September 6, 2009

Caregiver’s Life Preservers, Vol. 2

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The power of music to calm, to stir, to break through defenses is a wonder to behold.  An hour each of the last two evenings sitting in front of the audio system listening to music after Mary Ann has gone to bed has been time very well spent. 

For me, almost immediately when the music begins, it is as if all the frustrations and harsh realities of the day no longer exist.  Mind you, it has to be what is in my estimation, good music.  If it is trite, or shallow, or poorly performed, I simply have to turn it off and put in another CD.  Of course music is a matter of taste.  What grabs one person might repel another. 

I generally cannot use music as a background to doing other things.  Maybe it is the structure of my brain in particular, but I pretty much need to do one thing at a time.  I either read or listen to music, very seldom do I try to do both at the same time.  When I used to walk neighborhood streets for exercise, I could listen to a CD as I walked.  If I am out in the woods walking, I listen to what is around me.  I am not interested in blocking that out with music. 

Since we are homebound so much of the time and the television is going almost constantly, having an hour just for music is a luxury.   While I usually become engaged in what is going on in the music and immerse myself in it, there is often a journey on which it takes me.  That journey takes me through my defenses, on past the frustrations of the day, into layers of being that are closer to the core of who I am.  Not always, but often, I begin reflecting on very basic issues. 

The place to which the music often takes me is a place where I can wander around in my mind and heart, looking pretty directly into my failures and weaknesses, feeling the pain.  It is not scary or depressing, just real.  There in that core of who I am lives the Grace of God.  It is surrounded in that Grace that I am able to peal away the layers behind which I hide, even from myself.  When finally the journey has taken me through the last layer, there I find a sense of security and safety. 

Don’t misunderstand.  This is not always pleasant.  The place to which I go is not always a happy place.   Often the worst of what lives in me is exposed.  I certainly don’t always like what I see.  It is just that whatever it is does not have the last word on who and what I am.  The spark of life given to me with every breath comes from a Someone who wants me to be — whoever or whatever I am.   I have to say that more often than not, no matter what I have seen on the journey, I find it exhilirating and refreshing.  Maybe in a sense it is a way to reboot my mind and heart. 

All of us are coded differently and find renewal in different ways.  Our life preservers vary.  What is common to all who are full time Caregivers is the need for life preservers to hang on to regularly so that we don’t drown in our challenges and frustrations. 

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 5, 2009

Julia Childs I Ain’t

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I thawed the roast in the microwave and cut it into two pieces to be sure it thawed completely and would fit into the crockpot.  Then I heated the large pan to brown the meat in olive oil.  As usual, the stove and the floor in front of it glistened with the olive oil splatter before all sides of the the two pieces of beef were browned. 

I put the beef into the crock pot with some red wine and a packet of Onion soup mix and turned it on high.  Then I browned lots of onions and some garlic in the same pan and set it aside to put in the crock pot later. 

After a trip out to Bobo’s Drive-in and an enjoyable visit with the bearer of some chocolate (local source for chocolate is named Audrey), I got to the business of getting the veggies prepared and into the pot.  There were carrots, potatoes, some celery, the onions and garlic from earlier to be added.  After that had cooked a while, just for the heck of it, I tossed in a can of corn and a can of green beans.  I have trouble knowing when to stop when making these sorts of things.  I am of the school that says, whatever the ingredient, if some is good, more is better.  I have trouble with pots that seem consistently to be too small.  I did have enough sense to add a second packet of onion soup mix so that here would be enough seasoning to handle such a large quantity of food. 

The process began around noon.  The last of the veggies went in some time before 5pm.   It was about 7pm when we sat down to eat.   The potatoes still weren’t done.  Yes, I cut them into fairly small pieces so that they would cook more quickly. 

Needless to say, Mary Ann did not eat much of my culinary delight and needed a snack before bed (the usual little Snack Pack container of tapioca pudding).  The hallucinations are now interfering with her settling in and going to sleep.  It may be another long night.

By the way, I turned the crock pot on high after supper, and a couple of hours later it tasted great — to me.  I suspect Mary Ann will not be interested in trying it again.  That is our usual pattern. 

I guess it is a combination of laziness, lack of experience in cooking, and the disincentive of Mary Ann’s pretty narrow range of what is acceptable to her to eat that fuels my failure to launch in providing regular nourishing meals for Mary Ann.  Today is probably the first time in a week or so that I have attempted to do anything other than make sandwiches, take her out, give her what she brought back from the last time we went out, or eat the food that folks sometimes bring over or provide for us. 

I have to admit, that it continues to be a source of shame and embarrassment to me that I have not done better at fulfillling my Caregiving duties in the area of food preparation.  The food that I do prepare tastes good to me.  I love leftovers and eat as much as I can of what we have.  I  am over twenty pounds overweight — a lot for this five foot, six inch frame.  The freezer is full of food that I will eat and Mary Ann will not.  What I make is usually, as was so today, crammed full of veggies and all cooked together.  It is just not appetizing to her. 

Actually, I have no excuse for not doing a better job in this arena.  Our close friends in Kansas City include a husband caring for his wife with ALS.  Charlie does a great job of providing a variety of tasty and healthful meals.  I think Marlene would agree, other than that he doesn’t always listen to her instructions as he is cooking.  I am a reasonably intelligent person; I can read; I can (reluctantly) follow directions — as in recipes.  I have watched and enjoyed lots of cooking shows over the years.   There were Francois Pope (Chicago area), The Galloping Gourmet, The Frugal Gourmet, Justin Wilson — The Cajun Cook, Yan Can Cook, Lidia, plus all the recent and current Food Channel cooks.  You would think I might have absorbed something.  All I seem to have retained from all of it is a voracious appetite.  The cooking looks like fun, but the eating is funner!

Oh well, no one said it would be easy!  As long as there are Glory Day’s pizza by the slice, Long John Silver’s, Bobo’s, McFarland’s, The Classic Bean, Copper Oven, Perkin’s, Jersey Mike’s, New City Cafe, Panera’s, Steak and Shake, Subway (unless they keep showing that annoying commercial with the out of key singing), and a cluster of ice cream and frozen custard places, Mary Ann won’t starve (at least until we run out of money).   

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 4, 2009

What is it like to be in her shoes?

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , |
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At tonight’s Parkinson’s Support Group, one Volunteer got a taste of what it is like for her husband with Parkinson’s.  The Physical Therapist speaking to the group had her stand on some foam rubber and try to stand on one foot, then stand with her eyes closed.  She struggled to keep from falling.  She would have, had the Therapist not caught her.  The therapist then asked, how would you like to spend every waking moment struggling to deal with that kind of disability.  The therapist was addressing the Caregivers present.

I had two reactions: one was a feeling of guilt because I too often with impatience push Mary Ann to move more quickly doing whatever it is; the other was irritation that the terribly difficult task of the Caregivers was not acknowledged and appreciated.

The reality is that both reactions are valid.  All of us who are full time Caregivers lose patience and forget that those for whom we are caring can’t do the most basic things without great difficulty.  That they manage to do what they do is a testament to their courage and determination.

Caregivers have the impossible task of trying to anticipate the needs of another person who may not be able to verbalize those needs.  Then the Caregiver must put those needs ahead of his/her needs no matter how small or great they may be.  Caregivers also suffer from the whatever the disease their Loved One has.

I guess the only solution is to learn how to live in the tension between those two realities.  Forgetting just how difficult life is for someone with Parkinson’s or any chronic debilitating disease generates bitterness and frustration.  Denying the overwelming and draining task of being the arms and legs of another person as their Caregivers diminishes the ability to cope and find any joy in life.

It helped me to be reminded tonight of what Mary Ann is going through.  Better understanding of her plight makes it easier to treat our daily challenges as obstacles that need to be overcome, rather than relationship issues between us.  We are in this together.  We need all our intellectual, emotional, psychological and Spiritual resources to meet and defeat the real enemy, the Parkinson’s and its consequences.

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 29, 2009

Leaning to the Left

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

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

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

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

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

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

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

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

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

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

 

August 28, 2009

So Many Thoughtful and Helpful People!

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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 27, 2009

Raccoons: Running out of Names

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Apparently I have miscounted!  It is not only Gus, Belle and the Twins who have been feeding at the wildlife sanctuary that serves also as our back deck.  They eat the food I put out for the birds.  When the fourth one was in the trap two nights ago, I saw another one coming over to commiserate.  Apparently, the twins have an older sibling, uncle, aunt or cousin. 

Yesterday morning, number five was rummaging around in the trap.   I noticed that he had a darker coat of fur than the others.  He seemed a little bigger and somewhat more active.  Tim reported that it appeared to be a very aggressive male.  He had managed to pull the sheet metal holding the handle down into the trap.  He growled at Tim all the while he was handling the trape.  The others had not done so.  We are guessing that it might very well have been Gus. 

I put the trap back out last night, in case there are more.  No one showed.  It is out there again tonight.  My hope is that the entire family is now reunited in the lush corn field to which they have been relocated.   This adventure has been a bit of a distraction for this Caregiver.   I have used the nighttime trips to the commode as Raccoon check time.  Somehow it helps make the usually frustrating nights a little more bearable. 

Just an update on the sleepless nights:  Last night Mary Ann slept like a rock.  She was sound asleep until I talked with her a few minutes before the Bath Aide arrived around 8:45am.  She does seem a bit restless yet tonight, but I am hoping sleep will come soon.  I was up early to prepare for the Spiritual Formation Group that meets at our home at 7:30am.  Tomorrow morning would allow an extra hour or so of sleep.  My hope is that tonight will allow some catching up.  At the moment it is only a hope. 

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

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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.

 

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