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: , , , , , , , , , , , , , , , , , , , , , |
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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 24, 2009

Caregiver’s Plans for Deck Therapy!

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength | Tags: , , , , , , , , , , , , , , , , |
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As they swung the pickaxe and wielded shovels trying to dig through the huge roots of a Bald Cypress Tree and the rock hard Kansas clay just below the roots, the heat index reached 111 degrees yesterday.  Three young men sweated and strained, pulling up water soaked sod to get to the roots and the clay. 

In this heat and at my age, it seems much better to watch others work than to join in the digging.  Today the work continued with more digging, with the addition of the job of bringing huge rocks from the truck in the street in front of the house to the back where they now lay until they find their way to their permanent place in what will be a waterfall, a pondless waterfall.  

They had a little walk-behind Bobcat to move the rocks, but the rocks had to be loaded into the bucket and carried from it.  The well is dug, the liner laid out.  Tomorrow the pump will be installed, the filter filled, the rocks arranged, and later, maybe the next day, the native plants put in place. 

There will then be a waterfall flowing into a manmade wetland to provide an aesthetically pleasing solution (hopefully) to an ugly problem with standing water fed by regularly cycling sump pumps of three houses, ours being the middle one.   

We have committed substantial personal resources to this project.  I cannot be sure that the days and weeks and months will confirm it, but my expectation is that the setting on our deck become more of a sanctuary than it already is. 

This little place where we live is our world most of the time.  We are not completely homebound, but we spend the vast majority of our days here.  To put it bluntly, my goal is to keep from going crazy.  I will do Mary Ann no good if I lose my bearings.  The spiritual grounding that provides me with stability is the primary source of equilibrium.  That grounding needs to be sustained.  We have been through enough to confirm that I am not invincible.  It would be stupid of me to think so.  No human is. 

I recognize the need to have times of respite to help keep balanced and maintain the ability to care for Mary Ann’s needs in a way that nurtures her as a whole, complex, vibrant somebody who happens to have Parkinson’s.  I need the respite to be husband rather than a grumpy and reluctant care provider.  

Mary Ann and I are more grateful than we can ever say for the Volunteers and Mary who schedules them.  We recognize Mary to be a very special gift from God to our household.  The Volunteers give both of us time away from each other.  That time away makes our time together better. 

Tonight, Mary Ann enjoyed the company of good friend Barb.  While Barb was with Mary Ann, I ran some errands and spent time in my favorite close by place of respite.  There I encountered the doe that has been there the last few times.  The two wild turkeys returned to feed for a bit.  The view was as good as ever.  The humidity in the air created layers of mist with varying density, giving depth to the plains that extended for miles in front of me.  I encountered a nice young man there, watering some new plantings.  He is the realtor, excited about the open house coming this weekend, an open  house with the purpose of seeking folks to buy the twenty-eight lots that will be filled with homes, thereby eliminating that place of respite. 

For me to be a good care partner to Mary Ann, there need to be accessible places of retreat and respite, places I can be while we are at home together and there is no Volunteer available.  My office with the computer and the worship center is a place of respite.  The A-V monitor allows me to be here while Mary Ann is in bed or in her transfer chair in the living room. 

The deck can be such a respite with a little planning.  It is possible to plug  the monitor into an outlet on the deck.  My hope is that the addition of the waterfall will increase the power of that setting in providing renewal and refreshment.  Without the need to have a Volunteer scheduled so that I can drive to some other place for respite, our little corner of the world can provide more of what is needed to keep our system healthy and functional. 

Meaningful Caregiving will not happen by accident.  Sometimes it takes pickaxes and shovels wielded in 111 degree heat index weather to help create what is needed to nurture the spirit and sustain mental stability so that meaning can be found day after day in the tasks of caring for someone loved deeply. 

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.

 

June 10, 2009

Who Makes Daily Decisions and How?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , |
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Should we go to the Neighborhood Brunch or shouldn’t we?  It took at least three days to get the decision made.  The way I finally figured out whether Mary Ann wanted to go or at least was willing to go, was by jumping up to help her when she got up from her chair and headed out to the kitchen.  She was looking for the recipe for the Blueberry French Toast that has always been a hit at the Brunch and wherever else we have taken it.  She finally signaled her wishes by her actions.  it was 5pm in the afternoon of the day before the Brunch.  We had only a few of the necessary ingredients in the house.

Getting decisions made is an unbelievably difficult challenge in our household.  We have regularly played the “What do you want to do?” game.  We almost always played that game when it was time to go out to eat. It is a miracle that we ever actually got to a restaurant and ate.  The process of deciding where to eat always went the same way unless some external circumstances led both of us to the same idea immediately.  If it was time to eat and we happened to be near Bobo’s Diner, the decision was easy – still is.  The vast majority of times it went this way, I began listing every restaurant that I could think of until I named one that brought to Mary Ann’s mind a particular menu item for which she was in the mood. Sometimes that went on so long I started heading home out of frustration.

Some things have changed as the disease process has taken its toll on Mary Ann.  The Parkinson’s has softened her voice and slowed the mental process, making it difficult to respond to questions.  The Parkinson’s Disease Dementia (a Dementia with Lewy Bodies) has stolen even more decision-making ability.  Sometimes it is almost impossible for Mary Ann to get hold of what she is thinking.

Imagine trying to play the “What do you want to do?” game when the person being asked that question has absolutely no answer, no idea how to answer.  Please understand, that does not mean there has been any change in the wanting of certain things.   It is just next to impossible for them to locate that want, name it, and get the words out of their mouth.

As with most of us who are doing full time caregiving, much of the time I can read Mary Ann like a book.  I may very well have enabled her lack of responsiveness by figuring out what she wants without her having to say anything out loud.  We have been at this relationship for well over four decades.  I can usually figure out what she wants by analyzing the circumstances at a given moment and remembering what she has wanted a thousand other times in those circumstances.

Making a decision on anything other than routine matters where circumstances can easily be read is often a protracted and painful process.  I asked about the Neighborhood Brunch occasionally for a couple of weeks.  There was no reply, nor were there any non-verbals that gave a clue as to her wishes.

I suppose the question could be asked of me, why bother to include Mary Ann in the choosing.  Why not just make the decision and go with it.  For one thing, that is not how I function. Ask those poor folks who worked with me in a Team Ministry.  Being inclusive of everyone in the process of making a decision at work often makes for a better decsion and more likelihood that all the participants will be on board when it comes time to act on the decision.  On the other side of it, I know there were times when we processed things too long and everyone wished as the Senior Pastor, I would just make the decision so that everyone could get on with doing what we were talking about.  As I often admitted, I just wanted to work it out so that I wouldn’t get the blame if the decision turned out to be flawed.

Why include Mary Ann in the decision-making?  She deserves to have something to say about her own life.  Because of the Parkinson’s and the cluster of additional health issues, she has had stolen from her any shred of control of her own life.  She has always been strong-willed, so running roughshod over her wishes would not work.  She would figure out a way to stand up for herself, even if she might take a passive-aggressive approach.

I work very hard at trying to give her the chance to decide what we will do.  I usually try to guess what she wants and then frame the question about what to do by saying “would you like to [insert what I have guessed she wants to do].”  I often have to follow it with “just say yes or no?”

As the Satuday of the Brunch got closer, I became more specific about the options.  If we went to the Brunch it would mean having the hassle of making the Blueberry French Toast, but then we would have the valuable social interaction.  I probably said it in a way that would have revealed to the attentive that I was not much interested in the task of making the BFT.  For the last two days before, I tried the “do you want to go, yes or no?” approach a number of times.  There was no response, nor where there any non-verbals I could read.

By Friday afternoon, I was specific that if we were going to go, we would need to go to the store soon.  The recipe demands that the BFT sit overnight before baking.  Still there was no response.  I don’t remember how long after that attempt at getting a response she got up with that restlessness that indicates there is something she intends to do other than the usual.  It only took me seconds to put two and two together.  She was looking for the recipe.  We were going.

I have to admit that there is a part of me that resents that she had not given any indication sooner and that her decision meant I would need to get us to the store, come home, make the Blueberry French Toast while trying to include Mary Ann in the process of making it (harder than doing it myself).  I dreaded the fact that I would need to get up at least two hours earlier than usual to get myself cleaned up, get the dish out of the fridge to stand for thirty minutes, cook it covered for thirty minutes, uncovered for another thirty minutes, make the blueberry sauce that needed to be cooked just the right length so that it could be poured over the casserole just before serving it.  During that same time Mary Ann needed to be aroused, dressed and fed so that we could make it to the Brunch on time.

When all was said and done, the Brunch went well, the Blueberry French Toast was a hit (the huge pan came home completely empty) and we enjoyed the morning.

Making decisions is terribly difficult to do, but Mary Ann deserves to be a part of them.  As frustrating as the process can be, it is important that Caregivers and Care-receivers make decisions 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.

Added bonus:
BLUEBERRY FRENCH TOAST

12 slices white bread
2 8oz. cream cheese
l c blueberries / 12 eggs /2 c. milk
1/3 c. maple syrup

Sauce: l c. sugar l c. water
2 T cornstarch l c. blueberries
l T butter

Cut bread into l inch pieces. PLACE 1/2 in buttered 13 x 9 baking dish. Cut cream cheese into l inch cubes. Place over bread. Top with berries and rest of bread. Beat eggs. Add milk and syrup. Pour over bread mixture and chill overnight. Remove from fridge 30 minutes before baking. Cover and bake at 350 for 30 minutes.. UNCOVER and
bake for 30 minutes or until set.
SAUCE: in a saucepan combine sugar, butter, and cornstarch add water. BOIL for 3 minutes over med. heat stirring constantly. STIR IN BERRIES and reduce heat. Simmer for 8-10 minutes. Pour over French toast before serving

Mary Ann Tremain
Faith Lutheran Cookbook 6/25/02

 

June 8, 2009

Caregivers Need to Vent Frustrations.

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength | Tags: , , , , , , , , , , , , , , , , , , , , , , , |
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Mary Ann and I have now had our fifteen minutes of fame.  The article on our situation, with picture and all, was published  in our local paper yesterday morning.  The fame has already faded.  Oh well.  Who wants to be plagued by the paparazzi anyway. 

At various times during the day today, I stopped by the computer to read  posts on the spouses of those with Lewy Body Dementia online support group.  Since there is an expectation of confidentiality in that group, I will use no names. 

One member of the group wrote a very graphic and painful post, venting a level of frustration she feared would shock all of us.  She revealed a depth of pain that is almost beyond description.  What drove her to write was not just a passing moment of feeling sorry for herself.  It is hard to imagine anyone going through the impossible dynamics of her circumstances and surviving. 

What is more frightening is that no one was shocked at her shocking vent.  They understood.  She just put into words feelings that many in the group experience.  What is frightening about it is that it revealed just how much pain there is out there.  What is frightening about it is that those of us who are not yet experiencing the later stages of the dementia in our spouses have that level of pain to look forward to. 

One of my first thoughts was thanksgiving that Mary Ann has a comparatively mild level of dementia at this point in its progression.  We have a quality of life that would be the envy of many who are immersed in the worst of the dementia.  We can get out to eat — maybe a little messiness, but the job gets done.  Mary Ann’s memory is still better than mine.  That is pretty scary!   Since she is lighter than I am; I can still provide the physical help needed to get basic needs met.  Our communication is limited, but it still happens.  We can travel, with some difficulty, but we can do it.  Mary Ann’s needs are still within the range of our friends who volunteer to spend time with her while I do other things.  Most nights she sleeps reasonably well. 

As I have revealed in some of these posts, we have frustrating challenges that push us to the limit.  We live in a narrow margin of functionality.  We are one fall away from the end of being able to manage here at home.  Any compromise to my health could destroy our system here with one another.  None of the other options out there is acceptable to either of us.  One or the other of them might become necessary, but they are still not acceptable. 

While the difficulty of our situation does not measure up to so many others’ situations, venting frustrations is still a necessary safety valve.  Those of us to do the caregiving and those who receive it need to release some pressure once in a while to stay sane! 

I am convinced that it is healthier to name the pain we are in once in a while, to admit to ourselves and whomever we trust enough to do so, that we just can’t handle it any more.  It is far healthier to vent than it is to try somehow to sustain the illusion that we are fine when we are not always fine.  We may want everyone to think we are noble, self-giving, saints who just love caring for our Loved One every moment of every day.   The price we will pay for maintaining that fiction will at some point be a psychic meltdown — probably a physical one too. 

The challenge is to find ways to vent our frustrations without hurting ourselves or anyone else.  One of the best ways seems to me to be just what the person in our online group did when she wrote out all those thoughts that seemed to her to be so horrible.   Another way to vent effectively would be to have a trusted friend or cluster of friends who can listen to some ranting and raving without getting upset with you, or worse yet, telling you that it isn’t as bad as you think. 

Some work out their frustrations in other ways.  The occasional, “oh fiddlesticks” or “gee willikers” spoken with great gusto can release a little tension.  Just make sure that the grandchildren are not within earshot.   One of my vents of choice is to string together a long, loud and involved rational explanation as to why what just happened should not have happened.  My kids just loved those lectures.  They would often say, “Dad, can we hear that lecture again, it would be so good for us.”

I have said this in former posts.  Taking the time to process what we are going through and writing about it in this blog has provided a surprisingly powerful mechanism for working out my frustrations.  Maybe it is as simple as talking the frustrations to death.  (And  you wonder why my posts are so long.)

There is a piece of reality that frees me to take off the rose-colored glasses, look past any illusions about my goodness, or strength of character, and expose the nastiness in me, the ugly character flaws.  I understand the One who made me to love me so powerfully that my nastiness, character flaws, even my doubts and anger are not strong enough to ward it off.  I can vent to my heart’s content and remain safe and secure, able to get on with life in a meaningful way after the safety valve has released some pressure. 

For those of you who do not share my understanding of reality, the same is so.  Setting aside the pretense and the illusions and facing down the harsh realities of who and what we are, provides us with a sort of reality therapy that allows us to get through the worst times and come out able to live meaningfully in the face of terrible circumstances. 

Caregivers need to vent frustrations.  Just don’t hurt yourself or anyone else when you do the venting!

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 6, 2009

Caregivers, Why Bother to Plan Anything?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , |
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She suggested it!  “Let’s go to Braum’s for ice cream.”  Understand, the closest Braum’s is in Emporia, Kansas, an hour’s drive on the Interstate.  We usually take more scenic roads resulting in closer to an hour and a half drive time. 

Noble husband that I am, I will make the sacrifice, drive us to Braum’s, and out of the goodness of my heart join her in eating a two scoop Hot Fudge Sundae topped with salted pecans, real whipped cream and a cherry on top.  Sometimes I surprise myself with my generosity. 

Here is the rub.  When Mary Ann suggested going, it was too late in the day and storms were coming.  Thinking through that sort of information and making a decision demands using what is referred to as the Executive Function of the brain.  The mild Parkinson’ s Disease Dementia that has recently been added to the Parkinson’s Disease has dimished that particular function. 

The plan then was to go the next day.   As the next day progressed a combination of intestinal activity and fainting (Orthostatic Hypotension) flipped the nap switch in her.  I say it that way because the fainting spells sometimes drain from her the capacity to be up and about.  When the nap switch flips, it is sometimes a challenge to get her to the bed and settled there.  She may crumple to the floor wherever she is when the need for a nap hits. 

The next day included an evening activity, the Parkinson’s Support Group.  There was no moving fast enough to get the trip in before the meeting.  The day after that (yesterday) we planned to go again.  The day was completely clear other than the outing to Braum’s.  The weather was spectacular.   It didn’t happen.  It was a nap that filled the time we were going to use to make the trip.  This time it was not that the nap switch flipped, but it was the need that comes more and more often. 

Parkinson’s Disease Dementia is a Dementia with Lewy Bodies.  It patterns itself differently than Alzheimer’s Dementia.  There is a different part of the brain affected.  One of the symptoms of the progression of the disease is daytime sleeping.  Some days there have been two naps.  The usual length of a nap is two to two and a half hours.  We never know when the need will arise.

Yesterday there was no trip to Braum’s.  Today, I was determined it would happen.  I planned to add another stop along the way.  I thought phoning a friend of Mary Ann’s to come along would make the trip more enjoyable.  Jeanne and Mary Ann enjoy each other, she helps when Mary Ann needs to use a public bathroom, and since Mary Ann is barely verbal, Jeanne adds to the conversation when we travel.   She was not able to join us for the trip, but I was still determined to go. 

Again, the day was beautiful.   We ate some lunch at home.  I made some surprisingly tasty chicken salad.  Those who have read many of the posts on this blog appreciate what a remarkable accomplishment it is when I make a meal, especially one that is fit for human consumption. 

Almost immediately following lunch, the nap need arose.  By the time Mary Ann awoke, the trip to Braum’s was again out of the question.

Why bother to plan anything?

I am a planner.  I get in my mind how the day will go, what needs to be done, and varying from that plan upsets my equilibrium.  The role of full time Caregiver has resulted in the dismantling  of my daily structure. 

Caregivers respond, they do not work a predetermined plan.  Mary Ann’s needs come when they come.  She cannot fill them herself.  That is my job.   The challenge is trying to figure out how to keep from going crazy since as a Caregiver, I have very little to say about what I will be doing and when I will be doing it. 

For eighteen years of my almost forty years in ministry before I retired, I worked with Youth.  The first three years in the ministry I taught religion classes and served as a Pastoral Counselor at a large parochial high school of some 900 students.  For the next fifteen years, working with Youth in a congregation was a major part of my portfolio.  When leading Youth activities and classes and retreats, I learned quickly that there needed to be a detailed plan in place but along with that plan a willingness to throw the plan out completely if circumstances demanded it.   

That is exactly the sort of planning needed to be the primary Caregiver for someone who needs help with most everything they do — without the Caregiver going crazy.  My goal from the day I retired has been to have options immediately available so that if Mary Ann’s needs eliminated whatever we had planned, something else could be substituted. 

What that means most of the time is that I need lots of small tasks that can be done here at the house while Mary Ann is napping, or interested in a televsion program.  The hardest part of adapting to this new pattern has been gaining the ability to let go of plans I have in my mind without becoming resentful and grumpy.  In that regard, I am still a work in progress. 

Today, when Mary Ann woke up, instead of heading for Braum’s an hour away, we went to the Baskin and Robbins on the other side of town, drove by the beautiful Ensley Gardens and came home.  A Hot Fudge Sundae made with Nutty Coconut ice cream with chopped nuts, whipped cream and a cherry on top goes a long way in calming the ruffled feathers of a planner whose plans have just been frustrated. 

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.

 

May 27, 2009

Can Caregivers still Laugh?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Relationship Issues, Sources of Strength | Tags: , , , , , , , , , , , , , , , |
1 Comment 

I can’t remember the last time I laughed like that.  I just couldn’t control it.  My stomach hurt I was laughing so hard.  Yes, it was at Mary Ann’s expense, but I just couldn’t stop, and she finally started laughing too.

Yesterday, I started adjusting the sheet and bedspread on her bed while she was standing next to me.  Her question was almost matter-of-fact.  Did I find the squirrel foot?

She has had hallucinations often in recent months.  There have been rats and mice in her bed.  Some have bitten her.  She has seen the Thursday people, the man and woman and their two children.  In the past she has seen a cat, other people, a bird sitting on the window, strings and threads almost constantly.  She has tried to pick up things from the carpet, things that were not there.  She has seen bugs in her food and other bits and pieces of foreign matter.

“Did you find the squirrel foot?”  The question didn’t just tickle it, it set it off my funny bone like the fuse on a fire cracker.  I burst into laughter.  At first, Mary Ann did not at all think it was funny.  After a while, she started laughing at me laughing.  Then, even though the hallucination had been real for her, probably the night before, finally, she was laughing together with me at the thought of there being a squirrel foot in the bed.

It was good to laugh.  It was good for both of us.  It is interesting that a sort of relaxed warmth and affection seemed to surface after our bout of laughter.  I really don’t remember the last time we laughed like that.  Laughter doesn’t come so easily these days.

I don’t know if it is just me, or if it is common to other Caregivers.  My sense of humor seems not to be working so well any more.  I have often taken myself too seriously, but I have also enjoyed kidding around with folks.  Since I am, as they say, vertically challenged, I have endured a lot of smart-aleck comments.  My defense mechanism of choice has been to beat people to the punch and make a joke about my height before they had a chance to do it.

In earlier years, it was all great fun.  Now, I find myself moving too quickly to feeling put down or belittled when I am the object of what would have in the past seemed to be just good fun.

When someone is being light-hearted and silly, the weight of twenty-two years of battling Parkinson’s,  the daily struggles that come with that battle, sometimes steal from me the capacity to just let go and laugh.

Often when ministering to someone who had lost a loved one a couple of weeks earlier, I would observe out loud to them how hard it is to deal with people around them just going on with their normal lives, conversing with one another about trivial things as if nothing had happened, while their world was in a shambles.

Full time Caregivers who are completely immersed in the task sometimes find it hard to let go of the struggle and relax, have fun, be silly.  The Caregiving task seems to expand and fill every corner of their world, leaving little room for the trivial.

It is easy to turn into a Grump.  I have come to do grumpy pretty well.  Even so, we have our moments.  Sometimes muscles that seem to have atrophied, the silly muscles, are revived by something unexpected.   At the risk of being indelicate, we have waged war on constipation for decades.  When there is some especially normal and plentiful activity (if you catch my drift), I can’t help but celebrate with a hearty “Good Job!!!”   I laugh, even if Mary Ann doesn’t.  Who would have thought such a thing could bring such joy.  Dr. Oz would be proud!  (By the way, the first person who reveals to my lovely wife that I mentioned this in my blog, will wake up the next morning with a squirrel foot in his/her bed.)

Gratefully, twenty-two years of Parkinson’s and a couple of years of mild and periodic dementia have still not stolen Mary Ann’s wicked sense of humor.  She has a knack for surprising people with an often softly spoken zinger.

I am not really sure why, but recently, the load has seemed a little lighter, even though there has not really been any change in its contents.  It seems a little easier to relax and be sort of normal, at least our version of normal.

Maybe there is still hope for the return of a sense of humor that has seemed to wander off.  Who would have thought that the search for a squirrel foot in Mary Ann’s bed could have such power!

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.

 

March 25, 2009

Caregivers/Receivers: What about Anger?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , |
[2] Comments 

Let me begin by telling you that I am not feeling angry at the moment.  This is not a chance for me to vent about my frustrations.  What I want to do is say what is obvious to those of us in Caregiving roles — as well as those receiving the care.  We get angry!

When we get angry we have to figure out what to do with those angry feelings.  While I would like it to be so, I am not always calm and rational and thoughtful and caring and sweet and loving — I had better stop before I lose my supper.  Mary Ann and I are not always sweet to each other.  Gratefully, neither of us expresses our anger physically.   We don’t call each other nasty names.   We do get angry. 

We have to figure out what to do with the anger so that it does not alienate us from one another or eat holes in our insides.  We don’t happen to be sweet talkers.  I appreciate those for whom sweet words come easily — when those words are genuine.  We are not cutesy-pie or sweet-cheeks or honey bunny sort of folks.  We didn’t use baby talk with our children — maybe a little with our Grandchildren, but that’s different!  We don’t use sweet talk with one another. 

Actually, I like that we say what we want to say to each other with words that sound genuine.  There is a trust that emerges that we are being straight with each other.  We try to be thoughtful in what we say without using words that sound like empty flattery.  We can both be pretty grumpy.  That is just the way we really are, sometimes grumpy, sometimes loving and kind and happy and content. 

When anger comes there are some elements of dealing with that anger that are unique to a caregiving and receiving relationship.  It just isn’t fair to express anger at someone who is sick, who has been battling Parkinson’s Disease for twenty-two years, who has had stolen from her every ability that brought her creative satisfaction, someone who depends on you for almost everything.   But where then can it go?  How can it be expressed.

Then, how can Mary Ann express her anger at me when moments later she has to depend on me to get her a sip of water or more importantly a dish of ice cream?  How can she risk alienating the one person who is there for her pretty much twenty-four hours a day?  Where then can the anger go, how can it be expressed.

If you haven’t discovered this for yourself, let me tell you something important about long and committed relationships.  They contain within them the capacity to be angry with one another, be grumpy, express it, and not threaten the relationship.   We trust each other enough to admit and express our anger. 

There are, of course, some rules.  No hitting!!! No name calling.  No damage to the furniture, doors or walls.  There may be an enthusiastic shutting of a door.  There may even be some yelling.  My children and those I taught in Confirmation Classes can testify that this little body can produce sounds audible from quite a distance, startling when heard at close range.   

There is an element in the expression of anger in a relationship that is not always appreciated.  Expressing anger appropriately in a relationship can strengthen it.  The operative word is “appropriately.”  Admitting that you are angry about something creates a vulnerability.  I can remember in our early years of marriage, Mary Ann once  saying to me, “I just wish you would get angry with me.”  By the way, she has lived to regret ever saying that. 

In her own way, she was asking me to be honest with her and reveal myself more openly, be more fully present with her.  She was asking me to trust her with my anger, trust her with what lay in my insides. 

Here is where that insight relates to our relationship as Caregiver/Receiver.  Were I to refuse to let her see any of my anger, it would signal to her that I thought her to be too sick, to debilitated to handle an honest relationship.  If I were to be sweet and nice and never grumpy with her, she would suspect that I had somehow lost respect for her strength. 

If Mary Ann were to become docile and compliant, never grumpy, always appreciating whatever I said or did, eating leftovers without complaint, never becoming impatient with me, it would signal to me the loss of someone who has been a force to be reckoned with, a strong presence, the person I have loved for all these years. 

We are not just Caregiver and Carereceiver, we are husband and wife!

What helps in managing the anger that comes is reflecting on it long enough (after the first reactive moments) to determine what it is that is the actual cause of the anger.  More often than not, what we are actually angry at is the insidious nature of Parkinson’s.  The ups and downs, the unpredictability, the inability to make plans and keep them, the relentless direction of this rollercoaster ride, combine to create frustrations that bubble up when some evidence of Parkinson’s presence pops up (sometimes as suddenly as Jack does when the little door of the box opens). 

I seem to have little ability to change this pattern, and I am frustrated by that inability.  When Mary Ann falls, which can be multiple times in a day, I get angry and grumpy about whatever it is that put her in the position of falling.  When I reflect on those reactive feelings, it becomes apparent to me what is actually happening.  I am scared.  We have been to the emergency room with blood that refuses to coagulate.  I know that head injuries are what most often finally take folks with Parkinson’s.  I am upset that I didn’t anticipate it and figure out how to prevent it.  I am frustrated that the very same medications that keep her able to function throw her into dyskinetic movements that compromise her balance, that the disease process combined with side effects of meds can cause her blood pressure to lower resulting in fainting.  I am angry that she doesn’t think about all that and avoid situations that make falling likely.  I am angry that the disease has slowed the thinking process making that kind of rational behavior difficult to maintain.  I am angry that she has always had a stubborn streak that, while it is keeping her alive, it is at the same time driving me crazy.   And then she wonders why I am angry at her when she falls since she isn’t the one who chose the Parkinson’s and brought all the challenges into our lives.  She isn’t doing it on purpose.

What about anger?  Well, admit it, name it, express it in ways that hurt no one, then think about it.  Use the energy it produces to find ways to deal with the problems that trigger it.  Don’t waste the anger.  Use it constructively.   Don’t let the Parkinson’s, the chronic illness, rule your feelings, your personal and emotional well-being.   Respect each other enough to be open and honest, vulnerable to one another.     Allow the chronic illness to become only an objective part of the landscape in which you live and grow and love. 

Yes, I would like to hear what you do with your anger.  I would like to hear what tools you use to manage it, release it, diminish its power.

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.  Comments are appreciated.

 

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