Help from Others

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September 9, 2009

“That was fun!” She said when we got home.

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , |
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There was a very tasty ice cream treat to be relished.  That always sets the tone for a good time.  The conversation was lively, interesting, silly, serious, and, in general, entertaining.  Eddie and Carol are neighbors and members of the church from which I retired a year ago.  We headed down the block some time before 7pm and returned home some time after 9pm.  Shortly after we got in the door, Mary Ann said, “That was fun!”

If you asked me when last I heard her say spontaneously that she had fun, I would have difficulty coming up with an answer.  I have to admit that I have been struggllng with the caregiving role lately.  I am sure Mary Ann has been struggling with the quality of my caregiving and my impatience with her.  Before we left the house this evening we were not in the best frame of mind.  This evening was a much needed tonic for both of us.

Most of the time it is pretty hard to tell whether Mary Ann has enjoyed an activity.  Words do not come easily to her.  Even before the Parkinson’s Disease diminished her capacity for both verbal and non-verbal expressions of feelings, she was not very demonstrative.  It often took some cajoling to coax out an assessment of whatever we had done for entertainment.

Her response this evening sparked my trying to think of things that she enjoys.  Having been married for nearing 44 years, I can usually determine whether or not she has enjoyed an activity.  I am not always sure my conclusion is correct, but I suspect that most of the time I can tell.

We visited our Son, Daughter-in-Law and Granddaughter yesterday afternoon and evening.  She enjoys visiting our children, their Spouses and the Grandchildren.  That is always a sure bet for a good time for Mary Ann.  By the way, that visit included both pizza and ice cream — can’t beat that!

This morning Mary Ann went to her Tuesday Morning Bible Study.  While because of the confidentiality agreement, she can’t report on the content of their time together, I can tell she enjoys it.  When we are scheduling a doctor’s appointment or whatever it is, she always makes sure that we keep Tuesday mornings clear.  She gets up, even if she is tired and longing to sleep in, so that we can get her ready in time to make it to the class.

Mary Ann enjoys the Volunteers’ time at our home with her.  Yes, part of that is because when they are at the house, I head out and am not hovering over her.  She also has developed wonderful friendships with those who have come to stay with her over the years.  The Volunteers don’t come so much to give me time away, but to spend time with Mary Ann.

I know Mary Ann enjoys time at the library.  She would have loved to run a little book store or work in a library.

She has wanted to get to a movie at various times.  Depending on the movie, of course, she likes to get to the movie theater.  Admittedly, it is seldom that we find something we really want to see.

Mary Ann, of course, likes going out for ice cream or going to a restaurant for a meal.  There are a few televission shows that are must see’s for her.  At the moment The Closer and NCIS are pretty much at the top of her list.

I will keep looking and listening for signs that indicate whether or not Mary Ann has enjoyed an activity.  Her circumstances make it pretty tough to enjoy life.  At least I can try to make sure that we keep in her days plenty of things she enjoys.

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

 

September 3, 2009

Caregiver’s Life Preservers

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , |
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There are just a handful of us, usually four, who gather on the back deck or in the downstairs when the weather is uninviting (this is Kansas).  We begin at 7:30am each Wednesday morning.  With the disjointed and erratic sleep patterns in our household, caffeine is a great gift from God! Hot coffee is the delivery system of choice — yes, even in Kansas on hot summer days (not many this year).

Our central purpose for that two hours is to grow in our ability to engage the presence of God midstream in our days, no matter what we are doing.  We are a little slow.  We have been at this for probably seven years now and haven’t yet gotten it worked out.

That Spritual Formation Group time is one of my life preservers.  It is not a therapy group.  We have a book with readings and reflections to spark our thinking.  We do not understand life to be divided into compartments, one sacred and the other secular, or one physical and one spiritual.  We understand life to be one thing, and God to be its source and sustenance.

For whatever reason or reasons, this is a particularly unsettling time for me.  I am grateful for the lifesavers that are available to me.

One of the lifesavers is the sanctuary that is emerging behind our house.  The deck has always been an inviting place.  While it is probably no more than thirty feet from the back of the deck to the wooden privacy fence separating us from the next subdivision, there are now many good sized trees filling that space, some that we planted.  The trees and the view to either side extend pretty much without obstruction for the equivalent of at least a couple of blocks.  The fence behind us is up a fairly steep incline.  The combination of that hill, the fence, and the trees create the feeling of seclusion.

The multiple bird feeders and those who dine at them add to the sensation of an outdoor sanctuary in the woods.  Then there is the waterfall.  Four levels cascade over well placed rocks, each level adding to the volume of that wonderful sound of falling water.  That sound covers some of the people and vehicle sounds, feeding the sense of seclusion.

Some friends, Doug and Marikay, brought over additional plants for the wetland area created around the waterfall.  They also brought an old branch and placed it on the gravel base among the plants and rocks.  I am intrigued by that old branch.  It is certainly old — old enough to have patches of lichen covering it. The color of the lichen matches the lichen on the rocks and the color of the needles on the cypress tree that hangs over that part of the waterfall.

One of the things that intrigues me about the branch is the metaphor it provides for life, certainly the life we are living.  The branch is weathered and gnarled and without symmetry.  Any old farmer would have long since cut it up for firewood or burned it in a brushpile.  By the way, I like old farmers.  There is an old farmer living inside me — along with a young rebel.

With eyes to see it, there is an elegance and beauty that transcends symmetry and smooth surfaces and orderly shapes.  I wonder what that branch has seen, who has stepped over it, or climbed on it, or made its nest in it, what has marked its territory on it.  I wonder what stories it could tell.  Life as it is really lived is weathered, gnarled and without symmetry.  Trying to make life pretty and pleasing to the eye, wastes precious time needed to live it.

Our life is not pretty.  It is often smelly and ugly and messy, and certainly without a shred of orderliness.  It is also beautiful, deeply fulfilling, bursting with meaning and purpose, often emerging from the very ugliness itself.  I would not trade our cracks and crevasses and patches of lichen.

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

 

September 1, 2009

Missed the Parkinson’s Symposium

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , |
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I got up at 5:30am on Saturday, showered, dressed and was ready by five minutes to 6:00am to start the process of getting ready to go to Kansas City for the Parkinson’s Symposium.  We would have to be on the road by 7:30am to make it on time.  I had already complained to the Dr. about the early start time for the target audience who have mobility and sleep problems.  He said the issue was finishing before lunch.  Registration was at 8am and the program started at 9am.  Living an hour and a quarter away added to the time issue.

Since I thought maybe Mary Ann could get ready in an hour (normally including morning chores, the minimum prep time is two hours), I let her sleep another half hour.   At about 6:30am, as I helped her to the commode, she said, let’s stay home.   I knew it would not work to try to force her to go. 

I had initiated plans for a luncheon with friends in Kansas City to celebrate two birthdays members of the group were having.  I told her that at least we ought to go to KC in time for that meal.  After all, I had started the process of arranging the meal out.  She agreed.  We both went back to bed for a couple more hours. 

It was good to visit with friends of thirty-five years.  Even though we are only an hour or so from that crew, we end up getting together only four or five times a year, if that. 

For a variety of reasons, the weekend seemed to provide a number of reality checks that reinforced the level of limits on our lives and the concomitant sense of isolation. 

Sunday morning a Volunteer came.  Edie always brings whatever is needed to leave behind a full meal, very tasty, with lots of variety.  During the Volunteer time I headed up to the Lake for a while and then to the marsh below the dam.   It was a helpful time.  Feeling out of sorts and searching for some sense of renewal, the combination of devotional reading and sensory refreshment was especially meaningful. 

The book (about spiritual formation) is speaking to my need, providing the sort of intellectual framework that fertilizes my roots and generates hope for growth.

What flooded my senses provided the grounding in the natural world that helps me reframe my situation.  As I stood at the edge of the lake, the gulls spread over the water were screaming.  I have no idea why, but they were screaming.  I guess that is just the way gulls vocalize.  Nearby, one gull flew over another that was sitting on the water.  The flying gull made what sounded like some belligerent remarks, and the one on the water started screaming at the one flying.  In other places on the lake, occasionally one gull would crash land into another and a skirmish would ensue.  I don’t think this is mating season.  I will have to ask a birder what was going on. 

There were Cormorants diving for food.  A raucous Great Blue Heron flew by joining the conversation as he flew.   I watched a butterfly go by and come very close to becoming a snack for a Barn Swallow that just grazed it.   

The highlight was what I had seen last week and thought to be a juvenile American Bald Eagle.  My birding expert, whom I call Bob, after I reported the sighting, suggested that due to a flying pattern I descibed it might have been an Osprey.  This week the bird came close enough to confirm that is was an Osprey.  It had the telltale black mask on its face.  In fact it dove into the water right in front of me to get a fish — an unsuccesful fishing trip.  As I continued to watch, another bird appeared in the distance.  It also flew toward me, and I was able to determine that it was a second Osprey. 

I spent some time walking by the marsh, providing a little exercise, much needed.  The lifting and moving and turning of Mary Ann provides some strength training, but my life is pretty much void of any cardiovascular conditioning.  A combination of creativity and discipline seems to be the path toward better physical and spiritual health.  I am better at the creativity than the discipline.  I am way better at talking and thinking than I am at doing. 

We are in another restless night.  It has been no more than fifteen minutes between needs for the last two or three hours.  It is hard to muster the energy for moving from thinking to doing when very tired and tethered to another person whose needs are constant. 

Yesterday there was what felt like the start of the flu during the evening after church and into the night.  Chills came for a time.  Instead of writing a post on this blog, I went to bed in hopes of getting whatever it was to let go.  Since I simply can’t be sick due to Mary Ann’s circumstances, I got better today.  We will see what comes. 

This is a very thoughtful time for me, with lots of feelings converging.  My hope is that there will be enough time for processing, and that a healthier pattern of living will emerge.  At the moment, I am shutting down.  It is time to get to bed!

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 28, 2009

So Many Thoughtful and Helpful People!

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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The phone rang this afternoon while Mary Ann was napping.  It was a former parishioner who was in trouble.  She and her husband were struggling with what to do.  They had eaten all they could of the wonderfully decadent chocolate dessert and were at a loss as to what to do with the last two pieces.  Could they bring themselves to throw them away???

When she finished describing their distressing situation, I made a remarkably generous offer.  You may not believe the level of my generosity, but here is what I offered.  I just blurted it out without even thinking.  Isn’t that the way heroes often describe their heroic acts — “I just did it without thinking.”  I told her that Mary Ann and I would eat those two pieces of dessert for her!!

She was so grateful, she and her husband brought them to our house.  It just feels good to do something to help other people when they are in need.

Last week I left the house on Tuesday evening to spend some quiet time away while a Volunteer spent time with Mary Ann.  There was one garden tomato left from a number that had been given to us.  By the time I returned that evening, there were thirteen with the a call promising more the next day, raising the total to twenty-one.  There were zucchini, a squash, a melon that had been delivered with the tomatoes that evening.  The next day the promised tomatoes came, plus some additional ones from a Volunteer who just brought some with her.  I have already eaten most of the tomatoes, and another ten came on Sunday.

Monday evening of this week after being out for a while, I came home to find a warm cobbler fresh from the oven that a former parishioner had delivered, along with a small vase filled to overflowing with brightly colored blossoms.

Today I was treated to lunch out while a Volunteer spent time with Mary Ann.  That is a monthly treat.

In the last fifteen days there has been at least one Volunteer at some time during the day on eleven of those days.  While schedules don’t usually allow Volunteers to come quite that often, it is overwhelming to think about how many people break open their busy days to make room for time at our home.  It is quite humbling to see just how thoughtful and generous people are.  The hours that Volunteer Coordinator Mary spends just scheduling all those people is a testament to that generosity.

It is hard not to feel guilty in the face of so many people in circumstances like ours, often in much more difficult circumstances, who don’t have a cadre of Volunteers and a Mary to schedule them. There are so many who are trapped in their own homes most of the time because one or both is suffering from chronic illness.  Those days when there are no Volunteers, or Mary Ann is having a bad day that keeps us in, or I have gotten sick, we have a taste of that kind of confinement and the loneliness it brings, the sensation of helplessness. As difficult as it is even with all the Volunteers, the thoughtful and generous people that surround us — as difficult as it is to manage full time caregiving, it is hard to imagine the challenge of that caregiving without support.

If you know someone in circumstances like ours, give him/her a call and ask, “What can I do to help?”  If they can’t think of anything when you call, offer to come over and help them make a list of answers to give people when they ask that question.  Then offer to check around, contact some folks who might be willing to help, ask them what on the list they would be willing to do, and schedule the doing of that task.

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 26, 2009

Sleepless Nights Increase Hallucinations

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , , |
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It was 4am before Mary Ann finally went to sleep last night.  The hallucinations were vivid and constant.  The family of people and the raccoons were present much of the time, one or the other.  On two occasions I asked her whom she was talking to.  Once her answer was the raccoon; the other time it was the little girl (blue-eyed).  Today in what sounded like a lucid moment, she asked me if I was ever going to tell her about that family.  Needless to say, all I could do was respond that she would have to tell me about them, since she was the only one who could see them.

I have been going to bed early (for me) the last three nights in hopes that my presence in the bedroom might reassure her and allow her to settle.  She was restless all three nights for much of the night.  Last night it was constant until that 4am time.  She was up and moving and talking and shuffling around.  At one point, I turned on the bright overhead light with four 60watt bulbs and left it on for an hour or two in hopes that the hallucinations would be diminished by the visibility.  It did not work.  The light just made it harder to sleep.

What is an odd dimension to this time is that at least three people who have spent time with or talked with Mary Ann in the last few days have commented on how lucid and communicative she has been, more so than usual.  It makes no sense!  She is wasted, but more lucid at times.  When we are alone she is often so tired that she can hardly hold her head up, she often struggles to track interactions at all.

What makes this a little easier to deal with is the fact that what we are experiencing is not different from what many in the online spouses of those with Lewy Body Dementia.  Others in that group share often that their Loved Ones see and talk with people who are not there.  The group members refer to the lucidity with others as “showtime.”  Many of those Caregivers have to deal with others only seeing their Loved Ones when they seem very lucid.

One of my Brothers phoned to tell us of a tragic death in the extended family.  Mary Ann took the call.  She was apparently very communicative.  After the call she shared what had happened with the Volunteer.  When I returned home she shared with me what had happened.  I phoned my Brother and discovered that the death was of a different family member.  That sort of misunderstanding can certainly happen.  That kind of confusion in tracking what has been said is not unusual any longer.  When a good friend had told both of us about her daughter being pregnant, Mary Ann was convinced that her young Granddaughter was the one who had become pregnant.

What is, of course, a consequence of the sleeples nights is that not only do Mary Ann’s hallucinations get worse, but my stamina wanes and we shift from creating a good quality of life to survival mode, just getting by.  Today was a busy day, Mary Ann’s morning Bible Study had the first meeting for the fall, we had appointments for haircuts for both of us, we had an appointment at the cemetary, and a Volunteer came for the evening.  She did manage to get a couple of hours of sleep in before supper.  On the monitor, she appears to be restless again.  I am not sure I am up to another sleepless night.

The last couple of evenings Volunteers have been with Mary Ann so that I could head up to the spot with the view.  There were a number of deer to be seen, including a buck with a six or more point rack.  There were lots of bats and a few nighthawks.  I enjoy watching them.  I did a little reading — hard to do when sleep deprived (thank goodness for caffeine), and I listened to some music.

For a week Mary Ann has been taking a slightly larger dose of Seroquel which is supposed to control the hallucinations and help her sleep.  So far, the opposite has been so.  I will give it another few days, and if there is no improvement, I will increase the dosage by another increment suggested as an option by her Neurologist.  If that doesn’t work, I will fax the details of her status to the Neurologist with a request for other options that might have a chance of improving our quality of life.

As I mentioned in an email to my Brother, life is not for sissies!

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 24, 2009

Morning Break: Humans and Wildlife Entertain

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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A Volunteer spent a portion of the morning with Mary Ann today.  I had a chance to head to a spot that often provides some quiet renewal time for reading, meditation, and watching for interesting birds.

This morning provided an odd combination of wildlilfe and human activity.  I enjoy sitting by a large reservoire to do some reading and thinking.  When I arrived in my spot, the weather was great.  I opened the windows, got out the binoculars and a devotional book.

There were lots of flying insects that surrounded and entered the van through the open windows, especially flies and mayflies.  I decided that since I was in their territory, I would not swat them and spend my limited time chasing them.  Actually, I realized that their presence was what was providing me with the aerial show by large numbers of Barn Swallows all around me. There were clusters of Killdeer that came noisily through at intervals.  I spotted some Cedar Waxwings in a nearby pine tree, along with lots of Kingbirds.

There were a few gulls on the water and flying around.  Later when I moved to the area below the dam, gulls were feeding at the overflow outlet where a loud rushing torrent was being released.

The Human entertainment included a fisherman not far from me.  There were lots of powerboats on the water.  There was one pulling a young woman who was tubing.  Then came the large, powerful speed boat with three young men on it.  It took a while to figure out what they were doing.  First of all, it became clear that the large objects across the back of the boat attached to a high bar, were loudspeakers producing ten or fifty or a hundred thousand decibels.  So much for the meditation.  It was the sort of music young people enjoy and old people can’t stand!

Then they started doing what they had come to do.  They were ski boarding — not just following behind the boat, but moving back and forth doing somersaults in the air.  It turned out to be genuinely entertaining.

As I watched all that activity, there was a rumbling off in the distance that got louder and louder.  I looked up at the dam, and there coming across were motorcycles — not just a few but what I would imagine was somewhere between two and three hundred of them in single file.  They were followed by about half as many cars of all sorts and colors and vintages.  In terms of my spirituality, I am something of a contemplative.  Not this morning!

After spending about as much time as was available to me, first next to the lake and then below the dam in a wildlife area, I headed up to drive across the dam. I had spotted what appeared to be a juvenile American Bald Eagle up above the dam, so I thought I would check it out.  I was treated to about fifteen minutes of that bird’s activity.  I have never before seen an eagle flying in place, sort of helicopter style.  This young Eagle did so more than once.

As I slowly continued across the top of the dam, I could see a dozen or so sail boats on the lake.  The day was exceptionally beautiful, and the white sails moving across the water added still more beauty to the experience.

As I left the lake and headed on a gravel road back to the highway, I was treated to a group of wild turkeys strutting around on the top of the hill by the road.

I was grateful for a good morning.  The day before had included an outing to a smaller lake with Mary Ann, but the night had been another restless one.  Yesterday, for some reason I had gotten in my mind that I could be more assertive in keeping us active, doing some self-care by exercising, maybe squeezing in some stimulating outings.  The sleepless night had revealed a certain futility in those hopes.

Yesterday, we both thought we had missed the Parkinson’s Symposium in Kansas City.  Mary Ann had indicated that she was not interested in going because it would demand our leaving here very early in the day, she dislikes large group activities, and she doesn’t get much out of the presentations.  I had thought about trying to go anyway, since I find them so valuable.  When I thought we had missed it today, I realized just how much I had wanted to go.  The good news is that the Symposium is next Saturday.  I decided to be assertive about our going and added the treat of checking with our KC friends about celebrating some birthdays at lunch after the Symposium.  At the moment, that is the plan.

All in all, it has been a weekend that has included some pleasant moments and some not so pleasant moments.  I guess that is the way life usually goes, no matter one’s circumstances. As always, 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 22, 2009

Caregiver/Spouse’s Look Back at Journey.

Posted by PeterT under Daily Challenges, Help from Others, Information on Parkinson's, Meaningful Caregiving, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , |
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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 14, 2009

Meaningful Caregiving Webinar

Posted by PeterT under Daily Challenges, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , |
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It has just turned into an impossibly frustrating night.  Mary Ann is in hallucination mode.  We were on hands and knees with her face within inches of one of the wheels on a leg of the bed, and she said, there it is, the baby raccoon.  Not long before that, she told me a raccoon had “taken a dump” on the sheet at the foot of the bed, and asked me to clean it up.  It took a long time of looking at that sheet for her to accept that the poop was no longer there, although since then she has not allowed me to pull the sheet up over her.  For the last half hour she has been picking up needles with thread in them from the floor.  I turned on the overhead light with four 60watt bulbs burning brightly and put her glasses on her face so that she could see clearly what was and was not there.  She still kept picking up the needles fearful that someone would get them stuck in a foot.  

I am now at the computer looking at her on the video monitor as she is leaning over the side of the bed busily trying to pick up things from the floor.  I am helpless to do anything about it!  I can only hope that at some point she will get tired enough that she will lie down and go to sleep.   She went to bed at about 9:30pm, it is now 11:30pm.  This could go on for hours. 

Tonight there was a Volunteer here with Mary Ann so that I could be at the computer attending an online Webinar provided by the Progressive Supranuclear Palsy (PSP) online support group.  PSP is in a family of diseases that overlaps with Lewy Body Dementia (LBD).   Parkinson’s Disease Dementia (PDD) is a Dementia with Lewy Bodies. 

While the specifics of PSP are somewhat different from PDD, the Caregiving dynamics are pretty much the same.  The primary presenter tonight was Janet Edmunson, whose husband, Charles, was diagnosed with PSP.  After he died, the autopsy revealed that a more accurate diagnosis was Cortical Basal Ganglionic Degeneration (CBGD) which is another in the family. 

One of the characteristics of PSP that she mentioned certainly rang true for Mary Ann (who is now up and at it again in the bedroom).  She called it impulsivity.  That means the person remaining convinced that he/she can still do things he/she is no longer able to do. 

I just made another trip into the bedroom to see if I could do anything to help her settle.  This time as I was trying to get her back into bed, she told me that she was cold and wanted to go home.  When I asked her where she was, she didn’t know, just that she was cold and this wasn’t home.  I asked her to lie down for a while under the covers so that I could finish writing and come to bed.  As she was starting to lie down, Mary Ann commented that the girl was going to fall on her head, but then the girl didn’t.  When I asked who it was, she said, Lisa (our Daughter).  When I asked where Lisa was, she said she was on the wall.  When I asked her if it was the real Lisa or a picture, Mary Ann said something about “the pick of the litter.”  She did recognize when she said that that it made no sense. 

Back to the Webinar.  Janet Edmunson listed some suggestions for Caregivers. 

  • Determine what you are passionate about and find a way to spend at least a little time regularly, keeping it in your life.
  • Explore life’s adventures, store up memories while you and your Loved One are able. 
  • Give yourself credit, affirming just how strong you have been even when pushed to the limits.  She quoted Eleanor Roosevelt’s comparing people to tea — we don’t know how strong we are until we are in hot water.
  • Give yourself grace (forgive yourself) when you blow it.  If you seem to be “blowing it” extremely often, get help. 
  • Accept that some friends will no longer visit, especially when your Loved One can no longer communicate.  It doesn’t mean they no longer care.  Suggest that they come in pairs so that they can talk with each other as your Loved One simply listens. 
  • The personality changes in your Loved One are not your Loved One, but the disease.  One of the consequences of the disease is that the filter, the value system, gets eroded. 
  • Consider using Hospice sooner rather than later.
  • It is normal to grieve even before your Loved One dies.
  • Look for gifts that only this type of tragedy can afford.

She concluded with this wish for Caregivers: May this make you better, not bitter. 

Well, I think I had better get into the bedroom and see if my going to bed helps any.  Her head has stayed still for the last few minutes.  By the way, when she was first getting into bed tonight, for some reason she asked me to take her blood pressure.  It was 110/70.  Can’t ask for better than that.  Her pulse is usually 60 or less, but this time it was 89.  I suspect the excitement of the hallucinations may have increase her heart rate.

It is now 12:30am.  Here is hoping and praying that she can stay settled for the night. 

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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.

 

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