August 18, 2009

Ups and Downs plus Ordination Anniversary

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

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

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

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

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

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

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

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

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

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

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

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

 

August 11, 2009

Problems in Common — It Helps to Know.

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It was just an off hand complaint when someone in our online group was venting. To paraphrase: She puts the toilet paper anywhere but in the toilet.

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

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

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

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

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

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

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

 

August 10, 2009

Some Days are Frustrating

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It seems so unfair to complain about frustrations with someone who is suffering from such a terrible cluster of diseases, Parkinson’s Disease, Parkinson’s Disease Dementia, and heart disease on top of all that.  My aches and pains and various annoyances are tiny by comparison to Mary Ann’s challenges.

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

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

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

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

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

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

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

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

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

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

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

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

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

 

August 7, 2009

Restless Night

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

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

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

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

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

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

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

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

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

 

July 26, 2009

Are we being too cautious?

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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!

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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 12, 2009

Changes: She is Unaware of Them

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It is becoming more likely each day that this decline is not temporary but permanent.  Increased Midodrine to raise her blood pressure and move us across the margin from fainting regularly back to fainting occasionally has not yet accomplished its task.  We began the change in dosage yesterday noon.   The medication may work better as the days go by but it has a very short half life, so it should have worked by now.  We will see.

What is interesting to me is that when I referred to the change in our circumstances earlier today, Mary Ann seemed puzzled by what I was saying.  I realized that from her perspective little has changed. 

Mary Ann has no awareness that the fainting is approaching before it happens nor does she have any awareness after she comes around that it has happened.  I have asked her more than once if she realized that the last thing she remembered was standing up, and now she is on the floor or in her chair.  She hasn’t always believed that she sometimes fainted — still has her doubts.

It is a good thing that she is not distressed by what happens.  The number of times she faints in a day does not seem to impact her in any way unless she has hurt herself during one of them.  As I have mentioned in the last couple of posts, she does often get very tired, maybe sort of tune out, and then nap, but napping doesn’t seem to register as a consequence of fainting. 

Her perception of the situation seems not to have changed while my perception has changed.  It is, of course, more than just a perceived change.  As the Caregiver, I am the one who holds her up in the chair or on the toilet stool or on the commode when she faints there.  I am the one who lets her down to the floor and/or picks her up when she falls from a standing position to the floor.  I am the one who marks time while she is napping two or three hours, watching her on the monitor so that I will be there when she begins to move.  When she awakens, she is just surprised at how late in the day it is. 

We have views of her reality that are 180 degrees apart.  She is looking from the inside of her circumstances out.  I am looking at her situation from the outside.  She seems far less distressed by very many of the problems she encounters than I am.  She is the one with the physical and mental limitations, but she reacts with equanimity.  I do not have the those same limitations, but I feel more strongly the frustrations of the roller coaster ride we are on.  I see what she can’t see in regard to what we are going through as a household. 

The role of a Caregiver is to create an environment for his/her Loved One that is comfortable and secure so that the Loved One experiences life as fully and completely as circumstances will allow.  By making sure there is food whenever wanted or needed, clean clothing to put on and help putting it on, personal tasks accomplished, a little variety and social contact, the Caregiver provides a sort of cocoon of comfort in an otherwise impossible situation.

While this Caregiver does lots of whining and complaining, for the most part, there is little awareness of just how much goes into creating that cocoon of comfort and security.  The declines are sometimes masked by the Caregiver adapting to the changes in a way that minimizes the impact on the one declining. 

She is pretty much unaware of the decline she is in.  That seems to me to be a good thing.  She is not experiencing pain and distress and fear triggered by the recent changes.  Her world is still in place — almost no changes from her perspective. 

Deck Therapy Addendum:  I was sitting on the deck just before 9pm toninght and out of the corner of my eye, there came mom and young’ns coming on the sidewalk and heading under the deck five feet from where I was sitting.  In fact I got up and watched from the deck just above as the last one squeezed through the lattice.  I scolded them and they came out right under my nose and left the way they came.  I sat again, was in and out of the house a couple of times, then sat out there again.  As I was sitting, there between the posts by the gate off the deck was a little face sticking its nose through looking at me, checking to see if I was still there.  That time I got the hose and squirted under the deck from the other side.  I couldn’t see if and when they left, but they weren’t visible for the next half hour that I sat out there.  They are bold as brass.  I brought into the house (as I did last night) the feeders they rob.  I can’t afford to keep up with the quantity they consume.

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 6, 2009

Caregiver: Reminded Why I Retired!

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The phone started ringing early (for us) on the Fourth of July.  The first call was from the Funeral Director to obtain the new Pastor’s phone number.  The second call was from the new Pastor on a much needed vacation with his family from whom he has been separated most of the time for the last five months.  He asked me if I would do the funeral.  Since I served the congregation for over twelve years until I retired almost exactly a year ago, I know the family well.  I agreed to do the service.

I have now been reminded how difficult it had come to be just to do the basics of the ministry before I retired.  Even with the Volunteers who have been so willing to stay with Mary Ann, scheduling appointments and meeting times on short notice is beyond complex.  

Just the phone calls are sometimes difficult to handle since Mary Ann’s need for help often comes with little warning, no matter what I am engaged in.  Completing a phone call, especially a long one, is sometimes virtually impossible due to a fall or a bathroom need. 

This family includes one of those who has Volunteered with Mary Ann in the past, so she suggested that the first planning meeting be at our house.   That eliminated the need for trying to get a Volunteer on the Fourth of July weekend with less than 24 hours notice.   The meeting was scheduled for 2pm.  The morning routine started fairly late in the morning.  The morning fainting spells began and a long nap meant that getting Mary Ann dressed came early in the afternoon.  I needed to make a meal.  The ingredients for a Quiche were in the house and ready to go. 

I started during her nap and moved sort of methodically completing each step before going on to the next.  I knew if I had hot pans cooking bacon and preheating oven and sauteeing onions and egg mixture and softening cream cheese all going at once, along with Mary Ann’s multiple requests, all needing to be done before the family arrived, the stress on this inexperienced and unskilled cook would be explosive.  The timing worked out so that the Quiche would not be done before they came.  Mary Ann needed something else to eat since she had not had anything to eat since pill time about an hour before the nap began.  I tried to postpone the meeting but could not get through to them. 

I managed to get my clothes changed for the meeting, the Quiche in the oven and scrambled eggs made from the leftover egg mixture, onions, bacon and cheese for Mary Ann to eat. 

When the family came, we met on the back deck while Mary Ann was eating and the Quiche was cooking.  I left the meeting periodically to check on Mary Ann, adjust the oven temperature, and take the Quiche out of the oven.

Understand, the meeting was with parents who had just lost their adult son.  One of their daughters, his sister, was with us.  Ministering to people in such painful circumstances demands full attention.  People deserve that kind attention when they are in such powerful grief.  The Son who died had lost a daughter at two and a half years of age many years ago.  The pain of losing that Granddaughter was still fresh after all the years.  Mom had lost her mother when she was just a little girl.  Those feelings remain intense. 

It is important to be there for people in times of such grief, in this case in multiple layers, listening intently and responding in ways that validate the pain and help provide a framework with which to handle it.  It is hard to do that while running back and forth to deal with another center of focus equally complex. 

Today reminded me why I made the decision to retire.  Doing a responsible job serving the people of the Congregation and being there for Mary Ann at a time of such need simply had moved beyond the limits of my ability. 

This week will include another very substantial meeting with the family to process feelings and gain information for the message at the funeral.  There is already a Volunteer scheduled at a time that was workable for the family.  There will be a number of hours after Mary Ann is in bed writing that message.  I have just completed the plan for how the service will be done, putting the pieces together so that a service folder can be prepared. 

For the funeral itself, Volunteers are simply not available (at least not so far) since some will be attending the funeral.  Mary Ann may be able to attend, but will need someone to help her during the time I am attending to the service and its preparations.  If she attends the service, that Volunteer is in place.  If she cannot go, I will need to arrange a paid agency person to serve as backup.  That may or may not work out. 

On Sunday afternoon I will be conducting the Ordination Service for a young man who has completed training and internship and will begin serving a congregation in Iowa the following week.  The plans for a companion for Mary Ann and an agency backup are now in place. 

The convergence of work needs and Caregiving needs is something that some who read this blog are experiencing.   To you I say, if you think what you are doing is impossible, you are right.  You are doing it and will continue to do it.  As I look back, I have no idea how I survived.  Those of you who are working full or part time and Caregiving also have no answer to give when someone who knows what you are doing asks, “How do you do it?”

I am being reminded this week why I retired.  I am grateful that I could, and glad that I did.  Mary Ann and I need every hour of every day just to deal with what the Parkinson’s and Parkinson’s Disease Dementia.  We are full time care partners.  It is what we are called to do. 

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: , , , , , , , , , , , , , , , , , , |
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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.

 

June 21, 2009

Caregiver’s Moment of Melancholy

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

 

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