Therapeutic Activities

Archived Posts from this Category

August 18, 2009

Ups and Downs plus Ordination Anniversary

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , |
Leave a Comment 

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 15, 2009

Caffeine: Cargiver’s Drug of Choice

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
1 Comment 

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

Posted by PeterT under Meaningful Caregiving, Therapeutic Activities | Tags: , , , , , , , , , , , , |
Leave a Comment 

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.

 

July 26, 2009

Are we being too cautious?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , |
Leave a Comment 

This morning I had a chance to go up to favorite spot I like to visit when there is a Sunday morning Volunteer.  (By the way, those who worry that we might not be getting to church, we attend the evening service on Sundays.)  I relish the chance for a little time to do some meditative reading, have some quiet time, and soak in the scenery and the wildlife, especially the birds.  I walked along the edge of a marsh below the dam, as I often do when I head up to the lake.  There are some Red-Winged Blackbirds that send out alarms and do fly-overs every time I take that path.  I am not sure what they think I am going to do, but they are determined that whatever it is, I don’t do it.

Something I wrote in my post yesterday came to mind as I spent the time away this morning.  Yesterday, I listed some of the things that I am not doing, options I have given up on for the moment, as we are living the life we have at the moment.  As I thought about that, I began to wonder if in the course of letting go of those options, I am also cutting back too much on what Mary Ann and I try to do to add interest to our lives.

While I have posted often with attitude, attitude that left the impression we will tackle anything, the truth is, I am often reluctant to push the envelop of our apparent limitations.

The disincentives that come with going out of the house to do much of anything seem pretty powerful.  I am afraid that sometimes I give those disincentives more power than they deserve.  It is so much easier to just go with the flow and do as little as possible that challenges us than it is to do the work of getting out.  I have to admit to just plain laziness.

Sometimes Mary Ann doesn’t want to tackle going out and needs for me to be more assertive.  Sometimes Mary Ann seems oblivious to the all the challenges and wants to go and do something, but I am the one that thinks of all the reasons not to do it. Sometimes it is just a matter of being tired because we have had a rough night, as in the night before last.

I don’t want Mary Ann to miss out on activities we are still able to do that may no longer be possible for us to do in the not too distant future.  At the same time, we both have to accept that one of the consequences of the Parkinon’s presence in our lives is that I need to do more of the work for both of us when we go out and participate in activities.  We cannot void those consequences and live the life we might have had if the Parkinson’s had not joined us.

Just as I have to accept what I need to do for Mary Ann to have a decent quality of life, Mary Ann has to accept that I have limited stamina and, frankly, have a lazy streak in me.  Not only do we need to live the life we have, not the one we wish we had, but we have to accept the spouse we have, not the one we would like him/her to be.   Otherwise we will always be disappointed with one another.

I won’t presume to speak for Mary Ann, but I have the spouse I want.  I accept and embrace all that comes with our life together.  In spite of the presence of the Parkinson’s in our lives, I want Mary Ann to have the best quality of life she can have.  I need to be careful not to be too cautious so that we do have the most fulfilling life we can given our circumstances.  At the same time, we need to accept each other’s limitations and imperfections, and not spend our time upset about what we are missing.  Our time is too precious to waste on regrets.

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

 

July 17, 2009

It ‘s Just an End Table!

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , |
Leave a Comment 

It was a terrible sounding crash.  I had just gone into the kitchen to take my morning vitamins.  She had had breakfast and pills, was dressed, had been to the bathroom, was watching a television program she likes.  Normally, that is a safe time to walk out of the room for a moment.

Not this time!  It sounded horrible.  I ran out to see what happened.  She was not hurt.  That is the most important thing.  The table lamp was glass, gratefully, it had not shattered when it went flying.  Everything on the end table was spread out on the floor, the phone, a thick ceramic coaster was broken in half, a few other items that had been sitting on it were here and there.  The speaker on the stand next to the table had fallen to the floor.  None of it hurt her.

The end table itself was broken into pieces.  She wasn’t hurt.  That is the important thing.  It is just an end table.  Why did it upset me so??  People are more important than things.

It is odd that some things carry more symbolic significance than the thing or the event itself.  My Dad made the end table.  He was not much of a woodworker, but for at time after he retired he made a number of things out of some beautiful Black Walnut boards. There is a history that is embedded in that table.

My Dad grew up on a farm, but worked in an office his entire career.  Throughout my childhood, we went for rides looking for the perfect piece of property in the country to buy.  When I was eleven years old, he found it, twenty-six acres of woods and creek with a few tillable acres on the other side of the creek included.

One day when Mom and Dad were out there puttering, the weather changed.  They headed into a little seven by ten foot structure made of a few boards and some screens for staying out there on occasion.  When the storm ended, there were at least twenty full sized trees that had blown down, Oak, Ash and Black Walnut.  Three of them had fallen on three sides of that seven by ten, flimsy box they were in during the storm.

Those trees were cut into three-quarter inch thick boards and then dried at a local lumber yard.  The Oak and Ash trees became board and bat siding on the house they built to move into when Dad retired.  The Black Walnut boards provided paneling for the basement and end tables and book cases and lamps and candlesticks, a coffee table, and other items that reside in the homes of their children, the five of us, no longer children since now we range in age from 66 to 80 years old.

It is just an end table.  It’s demise is a reminder that nothing in the house is safe.  The fall itself is another reminder that we are out of control here.  I reacted with loud questions, “why didn’t you push the button?”  It sits right by her hand.  I come and help when that electronic doorbell sounds. She has been fainting numerous times a day in the last couple of weeks.  I have asked again and again and again that she push the button, that she let me help her when she is walking.

Seeing Mary Ann lying on the floor, seeing the broken table, a lamp that could have broken and cut her, carried with it the painful reminder of how close we are to not being able to sustain this here at the house.  I couldn’t stop it from happening.  She wasn’t hurt, the damage was not to her, just to material things.  I won’t tie her in the chair, but short of that, there is no way to stop her from putting herself and our fragile life here at risk multiple times a day.

A Volunteer came over shortly after this happened.  She has taken the table to friend who will look at it to determine if the pieces can be put back together in some form or another.  We will see.  Then I lunched with a friend who has finally had to move his wife to a nursing home because he could no longer do the very things we are trying to do here.  The challenges of sustaining that arrangement at the nursing home are also daunting.  It is difficult to find the boundary between being able to manage at home and needing to move to residential care.  It is analogous to the plight of the frog in the water on the stove, heating up until he boils, never realizing the danger until it is too late.

While I am physically able to care for Mary Ann here, I will do so.  The one dynamic that complicates that detemination to care for her here is the ability emotionally to do it.  I released some frustration by talking loudly about my feelings when I saw what happened.  Talking with a friend with similar circumstances helped.  Sitting for an hour in my beautiful spot on the hill, watching deer(among them twin fawns), listening to music, thinking, praying, all helped.  Thinking about and now writing this post helps.

As always, the hardest part of an event like this morning’s fall is handling the fact that I am not the sweet, thoughtful Caregiver who is always nurturing, helping without a word of complaint, the Caregiver I should be.  I shouldn’t give a rip about an end table.  She didn’t want to do it.  Later in the day she said, “I am sorry I broke the end table.”  It just happened.  I can’t blame her, but, just as she can’t keep from popping up to walk when at some level she knows she can’t do so without putting our current life at risk, I can’t keep from reacting in that first moment with frustration knowing that it didn’t have to happen.  I need not to pretend that I don’t have feelings of frustration and bury them in that pretense. Trying to do that really would make me crazy.

On the positive side, once its over, we just get on with whatever needs to be done.  My loud talking provides an immediate safety valve release of frustration.  We return to a loving relationship.  The glass lamp is now at the other end of the couch in a place she very rarely goes near.  There is a floor lamp taking its original place.  For the moment in place of my Dad’s table there is an end table that I made, a simple one that should be easy to repair if broken.  I will begin a search for something to put there that has no corners into which she could fall, something with room for the phone and a few items to reside.

It is just an end table, but at the same time it is a symbol of much more in our system of survival here, physically and emotionally.  The table is broken, we are not.

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

 

July 4, 2009

Caregiver Reactions and Responses

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , |
[2] Comments 

It was a perfect time to be on the deck.  The temperature was in the high 70’s and there was a breeze blowing.  There were some hazy clouds occasionally filtering the bright sunshine.  The deck was partly in the shade and partly in the sun.  The sound of the splashing waterfall echoed providing accompaniment to the raucus squawking of Grackles and Blue Jays.  I read and thought and pondered and read and pondered some more.  It was a wonderful couple of hours.

I got Mary Ann’ s breakfast and pills done; then showered, shaved (yes, even though I wear a beard), and dressed.  The plan was to head to the grocery and then out to eat.  She stood up from the transfer chair for a moment and flopped down into it.  Whatever the switch is that turns off her ability to function, it switched her off.  The plan dissipated and a long nap ensued. 

Adapting quickly to a change in plans has never been easy for me.  If I got into my mind what we were going to do, frustration was my usual response to being derailed, a disabling frustration, leaving me grumpy and annoyed.   Today, video monitor in hand, I just headed out to the deck and had a great time.  In some ways I am learning to cope with the vagaries of the Parkinson’s Disease and Parkinson’s Disease Dementia.

When Mary Ann awakened from her nap, I got her dressed and ready to head out for lunch.  When we started the often endless task of picking a place to eat, she popped up with one we had not been to in years, Red Robin.  It seems to cater to the younger crowd, with a sort of boisterous atmosphere and very expensive burgers. 

I was happy that a decision came so quickly.  I mentioned the possibility of splitting a sandwich since they are large and costly.  I remember the first time we ate there.  It had just opened and there were lots of folks waiting for lunch.  Our name was on the list, but it seemed that others who had come after us were being seated.  I went in and asked why we had been waiting so long.  Somehow our name had been skipped.   As we were being seated, a manager came over and said that because of the long wait, lunch would be on them.  That was music to these frugal ears (big, but frugal).  Giddy with the thought of it, I decided to buy a beer, a Black and Tan (Guinness and Bass in the same glass).  As I was enjoying my beer, a bartender came by with a Black and Tan looking for the person who had ordered it.  He concluded that there had been some confusion, and I might as well have it.  While I just couldn’t manage to get two full beers down in one sitting (college days are over), it felt sort of luxurious to have them both sitting there for me to enjoy.  We had just had two full meals, a Coke for Mary Ann and a couple of imported draft beers for three dollars and change.  Yes, I did leave a tip based on the full price had we paid for the meals. 

This time we weren’t so lucky.  We got seated right away.  I had talked about our splitting a burger before we went in.  Then as we looked at the menu, both interested in the Salmon burger (made with a Salmon filet, not a salmon patty), I asked Mary Ann if we should go ahead and split the sandwich.  She always eats half and we take the other half home.  The burgers at Red Robin are between ten and eleven dollars each.   She said no.  It surprised me, since her normal response would have been yes.   I asked again just to be sure I hadn’t misunderstood.  She again said no. 

We ordered the two meals.  She finds it easiest to eat a sandwich if I cut it in half, and then cut the half in half again.  A quarter of a sandwich is about all she can manage to hold with her hands.  The fingers stiffen and lose dexterity when she is trying to hold on to something.  When she was working on the second quarter, she said, “I thought you were going to eat the other half.”  I am not sure exactly what happened that we miscommunicated so badly.  Red Robins are particularly noisy, and Mary Ann’s voice is very soft due to the Parkinson’s.  Most of the time I end up reading her lips when we are communicating in public, or in the car (can be challenging when driving).  It was annoying to think that we were paying eleven more dollars than we needed to, but I have come to be better at accepting and adapting.

One thing, however, that I cannot seem to accept, to which I struggle to adapt, is the messiness that goes with the dexterity problems.  I find it very hard to deal with my reaction to seeing the sandwich squeezed in her hand until most of it falls on the table her lap or the plate, sauce running through her fingers and down her arm.   Notice that what is hard to accept is not the messiness, but my reaction to it.  The reaction is internal.  My actions were attempts at helping her get the sandwich pieces back in her hand, suggesting she use the fork, then afterward cleaning her hands with napkins and a wipe from her purse.  I know she was uncomfortable with the cleaning I did, since it seemed that she was looking around to see if anyone was watching.

The messiness bothers me more than it does Mary Ann.  Part of it is that I happen to have grown up in a family with a Dad who was meticulous about eating habits.  Part of it is that Mary Ann doesn’t have the view that I have from across the table.  She is focused on getting the food into her mouth.  I see what doesn’t get there. 

Mary Ann did not choose to have limited dexterity.  All she wants to do is eat.  She does what is necessary to get that task accomplished.  My struggle is not with her messiness, it is with my inability to just take it in stride and ignore it.  I am self-conscious for her, when she is not.  I am embarrassed for her, when she is not.  It is hard to admit this, since she is the one living with the Parkinson’s and its impact on her ability to simply enjoy a meal.  I feel very petty.  In this regard, she is healthier than I am.   At least I have the sense not to allow my feelings to stop us from going out.  

Anyway, when we go out to eat, I don’t have to cook and clean up.  With that payoff, bring on the messiness! 

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

 

July 1, 2009

Caregivers Need Eyes to See and Ears to Hear

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , |
Leave a Comment 

It changed my whole perception of reality.  It only took thirty minutes to do it.  Nothing has looked the same since.  “A Time to See” is the name of the educational film made by Reinholdt Marxhausen and published in 1985. 

Reinholdt Marxhausen was extraordinarily gifted in the visual arts.  He saw things others could never have seen had he not pointed them out.  There were bottles on the window sill in his kitchen over the sink.  They were just bottles — not to Reinholdt Marxhausen.  They were an adventure in light and shadows and colors and darkness, changing character at different times during the day, different times during the year. 

Alzheimer’s Dementia has stolen from him his extraordinary gifts in the visual arts.  His impact has continued in many of his students and all who have known him.  I only know him through friends and that film that made such a lasting impression on me. 

What brought the film to mind was writing the sermon for the ordination of Karl into the ministry.  Karl has been a student where Marxhausen taught.  Karl was influenced by the legacy of Reinholdt Marxhausen when he was the the peak of his ability. 

For me, the center of the legacy is the recognition that what a person sees depends on his/her ability to look past the object to its relationship with what is around it.  The capacity to really see, allows the most ordinary found items to become extraordinary as shadows and colors and shapes and textures suggest something far more than ordinary. 

There is a commonality about the story line in the lives of Reinholdt and Karl and PeterT (author of this blog).   Reinholdt has seen his ability to make art diminish as Alzheimer’s has taken its toll.  Karl’s mother died at the age of fifty.  At one point she was diagnosed with Pick’s Disease, a form of Alzheimer’s.  Karl’s Grandmother died of what appeared to be a form of Alzheimer’s Dementia.  My wife, Mary Ann, has been diagnosed with Parkinson’s Disease Dementia. 

The objective realities in our lives hardly present beauty to the beholder, at least at first glance.  There is a painful ugliness in the world of Dementia whatever the specific diagnosis.  Karl and I have learned from Reinholdt that it is a time to see.  It is time to look at objective and sometimes very painful realities and see more than the obvious.  We need eyes to see what lies behind, above, below, and beside what we have experienced and are experiencing.  We need to see how what lies before us and around us looks from different angles.  We need to see the colors and shapes and textures, listen to the sounds of what we encounter.  We need to allow the possibility that there is more than meets the eye lurking what we have and are going through. 

There is beauty to be found, there is meaning to be found.  It can be seen if we have eyes to see.  It is often said that beauty is in the eye of the beholder.  I don’t suppose beauty really exists until we add the capacity to see it, to hear it.  If there will be beauty and meaning in our lives, especially those of us who deal with dementia, the beauty will come from within us as we look at what we are experiencing and see it for more than what first meets the eye.

My life has been enriched by taking time to really see what is around me.  Karl has seen what his Mother and Grandmother with through and has grown a gentle strength and wisdom beyond his years. 

Having said all of that, I am now struggling with finding the beauty in three hours of trips into the bedroom every few minutes to deal with one need or another, moments ago (1:30am) the need for some food, followed by the need for some water, after multiple turns in bed, trips to the commode, adjustments of the sheet and blanket and a few concerns with the wildlife in the bed.  Right now, I would find beauty in a wife finally getting to 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.

 

June 28, 2009

Deck Retreat: Wildlife Population Grows

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , |
Leave a Comment 

…and baby makes three!  Actually, it is Mom and two babies.  One raccoon is sort of a novelty.  Three raccoons is two over quota.  The young’uns are not all that well behaved either.  The banging at 3:30am turned out to be one of the babies knocking a ceramic pot holding an asparagus fern off the old wooden box it was sitting on.

After watching them for a while, I decided it was time to get them off the deck before the kids did any more damage.  I turned the deck light on and off a few times to scare them off.  Not one of them even flinched.  Mom and one of the youngsters kept eating what the squirrels had left in the pan of oil type sunflower seeds I provide to keep the squirrels attention away from the bird feeders.  The other youngster, I suspect, is the problem child.  He/she messed around some more and then finally left a while after the other two had headed off and under the deck.

The lights in the waterfall are now in, and as a result nighttime deck therapy is an  option.  Each of the four levels has a light at its base. The light is invisible until the timer turns it on.  Neighbors Tom and Amy and I sat on the deck for a while and talked, just enjoying the sound and sight of it.

What makes sitting on the deck possible is that the little seven inch screen on the A-V monitor keeps Mary Ann in view.  I can see when she starts moving and needs my help.  Without the monitor, I would need to head into the house every few minutes to be sure she didn’t need something.  This way I only have go when she actually needs me.  I have now ordered a second camera so that both the bedroom and living room can be seen by just moving the channel switch from A to B.  Again, the screen and audio-visual monitor is a Summer 2500 available at Babies R Us.

Mary Ann and I headed into Kansas City to spend time this afternoon with friends we have known since the early 1970’s.  The time there is always refreshing.  One couple in our crew, like us, is a caregiver/receiver couple.  Marlene has ALS. Charlie has retired (mostly) and is now a full-time Caregiver.  He is the one who sent me a beautifully written email when I first revealed my decision to retire and spend full time helping Mary Ann with her needs. In the email Charlie told me what an honor it is to be able to have the role of Caregiver.

As always, we enjoyed the time together.  There is no self-consciousness to distract from the relaxed friendship.  Whatever special needs Mary Ann has are just taken for granted.  Charlie and Marlene often have helpful suggestions.  There are ramps into the house and on to their deck.  The arrangement of furniture allows space for wheel chair movement.  Marlene uses a motorized wheelchair.

We returned home, and I have managed a few minutes on the deck with Mary Ann securely in bed.  Having just fallen asleep for a moment at the keyboard, i think it is time to post this draft and 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.

 

June 26, 2009

Caregiver needs Deck Therapy

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , |
Leave a Comment 

Almost done!  The four level waterfall needs only the one watt light fixtures that produce twenty watts of light at the base of each of the four levels.  They will be installed tomorrow.  

The plants are now all in place.  Brad even brought some from his own yard to put in an area above the lined portion, his gift to us.  His Dad has Parkinson’s and we have come to know his parents at the Parkinson’s Support Group meetings.  Brad has put forth extra effort at every turn.  The end result is more than Mary Ann and I could have hoped for. 

The Mallards are now in duck heaven – our back yard.  They were hanging out there last evening and came today five minutes after Brad and his crew left. 

I also hung out on the deck last evening listening to the waterfall as rain and thunder and lightening came through.   While it was raining I sat on the portion of the deck that is covered with a section of the roof.  The wind cooled the air so that the experience was wonderful. 

Mary Ann and I spent some time this morning on the deck before the day heated up.  I got her out to a lawn chair to sit for a while.  Then she got up and walked to the rail to get a better look at the waterfall.  As she started to faint, I tried to pull a chair over behind her.  It didn’t work.  I let her down to the deck.  As she lay there, I went into the house and got the transfer chair so that I would eventually be able to get her into the house.  During the morning, before, and then out on the deck she had had some small fainting spells.  The one at the rail was a substantial one, one that turns into a sort of siezure.  As usual, there was some intestinal activity that followed.  Some time I intend to ask our Gastroenterologist for an explanation of that phenomenon. 

Last night, the third in a row, Mary Ann had trouble settling down and getting to sleep.  As expected, the hallucinations have been a little more active the past few days.

The reason I titled this post “Caregiver needs Deck Therapy” is that today was a pop up day.  Most of the times I went out to talk with Brad and the crew about something, I very specifically asked Mary Ann to stay seated while I was outside.  Of course I made sure that she had ice water, the television was tuned to something she liked, and that she didn’t need to get to the bathroom.  For the most part she did as I asked during those times. 

Other than that, Mary Ann popped up every few minutes.  When I answered the phone or made a phone call, she was up.  When I went into the kitchen to put things in the dishwasher she popped up.  When I tried to get food ready for her she popped up.  When I went to the bathroom she popped up.  It seemed that pretty much every time I sat down she popped up. 

As I have shared many times, falling is a major issue.  The fact that this was also a fainting day made it even more challenging.  Last I heard, aspirating food and falling are the two most likely events to end the life of someone with Parkinson’s.  People don’t die of Parkinson’s itself.   Mary Ann was falling generally more than once a day until the torn stitches a few weeks ago.  Since then she has fallen very seldom, at least by the pre-stitch-tearing measure. 

I realized today the reason the falls have diminished so much.  I am moving very quickly to be right there whenever she stands up to walk.  I offer my elbow for her to hold, thereby stabilizing herself while walking, or I put my hand gently on the gait belt she always wears so that I can help her regain her equilibrium if she gets off balance.  The A-V monitor helps me anticipate her getting up so that I can be there by the time she is up. 

The challenge is that I can’t keep her in view every moment.  The monitor has to be plugged in and within view for me to use it.  I can’t move it with me every time I walk into the other room, head down the hall just for a moment, or go to the bathroom.  At the first sound of movement, I move as fast as I can, sometimes even managing to get this sixty-six year old body to run, to get where she is before she falls. 

Today, I must have jumped and run thirty or forty times.  That is only a guess; it may have been a thousand times!  While as her Caregiver I should just take that in stride, if every day were like today, I am not sure I could do it.  Not long ago I used the metaphor of a marionette whose strings were being pulled by someone else as a  way to describe the feelings of being a full time Caregiver.  That was the sensation today.  She popped up and my arms and legs moved. 

I needed some time on the deck this evening.  The residual heat from the day made it much less bearable than last evening.  That respite and this post are my way of settling down and allowing the frustration to dissipate.  I understand that Mary Ann’s popping up is not a malicious attempt at making my life difficult.  In her mind it has nothing to do with me.  It is my problem that I come running when she gets up.  I suppose, if that is what she is thinking, she is right.  Nonetheless, the truth is, I need to keep her from falling to the degree it is possible not only to keep her safe but to keep my life from becoming more difficult.  If she hurts herself, it hurts both of us.  And, yes, while in my most rational moments I recognize that the disease is the cause of this annoying behavior, sometimes it feels as if she doesn’t care what impact her actions have on me. 

Today is done.  There have been many good moments along with the frustrating ones.  I celebrate the new retreat center behind our house.  I suspect that there will be need for some Deck Therapy tomorrow.  Then there will be lights!

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.

 

June 21, 2009

Caregiver’s Moment of Melancholy

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , |
Leave a Comment 

Music seems to crack open my mind and heart in ways that most anything else cannot.  It is a good thing when it happens.  Needless to say for those who have read this blog, my mode of operation for handling stressful situations is to think my way through them.  I put words together in my mind that frame whatever it is in an intellectual structure that makes it seem more manageable to me. Music seems to dismantle my neatly formed defensive structures and feeling overcomes thinking for a time.

Tonight I listened to music for about an hour and a half, a couple of CD’s.  One was done by a composer named Marty Haugen.  He writes liturgical music. Much of what he writes has a simplicity and a melodic style that is quite disarming.  In my last couple of decades in the ministry, Marty Haugen’s music often found its way into worship services.  The other CD was one in the Celtic Woman series.  My defenses are of absolutely no use in the face of the crystal clear sweetness of those lovely voices.

In her comment on last night’s post, Sharon touched on the one thing that puts into perspective all that we struggle with as full time Caregivers of our spouses.  The time we have with our spouses is of great value against the backdrop of what is coming.  There is no predicting the future.  I may die before Mary Ann.  For most of us in this stage of caregiving, the likelihood is that we will outlive our chronically Ill spouses.

The music tonight cracked open my heart and mind, and that likelihood surfaced.

I spent almost forty years in the business of helping people through times of grieving someone they loved who had died.  I have done more funerals than I can count.  I have buried people of all ages and circumstances from those who died in the womb to those who lived to within days of a hundred years old.  I have buried people who died accidental deaths and people who suffered a violent death at the hands of a perpetrator.  I have buried people who battled long and hard some form of Cancer before they died.  I have buried one of my best friends.  I preached at the funerals of two of Mary Ann’s brothers who died of Cancer, each at the age of fifty-one.  I preached at the Memorial Service for Mary Ann’s Mother.  I preached at my own Mother’s funeral. I know how to do a funeral and how to counsel people in preparation for the funeral and how to minister to them as they grieve afterward.

Tonight, broken open by the music, my thoughts and feelings went to a place of great pain. Just for a moment, I imagined myself sitting in that front pew feeling the deep sadness there.  Then, I suppose because I did it for my Mother-in-Law and my Mom, I pictured myself doing a Memorial Service in Northern Illinois where we grew up.  Many in the family there would not be able to travel to Kansas.  Mary Ann’s very best friends of more than fifty-five years are there, her Sisters-in-law, nephews and nieces who love her very much, my brothers and sisters and their families, are all there or close enough to get there.  I wondered if I could do the service in a way that would center on Mary Ann’s life and not my grief.  Who else would or could do it?  We have been gone from there for almost fifty years.

For those of you who know me personally, please do not be concerned that I am in some sort of deep emotional struggle.  It was simply a time of encountering a potential future reality.  It is a good thing to be able to go there, grieve, and come back from there.  What I encountered there was painful beyond description.  Yes, I have whined about the struggles of taking care of Mary Ann, the frustrations.  I have shared that I get irritated at her and get grumpy sometimes.  I would not give up a moment of it.  I want it to go on for years to come.  We have been married forty-three and a half years.  I plan on at least celebrating fifty years of marriage with her.

Those of us who are caring full time for a spouse with a chronic disease, to be able to function effectively day after day, have to distance ourselves from some of the harsh realities.  On occasion we also need to catch a glimpse of those realities, so that we can gain perspective on the value of the time we have with the one we love. Tonight I caught that glimpse.  I am celebrating the time we have 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.

 

« Previous Page — Next Page »