10, 2009

It’s all about the Autonomic Nervous System

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , |
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Today was a little better, but not much.  So far, the decline is having more of a permanent than a temporary feel.  As always, tomorrow things may change.

It’s all about the Autonomic Nervous System (ANS).  I have just been looking at some online information about the ANS, the Parasympathetic Nervous System, a subset of the ANS, and Acetycholine, a basic Neurotransmitter that communicates messages to various parts of the body.

Sounds technical, but for me it has very practical implications.  The messages that are communicated from the ANS impact the movement of the iris/pupil in the eyes, the glands, sweating, the mucosa (nose running and drooling), the smooth muscles of the heart, the vascular system and its capacity to constrict and dilate blood vessels, the alimentary canal from top to bottom, food entering, begin digested and waste leaving, bladder function and urine production.

The list of actions under the control of the Autonomic Nervous System is a list of Mary Ann’s Problems.

We have gone to the Optometrist many times to try to get glasses that will fix her eyes ability to focus and make reading possible.  Her eyes and those of many with Parkinson’s will not cooperate.  Changes in glasses have no impact on the problem.  It is a combination of the ability to concentrate and the eyes inability to function normally.

There is hardly need to say again just how debilitating the daily sweats are when they come.  The fact the the ANS acetylcholine transmitter talks to the sweat glands and other glands in the body is very revealing.

Mary Ann’s nose has been running constantly for a decade.  We buy four ten packs of Kleenexes when we go to Sam’s Club.

The problems Mary Ann has with her heart may or may not have anything to do with the ANS, but certainly her life long problem with high blood pressure and now low blood pressure does.  The ability of the blood vessels to constrict when standing up is governed by the ANS as it connects with the smooth muscles around the blood vessels.  That ability is compromised by the disease and medications.

The workings of the alimentary canal are an obvious problem as Mary Ann has struggled with constipation for most of her life, now worsened by the Parkinson’s and meds as the smooth muscles around that canal slow.

The frequent urination and incontinence are on the list of bodily functions impacted by the Autonomic Nervous System.  Our lives are dominated by the actions of that canal.

I guess it doesn’t really make any difference that I can see the connection between Mary Ann’s many non-motor symptoms and the Autonomic Nervous system, but somehow it seems helpful to put some of the pieces together.  I don’t like it any better, but I understand it better.

One thing that is clearer to me is that there is not a whole lot we can do about the decline that is happening.  The Autonomic Nervous System governs involuntary actions.  We can’t decide to make it work better.  It has a mind of its own.

It is just confirmation of the obvious: we are not in control.  We can watch and react, we can whine and complain, but we can’t fix it.   We are left to live with it.  That is what we are doing.

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

 

April 23, 2009

Caregiver Vacation Realities

Posted by PeterT under Daily Challenges, Meaningful Caregiving | Tags: , , , , , , , , , , , , , , , , , , , , , |
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The following is quoted ( some paraphrasing) from some journaling I did the other night while on vacation at a Bed and Breakfast in Arkansas. We had spent a wonderful evening with some dear friends on the trip there.  It was our first night at the B&B. (Let me apologize in advance for the graphic detail – it seemed the only way to explain the challenges of caregiving.) It is a follow-up on my last post on travel preparations:

Ask me now if I would sound so bold and courageous about traveling! It is 3:35am. Mary Ann has had a usual middle of the night need to go to the bathroom. I got her into the transfer chair by the bed and rolled her as far into the bathroom as I could and transfered her to the toilet stool. Pants needed to be changed. That task involved the use of one of those flimsy plastic bags that refuses to open or stay opened to put the completely soaked pad (generic Depends) in. While sitting on the stool, she fainted (low blood pressure due to the Parkinson’s and medication side effects). She was out for two or three minutes while I held her on the stool – no easy task since at that point she is dead weight.

She came around enough to get her to stand up. While I was getting pad and pajamas back in place, she went out again. This time it was a major challenge. As light as she is, holding her up in a standing position when she is cannot assist is beyond the strength in this little sixty-six year old body. I tried to get her twisted around and on to the transfer chair. She slipped off on to the floor. Picking her up from the hard ceramic tile floor put my back in danger of damage. There were no other options that were available. I pulled her up and managed to get her into the transfer chair. I tried very hard to use my legs rather than back, since damaging my back would sabotage our system of survival.   There was a painful twinge.

When finally she was in transfer chair she was still not fully awake. The low BP leaves her brain an without adequate blood supply, so she is often minimally responsive after a major fainting spell. Since the bed was particularly high, getting her into bed so that she did not slide back on to the floor was difficult. I finally got her on the bed, twisted her into position, adjusted her on to her side and she is now secure and sleeping.

On the positive side of the fainting spells and only partial awakening, she has no memory of the events.  Sometimes she doubts that the spells really happened, but she seems now to accept it when I tell her about one.

In the journal, I added that she had had a noisy night before this episode. She was vocalizing and active, obviously having vivid dreams. One of the characteristics of people who experience Lewy Body Dementia is that they have very vivid dreams in which there is bodily movement and vocalizing. The normal dream process includes some sort of automatic disconnect of mind and body. LBD folks seem to lack that automatic disconnect so they tend to act out and speak out what they are dreaming. I have heard lots of laughing, crying, screaming and talking over the years.

Vacationing while having responsibility for someone needing full care is exhausting and frustrating. We spent a significant portion of the evening looking for a Baskin and Robbins Ice Cream store she was convinced she had seen more than once earlier in the day. There was none.

The day after the challenging night included the usual tasks that are added due to the presence of Parkinson’s in our household. As I describe them, I am embarrassed to talk as if they are a burden to me. Many of these tasks are well-understood by anyone who has been the primary parent of one or more children. Those responsible for little ones do many of these things routinely with little or no credit for doing tasks that are terribly difficult and draining. I understand far better what Mary Ann did as a stay-at-home Mom for two children. As I whine about the impact on me of things I do for Mary Ann, she has the primary burden of the disease and the resulting dependence on me to do them. She has more reason to whine than I have.

Morning duties included giving Mary Ann a shower, washing and drying her hair.  On vacation there is no bath aid. The routines at home, provide some security and order that helps us through the days. Vacations provide new challenges. After getting the shower and hair done, comes the medication ritual. There is an Exelon patch to be removed and new one put on. The old band-aid on one skin Cancer must be removed and a new one put on – Polysporin first. Then the other skin Cancer needs to be cleaned with Peroxide. Only after those duties are complete do I start my own morning regimen.

The breakfast as always here was wonderful. We arrived, I moved Mary Ann from her transfer chair to the chair at the table and put the transfer chair aside. Pills needed to be put in a container for her to take with the meal, then the daytime pills put in the timers and the timers set and started. Meals always include getting Mary Ann’s food arranged and prepared for her to eat. The omelet needed to be cut into bite sized pieces, the same with the sausage. What parent of little children has ever gotten to eat food while still hot. It just goes with the territory. For someone debilitated with Parkinson’s Disease, eating is a difficult task. The food tends to slide off the side of the place as it is chased to the edge. The food can end up in lots of unintended places. During mealtimes, my stomach is usually in a knot as I try to determine what to do and what not to do to help, as I watch things heading for a place that will create a mess for me to clean up. Certainly Mary Ann struggles to get meals eaten. She dislikes my help, but often allows it. Meals are more uncomfortable when eaten in a public setting.

The day included a self-guided tour that took us to see beautiful gardens, but demanded pushing the wheelchair for two or three miles on paths, sometimes paved and sometimes not, sometimes ADA approved and sometimes not. The circumstances allowed few options other than effort that got my heart pounding to a degree that left me wondering if I would have to call for help to make it back to the entrance. Today Mary Ann wanted to hunt for diamonds at a diamond mine around here. It was too far, so we ended up spending close to a couple of hours looking for quartz crystals, both of us in the hot sun, me digging through the gooey clay and Mary Ann, while in her wheel-chair, examining the discoveries .

Now that we are midstream in the trip, the question remains. Is it worth it?  It is much harder to handle things away than at home.  The barriers that must be dealt with are many.  We could stay home and watch television.  It would be so much easier.  A trip like this allows us to see things we could not see and do things we couldn’t do at home.  It gets us away, with new people.  It provides exercise and stimulation (sometimes more than we would otherwise choose).

Would we still do it?  Even knowing the realities, at the moment we would still choose to go.  We won’t be home for another two days.  I’ll let you know then if that is still my answer.

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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