August 22, 2009

Caregiver/Spouse’s Look Back at Journey.

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Last night when sharing our history with our hosts at dinner, the look back opened a process that has continued today.  I asked Mary Ann if she was comfortable or uncomfortable with the conversation last evening.  The questions of her were direct and personal.  She said that she did feel comfortable. 

As I mentioned in last night’s post, Mary Ann was candid about her feelings.  She was clear that she was not resentful toward God for her situation, but she was resentful toward me for moving the family from what had been home for fifteen years.   

When we moved from Kansas City to Oklahoma City, I moved five months sooner than Mary Ann and the kids.  They needed to finish school (Lisa, her Senior Year in high School and Micah, his Eighth Grade year at a Kindergarten through 8th Grade school).   

It was shortly after I moved to OKC that Mary Ann phoned from Kansas City with the news that she had been diagnosed with Parkinson’s.  Her memory of the move is colored by the pain of that diagnosis, having to deal with her feelings without my presence for support.  She had the whole load of the family while trying to process that news. 

What, in my estimation, made it more painful was that Mary Ann was adamant about keeping the diagnosis a secret.  That secret was kept through the move and on into our new life in OKC for a full five years. 

With little stamina for involvement with others since she also worked part time at first and then close to full time for the last six of our nine years there, it was hard for her to develop close friendships from which she could draw support. 

It was during that time that we experienced very poor medical care from Neurologists who had little knowledge of Parkinson’s other than the very basic medication addressing only the motor symptoms.  Since she has the early onset variety, there are more complexities than presented when it is diagnosed later in life. 

We managed to get to the annual Parkinson’s Symposium at the University of Kansas Medical Center most years while we were in OKC.  As a result, we had access to the latest and best information on Parkonson’s Disease and its treatment.  We seemed to have more information than any of the Neurologists to whom Mary Ann went during those nine years in OKC.  One Neurologist had little to say in each appointment (ten minutes, sitting across from us at his desk).  He seemed mostly to be asking us how often we thought we should be taking the one basic medicine.  The next Neurologist questioned whether or not Mary Ann had Parkinson’s and concluded that the fact that the medication for Parkinson’s seemed to be working was all in her head.  He made the gesture folks use to indicate that someone is crazy.  Then at the end of the nine years, Mary Ann was hospitalized in Tulsa in a new Parkinson’s program.  The point of the stay was to work out the medicine regimen.  The staff administering the medication missed the timing of doses, the Neurologist dismissed a basic concern for timing the medicine away from meals high in protein (regularly reaffirmed in the literature and the presentations at the Parkinson’s Symposia).  Mary Ann ended up with a complex combination of regular and timed release versions of the one basic medicine.  The new regimen simply did not work.  She became very debilitated quickly. 

It was at that time that the move to the parish here in Kansas came.  Mary Ann commented last evening that the move back to Kansas, even though not back to Kansas City itself felt good to her.  She liked being close again to our friends in Kansas City.  Mary Ann is not the sentimental sort.  For her to say that was a very significant affirmation of that friendship. 

When we moved to here, Mary Ann went to KU Med Center and some of her best years followed.  She was willing to be open about the diagnosis.  The latest of the medications that help the basic one work more effectively worked well at controlling her symptoms.  She did not work any longer and had time to get to know people here.  When finally the Volunteers were needed and began coming, friendships grew at a rapid rate, many of them. 

As I look back, I suspect that Mary Ann’s resentment of me for taking her from KC was more a function of the struggle with Parkinson’s than anything else.  The people in OKC were as warm and loving and accepting as anyone could have hoped for.  Through my ministry, I developed some of the most meaningful relationships I have ever had and still cherish them.  Busyness while doing full time ministry here did not allow for much contact, but the feelings remain.  Mary Ann and I did spend some time together with other couples in the OKC congregation whose friendship we valued very much.  We remember them fondly even though circumstances have not allowed interactions since then. 

It continues to seem that since retiring, past relationships, those that have a long history are coming into focus to a greater extent than while I was busy with the day to day challenges of ministry.   I suppose it is mostly the obvious, that there is more time to think about the past.  I am sure it is also a way of filling the validation gap created by having days empty of the multiple tasks with potential for external affirmation, measureable successes and failures.  It is a time to process the impact of relationships, as well as look through the layers of meaning to be found in past experiences. 

It is clear that Mary Ann’s assessment of the journey and my assessment are much different.  Mary Ann has the Parkinson’s, I see it and live in close proximity to it.  She more than I, but we are both impacted by the consequences of the Disease.  However our experiences of it differ, we are living through it together, one day at a 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.

 

August 21, 2009

Ups and Downs, continued

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Mary Ann is in bed.  Tonight’s was a much later bedtime than usual.  We had a very enjoyable evening with new friends, Jim and Sally.  Since Jim and I are in the same profession, even though they are much younger than we are, we have lots in common.  One especially meaningful dimension to the evening was that Sally brought out Mary Ann by engaging her very directly in conversation.  Mary Ann was more thoughtful and responsive than I have observed in a very long time.  In the course of responding, she said that she expected to die soon.  She revealed her faith to be secure. She spoke in a way that suggested that she was not fearful and distressed, but accepting of her circumstances.  (I am inferring much of that from the limited responses and their tone.)  The evening was meaningful as well as enjoyable.  There was ice cream, guaranteeing a good evening.

The night of the day we visited the Neurologist (see last post) turned out to be a difficult one.  We had increased slightly the medication that seeks to diminish the hallucinations, but it certainly had no effect on then yet that night.  The hallucinations were as strong as ever.

Even though that next day we had a number of Volunteers, it was a tough day, as it always is after a sleepless night  Both of us get pretty grumpy.  Mary Ann got up very early again, even though she had not settled down until after 2am.  Since there was a Volunteer for that time, I was still able to get to the Spiritual Formation Group that meets at our house.

Later in the day, a friend and I had coffee and spent a couple of hours talking.  He had been a confidant and care partner during the last half of my ministry at the parish from which I retired.  It was probably good that we had as much time as we did away from each other, since we were both so tired.

We both slept very well last night.  As a result the day today was better.  The fainting and the hallucinations continue, but they still allow us a certain quality of life that allows us not to feel deprived or resentful or bitter.

The day is catching up with me.  I had best head for bed and hope for sleep.

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 19, 2009

Visit to Neurologist Specializing in Parkinson’s

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Today was our semi-annual visit to the Neurologist at the KU Medical Center’s Movement Disorder’s Clinic.  Dr. Pahwa is a national level Neurologist specializing in Parkinson’s Disease.  We have struggled mightily with this disease every time we have not been seeing either Dr. Koller before him or Dr. Pahwa.  Geography and insurance interfered with access to KU Med for a number of years during the twenty-two since Mary Ann’s diagnosis.

We are pretty well convinced that we have the best care available.  That is both good news and bad news.  It is good news since we have access to the latest and most effective treatments.  The bad news is that there is not much else we can do to improve Mary Ann’s ability to function.   This is the best we can expect.

Today, we reviewed the medications.  We reported on the changes that have been made.  At Mary Ann’s request, we reduced the dosage of Sinamet, the primary medication that treats the motor symptoms of Parkinson’s.  It is the same medication that has been used for decades.  With all the promising research projects going on, and the various news stories touting a potential cure, not much has changed since the middle of the last century in treating Parkinson’s.

The benefit of reducing the medication is that it has lots of side effects.  Since reducing the dosage Mary Ann has had fewer and less intense hot flashes that are shorter in duration.  There is a little less of the dyskinetic movements (as seen in Michael J. Fox) during the day.  Dr. Pahwa confirmed that change to be appropriate.  That is a medication that often is left to the patient to determine how much is taken.  Those changes are done within the range acceptable to the Neurologist.

I reported the increase in the Midodrine to keep Mary Ann’s blood pressure high enough to reduce the fainting spells (Orhostatic Hypotension) to a more manageable level of intensity and frequency.  The change in that medication was done in consultation with our Cardiologist, who prescribed the Midodrine.

We talked about the increase in hallucinations and their interference with sleeping.  As expected, he suggested a small increase in a medication called Seroquel.  He reminded us that one problem with increasing the Seroquel is that it can make the blood pressure problem worse.  Again, we are riding on a tiny margin between side effects battling one another.  We are in hopes that the contest will end in a draw.

I made the mistake of mentioning something about the online Lewy Body Dementia spouses’ group and information about the Autonomic Nervous System I researched on the Internet.  I can only guess that he is frustrated with Patients and Caregivers who second-guess his recommendations based on the often bad information.  I just made the observation that in looking up what the Parasympathetic side of the Autonomic Nervous system governs, the list included pretty much every area in which Mary Ann has a problem.  He was not rude, nor did he say anything much in response.  He just moved on to closure of the appointment.

I trust his knowledge and experience.  I just recognize that the more we know about the disease, the better we can do at dealing with multiple doctors and the more likely we are to make good decisions by actually understanding the options and their implications. That knowledge has been especially helpful when Mary Ann has gone to the Emergency Room and/or has been hospitalized.  The medical professionals there deal with such a variety of problems that they can’t possibly keep up on the details of all of the various diseases.

The next appointment is six months from now.  We will see if the increase in Seroquel has a positive effect.  Dr. Pahwa is willing to increase the dosage more if this does not work.  He increased the dosage from 100mg to 125mg.  He suggested that we move to 150mg if the smaller increase doesn’t move the hallucinations back to a level that does not interfere with sleep.  That decision is in our hands.

At the moment, we seem to have the best of what is available to deal with the Parkinson’s and the Dementia.  While we would like to have a better quality of life, our job is to make the best of what we have.

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 18, 2009

Ups and Downs plus Ordination Anniversary

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Logic sometimes seems to be completely useless in trying to figure out what to do.  In my last post, I was pleased with myself for keeping Mary Ann moving during the day to assure that she would sleep well.  In that post I reported that the hallucinations had diminished and she seemed to be down for the night.  So much for that observation.

After I finished that post, she started moving around.  The animals were back.  She was restless and we battled the animals for a couple of hours.  The next day was not much better.  There was a Volunteer in the morning who read to her.  I needed that break.  I headed up to the lake, listened to music and checked for wildlife.  As soon as I got back the usual issues that emerge when neither of us have gotten enough rest kept us at odds for much of the day.  Last night included some restlessness, but we both got a decent amount of sleep.

Today has gone reasonably well.  It is the day exactly forty years ago that I was Ordained, the day I became a Pastor.  We got out to a late lunch and splurged a bit, at least as much as can be done at an Applebee’s.  Our town has far too many restaurants, but few that are elegant and expensive (almost none).

There was a Volunteer tonight with Mary Ann.  I used the time to head up to my favorite spot nearby to watch the sunset and the wildlife.  A momma turkey and five young’uns provided some entertainment.  A doe settled down for some cud chewing about 200 feet way.  She seemed to enjoy the organ and choral music on a John Leavitt CD as it drifted out of the open window of the van.  She got up and left when the CD was done.  She has good taste in music.

There has been some nostalgia, maybe a bit of melancholy today.  The contrast between my life now and my life a couple of years ago is pretty dramatic.  During the years of ministry, most of my time (at least 60-70 hours a week) was spent connecting with other people face to face or via email.  Even when I was at home with Mary Ann, most of the time I wasn’t responding to her needs, I was at the computer interacting with people.

Because of the nature of my profession, there was lots of opportunity for being a part of people’s lives with the goal of making some sort of difference for good.  Whether I accomplished that or not is another matter.  That determination lies in the judgment of others.  All of that ceased completely at the end of the day on June 30, 2008.

I am grateful to have lifted from my shoulders the load of responsibility that goes with the role of Senior Pastor of a fairly large and very active congregation with hundreds of people serving as Volunteers as well as a substantial (and very capable) paid Staff.  I felt responsible to at least try to consistently do good work.  It was hard work.  As is always the case, the hard work is what produced the most meaningful accomplishments.  Gratefully, the central commodity we deliver is forgiveness.  It is a good thing, since I certainly needed lots of it for the things I did not get done or did not do well.

Today, it settled in me a little more deeply that that part of my life is over.  I found myself wanting to connect a bit with folks I have served over the years.  While my ministry has not been about me, but the One I follow, I would be lying if I claimed utter selflessness.

Today, I also recalled the most magnificent celebration I could have imagined when the congregation gathered for a retirement party a few weeks over a year ago.  What a party!  There was a sea of almost 500 people spread out in that room.  There was great food, great coffee, great ice cream, spectacular decorations, thoughtful gifts, and kind words that were way beyond anything I deserved (that’s not humility but honesty).  I will never forget that day.  No matter how bittersweet the day was today, I do not feel underappreciated.

Mary Ann is now in bed and on the monitor appears to be settled.  I will not predict how the night will go.  There was no napping today.  Logic would suggest that she would sleep.  Logic is irrelevant.  It will be what it will be. Actually, she has just had a trip to the commode and is now (seeing her on the monitor) moving about as if she is seeing things.

Tomorrow is a routine (three times a year) trip to the University of Kansas Department of Neurology’s Parkinson’s Center (Movement Disorders).  Hopefully Dr. Pahwa will have a suggestion for improving Mary Ann’ ability to rest at night with fewer troublesome hallucinations.

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 16, 2009

Better Day Today (Fainting and End Table Update)

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She is in bed watching the Chiefs play a pre-season football game.  They have not been doing well tonight, but they just scored a touchdown.  After the variety of problems reported in the last two evenings’ posts, today has been a better day for Mary Ann. 

She slept through the night with the usual few trips to the commode.  She got up at 9am.  The hallucinations seem to have subsided some for the moment.  She has been up all day, and went to bed to watch the rest of the game at about 8:30pm.  Of course there is no telling whether she will get to sleep or have a restless night after the game. 

There was a point this morning when she began to shut down some, but I offered to wash her hair.  She appreciates getting that done, so she chose to stay up.  After that we got in the car, ate a good lunch at Boss Hawg’s BBQ, ran errands that lasted long enough that we could justify getting a treat at G’s Frozen Custard.  There was a visit to the Library included.  We rounded out the errands with a trip to the grocery store. 

By that time it was late enough in the afternoon that we could watch the news and have a late supper.  I am, of course, hoping that keeping moving all day will help her sleep well tonight. 

As an update on the fainting problem, the Orthostatic Hypotension (the inability of the body to adjust the blood pressure after standing up), Mary Ann has returned to a more manageable pattern.  There is still some fainting, but not so much as to keep us homebound.  The episodes are fewer and generally milder.   The timing of the improvement seems to suggest that it just took the increase in dosage of Midodrine (blood pressure raising medicine) a few days to work.  Gratefully, the semi-annual Echocardiogram (and carotid artery ultrasound) is coming in about a month.  That will help us see how her heart is holding up to the raised blood pressure.  I have some concern that when I checked her BP the previous two days it was pretty low.  That might suggest that the Midodrine dosage is not adequate.  What encourages me is that the fainting spells have not increased.  I suspect it is too risky to raise the dosage of the Midodrine any more. 

One bit of good news on the periphery of our struggle is that the Black Walnut end table that my Dad made has been fixed and returned.  That is the one that broke one of the times Mary Ann fainted last month and fell on it.  (She was not hurt!)  Some good folks from the congregation, Myron and Orvin, worked on it and made it stronger than before by reinforcing it underneath.  They also  added a beautiful and protective new finish to it. 

The Chief’s lost, but it is only the first pre-season game.  Time will tell.

Today was a better day.  How tonight will go remains to be seen.  Then tomorrow is another day.   We will see what comes!

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

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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 12, 2009

Update: Raccoons

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Got one!  Now don’t worry, no one was hurt in the process, neither people nor raccoons.  It was little Tommy.  He couldn’t resist the tuna flavored cat food in the live trap.  Sister Sally, along with Mom and Dad, Gus and Belle, have yet to venture in and snap the door shut.  While I am sure he misses the family (who I hope will join him soon), he is clearly old enough to fend for himself.  Those paws and claws looked a little menacing this morning. 

There is a luxurious new home, laden with food, that awaits them as, hopefully, they are all relocated to a more raccoon friendly neighborhood.  I was fine with one.  It was a little too much, however, when Belle started bringing the twins along regularly.  Then when Gus came and stood his ground, taking ownership of our deck, refusing to allow his human host anywhere near the deck, the decision was made that a relocation effort would be undertaken.   I suspect he is at least twenty-five pounds of intimidating bulk.  It is a good friend with experience in relocating raccoons who is providing the equipment, the expertise and the transportation to their new home.  Thanks, Tim!

While we have finally had a bit of success in the relocation project, I am not altogether confident that the whole family will cooperate.   The first attempt netted only an empty cat food can and an unsnapped trap.  The next night drew no interest from the raccoons.  The third try ended up with an empty cat food can, a snapped trap, but no occupant.  It is only the fourth try that has resulted in a relocation. 

I have loved animals all my life; my Dad did before me.  He was a conservationist before it was popular to be one.  No hunters were allowed on the property, although he trapped muskrats along the creek for a while.  When we caught fish, they were to be released again.  He fed the deer.  We watched a raccoon, Goldie by name (golden colored fur), raise her family.  He would pat the chickens on the head when he gathered eggs.  He could call birds with his whistling, owls with his imitation of their calls. 

I love wildlife, but there comes a time when the issue is territorial.  This is my house, my deck, and my bird food!  Sharing a little is one thing.  Eating large quantities of very expensive food and camping out on my deck is another.  One guest is okay once in a while, but moving the whole family in permanently is another matter. 

I have no idea what this subject has to do with Caregiving.  If there is any relevance, it has to do with keeping this Caregiver healthy.  It has been a focus of attention, something different from the routine demands of our situation.  The sight and sound of the waterfall in the back yard, the sounds of singing insects, birds chirping and jockeying for position on the bird feeders, all provide a kind of accessible therapy.  The raccoon relocation project is just another distraction that engages my energy and attention here at the house.   I guess, if the deck provides deck therapy, maybe this project is raccoon therapy (therapy for me, not the raccoons!).

One additional benefit provided by the relocation of the raccoons may be their removal from the bedroom hallucinations.  If they are no longer in the neighborhood, maybe they will no longer be in our bedroom.

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.

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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.

 

August 10, 2009

Some Days are Frustrating

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , , , , , |
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It seems so unfair to complain about frustrations with someone who is suffering from such a terrible cluster of diseases, Parkinson’s Disease, Parkinson’s Disease Dementia, and heart disease on top of all that.  My aches and pains and various annoyances are tiny by comparison to Mary Ann’s challenges.

Someone in the Lewy Body Dementia Spouses online group replied to me this way [I am paraphrasing]:  You may not have the disease, but, as the primary Caregiver, you suffer from it too.

Those of you who know Mary Ann love her and respect her very much.  Those who know her best know that she has a chip on her shoulder that refuses to allow her to let anyone push her around.  It is one of the things that drew me to her and one of the things that drives me crazy!

With this complex and maddening combination of symptoms that come and go and come again, sometimes in minutes, dealing with the ordinary daily activities can be utterly frustrating.

Mary Ann can move from concluding something completely untrue and impossible in her less lucid moments, seeing things that simply are not there, to being completely clear in her thinking, remembering events more accurately than can I. One result of the times of dementia and lucidity being interwoven together, is that I am not sure whether to take seriously what she is saying or not.  I am not sure if she is confused about something, unaware of what she is really saying or doing, or she is willfully exercising pushback, proving again that she can do what she chooses no matter what effect it has on me.

Last night was a restless night.  No amount of begging her to stay settled in bed could keep her from getting up.  Again, there were multiple trips to the commode, even when there appeared to be little or no actual need to use it.  There were changes in the covers, shifts from facing one direction to facing another, need for a snack.  Then this morning she decided to get up at 6:45am to eat and take pills.  Normally, she sleeps until 8:30am or 9:30am.  I was up with her most of the first half of the night.  There is no point in my trying to get to bed and to sleep during her restless times.

After pills and breakfast she wanted to watch television.  Once she is up, I have to be there with her, awake and accessible to her since she gets up and walks, subjecting herself to the likelihood of a fall.  Her schedule determines mine.  She reluctantly agreed to lie back down in bed.  Gratefully, she slept for almost three hours, allowing me to do the same to try to make up for a very sleepless night.

The frustrations continued with our at least daily battle over what to eat.  There were available to her, chicken salad that I had made, fresh sliced smoked turkey and provolone cheese, some lasagna from the freezer, some roast beef and vegetables from the freezer, eggs, bacon, fresh strawberries, blueberries, cantaloupe. seedless white grapes.  I spent at least forty-five minutes trying to get a response on what she would eat.  She came out to the kitchen in her search for something else different from what I had offered.  I asked about the lasagna, which she had liked very much.  She said it wasn’t as good the second time.  That one pushed me to the edge.  I asked again about the smoked turkey.  She said no.  Then, after almost an hour of this, she mentioned salami.  We had gotten that when we got the turkey at the store. It was hard for me to accept that it took that long to find our way to something she was willing to eat.

My assessment of her goal was that we go out to eat.  Since we can’t afford to eat out every day, that goal is frustrating to me.  We had gone out the last three days.  To waste all that food in the refrigerator because it just didn’t measure up to the wants of the moment is an intolerable thought to me.

The rest of the day was spent watching reruns of the most depressing and demoralizing accounts of the criminal behavior presented in vivid detail in a marathon of one of the incarnations of the Law and Order Series.  Since the house is small and I need to be very accessible to Mary Ann, it was hard to avoid at least seeing portions of some of them.

We did manage to get out for a while (a very hot day) to get some ice cream.  Then there was church tonight.  We had some freshly made food brought over to the house by a parishioner and friend later in the afternoon.

In writing this post, I have risked diminishing Mary Ann by speaking so candidly about my frustrations.  She has reason enough to be frustrated with me at least as much as I am with her at times.  She does not have the luxury of writing out those frustrations for others to read.

As unfair as it is, this is one of the ways I process my frustrations so that I can maintain my equilibrium as I serve her needs all day every day — and night.  My hope is that by putting my frustrations into words here, I can be a better husband and Caregiver to her for as many years as we have left together.

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

 

August 7, 2009

Restless Night

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , , |
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There is no clear and consistent reason that is obvious to either of us that explains the restless nights that come at random — and far too often.  Sometimes there have been a couple of long naps during the day that might explain it.  Not this time.  Sometimes there is caffeine later in the day; there was a little in the mid-afternoon.  Sometimes there has not been enough in her stomach, occasionally due to poor timing of an ice cream treat, stealing her appetite for supper.  Sometimes there is an activity the next day that has caught her attention and refuses to allow her to relax.

Sometimes it is the hallucinations.  That was the presenting reason two nights ago.  When I was using the monitor to watch, her head would lift up quickly and the she would look intently at something.  Her head moved in that way every minute or so, often less than a minute.  Often she would be up on her elbow, many times up and sitting on the side of the bed.  It lasted until some time between 3:30am and 4:00am.

The hallucinations were the usual ones, animals, threads, needles, people.  While I recognize there is a disease producing the problem, nonetheless, I got more frustrated as the night wore on.  There was, of course, no reasoning away the hallucinations.

Not long after we both finally got to sleep (a couple of commode trips during the sleep time), it was time for me to get up, since Wednesday morning is the Spiritual Formation group that meets on the deck at 7:30am.  I get up at 6:30am each Wednesday and move as quickly as I can to get myself showered and dressed, the coffee made (the most important task), set up the deck, get Mary Ann’s pills and yogurt and ice water and granola bar opened.

Normally on Wednesday mornings, I set up all the above items in the bedroom on a table next to her transfer chair so that if she wakes up before the group is done, she can get her pills taken and food in her stomach on her own.  She almost always sleeps until the bath aid comes around 9am.

Not yesterday!  After being awake and active until perhaps 3:45am, she got up shortly after 7am.   As a result, I needed to stay with her rather than go out to join the group.  After about forty-five minutes, she chose to get back into bed for a while.  I was able then to go out and participate in the group for a time.

It is embarrassing to admit how selfish I am, but I was mostly concerned about the pain in my back and the fact that both the night and my morning were being stolen from me.  I should have  been  more concerned about the challenges the day would bring Mary Ann, since she would be tired and the hallucinations would be worse  than usual.

The day went surprisingly well yesterday.  I began this post last evening but was too tired to finish it.  I just shut down.  We both got a decent night’s sleep last night.  For a few hours today, we had the wonderful gift of a young lady who lifted the wheel chair in and out of the car for a grocery store trip and our Parkinson’s Support Group meeting.  Since then a challenging commode trip and return to bed has irritated my back again, but it still seems to be improving some.  She appears a little restless at the moment, but I hope for some rest tonight.  As always, we will just see what tomorrow brings.

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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