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May 15, 2009

Caregivers Appreciate the Chance to Give Care!

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , , |
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Maria’s George died this evening.  Others are not far behind.  It is such a privilege to read the posts of those in the last days and hours of life with their Loved Ones.  The Lewy Body Dementia Spouses’ group is candid about what they are going through whatever it may be at any given time.  It is a help to the rest of us to hear straight talk with all the details from others at different places in the journey with Lewy Body Dementia.

Each death that is recounted brings lots of responses from others.  There are many celebrations that the battle is over and the Loved One is finally at peace. There is relief that the Caregiver Spouse is also free from the clutches of the Dementia.  There are from the same people words revealing a deep sadness that the time of Caregiving is over.  One spouse giving care during those last days and hours wished she could just keep ministering to her husband without ever having to give him up.

As that fond wish to continue to care resonated in my thinking, I realized just how true some words were that were spoken by a friend when I retired.  He has retired and cares for his wife who has had ALS for many years.  He observed what an honor it is to be able to become a full time Caregiver.

As so many in the online group have died in the past months with more moving into their end times, I recognize just what a privilege and honor it is to have time with Mary Ann.

We spent a good portion of the day driving in the car.  We headed out to pick up a friend and then drove to the studio of our favorite potter.  The studio is in a tiny Kansas town about an hour away.  We picked up a couple of pieces while we were there.  One was a chili bowl with a handle and high sides.  Our hope is that the high sides will keep the cheerios from sliding out of the bowl as Mary Ann chases them with the thick-handled spoon.  We left with his artisans a plastic plate we had purchased to make it easier for Mary Ann to push food on the fork or spoon without the food slipping off the edge of the plate.  Our request is that he make a ceramic plate shaped like the plastic sample painted with glazes matching a couple of other pieces he has done.  There is no reason that we need to leave aesthetic considerations behind when we get adaptive devices to make Mary Ann’s life a little easier.

It is her birthday tomorrow.  The bowl will be her birthday gift — surprise, surprise! We have come to the age at which birthdays diminish dramatically in interest.  At least that is how I rationalize my lack of creativity in celebrating them.

We drove through an area of the Flint Hills.  The green of the spring grass, recently watered by rain showers, glistening in the sun was breathtaking.  Birds were flying, cattle grazing, van passengers soaking it all in.

As I think about those who have lost the ones for whom they have been caring, i realize more vividly than ever just how great it is to have this time.  When I am mid-task, doing something I don’t particularly enjoy, irritated at Mary Ann because she seems to be fighting against the very thing I am doing to help, it is easy to weary of it all and wish it was over.  I am grateful that it is not over.  I am grateful that we can sit at Panera’s and have a Bear Claw and a cup of coffee.

We have had a couple of tough nights in the last week or so.  Those are the nights when she is restless, needing some sort of assistance two or three times during every hour of the night.  It is not so much the tiring night that is the problem but the two days of increased hallucinations and confusion and long daytime naps that inevitably follow.  Tonight again, there was concern about the comings and goings of the Thursday people. We went through the skin Cancer removal, subsequent fall and repair of the wound, all in the last ten days or so.  Mary Ann has struggled more with spatial issues and dexterity resulting in her need for more help in getting food of the plate and into her mouth.

In this same last week we have had some very good days, eating out with some new friends, running errands, spending time at the library, having ice cream treats, going to see the Star Trek movie, enjoying a helpful Parkinson’s Support Group meeting, experiencing our own little meals on wheels program as  couple of great meals were brought over, a melt-in-your-mouth four layered chocolate cake with fluffy sweet white frosting covered with shredded coconut being delivered.

What I intuitively recognized in those thirteen seconds as we sat at McFarland’s restaurant September before last is absolutely true.  We needed time together while we have it.  As others spend their last days and hours concluding their journey together, it becomes crystal clear.  I have an honor, the honor of being Caregiver to Mary Ann.  I am grateful not to have missed the chance.

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 13, 2009

Caregiver: When Shall I Talk for Her?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , |
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Mary Ann barely talks, and I can’t seem to stop talking.  I have just written two posts titled “Who am I” chapters one and two.  When does Mary Ann get to say who she is?

There are different stages in the journey of a Caregiver and CareReceiver team.  Some are at a stage in which each can speak for him or herself.  Some are in the stage in which the CareReceiver can no longer speak at all.  We are somewhere in between those stages, a little closer to the latter than the former.

Mary Ann has never been very talkative.  She has been a very private person.  She was never one to spill her guts to others.  Mind you, when she spoke, it was always pretty direct. 

Now, it is very difficult for her to get thoughts into words.  It sometimes takes so long that she doesn’t get a chance to get those thoughts out before the conversation has moved to the next subject.  Sometimes she seems not to be able to follow the conversation.  Other times, her words when they do come reveal that she is tracking the conversation perfectly and just needs time to get a word in edgewise.  When she does speak it is often so softly that what she says is lost to the rest in the conversation. 

I want Mary Ann to be as fully present as she can be at all times.  I want her to have a chance to be heard, to be listened to.   I want people to discover who she is.  The challenge for me is determining when to speak for her and when to just shut up. 

More times than I can count, when people new to us have interacted with us they have looked at me and referred to Mary Ann in the third person.  “How is she doing?”  “Does she want this or that?”  When that happens, I usually move my body in a way that brings her into the conversation’s physical space, and I relay the question to her.  I don’t snap back with “Why don’t you ask her?”  Also, I don’t want to force the issue, since sometimes she is not able or does not want to respond.   What I do know is that if people refer to her in the third person when she is sitting right there, it feels as they have concluded that she is not actually there any more.  It is as if at that moment, were she to ask, “who am I,” the answer would be “Nobody!”  She is Somebody, somebody special.  I want people to know that. 

Another odd little quirk when folks do talk to her, is that some raise their voice as if she has a hearing problem.  On occasion someone will put his/her face right in front of hers and shout.  Some folks use a sort of baby talk, as if they were talking to a toddler.  The tone sometimes sounds as if it is an attempt to be sweet to her.  Without intending to do so, actually it seems to diminish her presence as a whole person worthy of adult respect — as if she is a poor handicapped little person in need of them descending to her level.  It is hard to watch and listen when she is approached in a way that seems to make her something less than she is.  I am not confrontational with people when they talk in a way that feels inappropriate, since they are doing their best to be kind.  I suspect that I need to be more assertive and find a way to help them understand that it would be better to talk with her the same way they would talk with any other adult. 

Again, one of my greatest challenges in the role of Caregiver/Husband is to determine when Mary Ann wants me to talk for her, and when she wants to talk for herself.   I try to deal with that challenge directly by asking her if she wants me to talk or not.   Sometimes she will answer me when I ask that question, but sometimes the words just won’t come. 

One of the times it is most difficult to be sure I am talking enough for her but not too much is at the doctor’s office.  The doctors generally handle this pretty well.  We have been going to most of them for a long time.  When they ask her a direct question, if she can, she tries to answer.  It is especially hard when her answer does not at all reflect what I think would be a more accurate response.  Sometimes I can jump into the conversation and address Mary Ann, reminding her of the specifics that would suggest her first answer not to reflect her actual experience. 

At the doctor’s office especially, when I do speak for her, I immediately ask her if what I just said reflects accurately what she understands to be so.  As a Caregiver, I have to be especially careful that I don’t project on to her my perceptions and feelings and conclusions. 

To be able to determine accurately when to speak for her and when not to, to be able when I do speak for her to reflect accurately what she is thinking and feeling, as a Caregiver, I need to listen very carefully to what she says about what is going on with her.  I need to to ask her questions such as, how does it feel to you when this or that happens, when I say or do one thing or another. 

All the listening skills I have tried to develop over the years of counseling are important skills to apply to communicating with Mary Ann.  I have to look for non-verbals, read lips, listen for code words that give a clue to what she is feeling.  Then I need to do everything in my power to elicit words from Mary Ann, especially those times she is most alert  and connected.  I need to be quiet long enough to give her a chance to form the thoughts and get them into words. 

When shall I talk for her?  When I have listened carefully to determine what she is thinking and feeling, when I have been quiet and patient long enough to allow her to speak if she is able and willing, then it is my job to bring her presence into whatever the conversation so that those with whom we are conversing recognize and affirm her identity as a whole person.  She is Somebody, somebody special!

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 11, 2009

Caregiver’s Identity: Who am I?

Posted by PeterT under Meaningful Caregiving, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , |
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Less than a year ago, I was Pastor Pete. Who am I now?

I liked being Pastor Pete.  In our tradition, as with most religious traditions, when a person is ordained into the ministry, it is for life.  I am still Pastor Pete.  There are a wealth of experiences folded into that identity.  I have been there when people have died, I have been there soon after people were born.  I have accompanied people through marriage problems, family crises.  I have ministered to people through a disaster, the Oklahoma City bombing.  I have done funerals for premature little ones the size of my hand.  I have done funerals for teenagers, young adults in their prime leaving children behind.  I have preached and done liturgies before hundreds.  I have gone through good times and painful times with congregations.  There is not enough space here to describe the variety of challenging and meaningful experiences that have shaped my identity as Pastor Pete.

That identity has not been my only identity, however.  Any who reads this post could list all sorts of identities they have had in their lifetime.  I have been a little boy, a son, a little brother, a kid whose identity was shaped by going to school, playing down at the swamp, jumping into piles of raked leaves, catching bugs, heading to the vacant lot for a game of Bounce or Fly, getting penicillin shots and taking those awful red penicillin pills, supposedly avoiding exertion on account of the Rheumatic Fever. That identity has come and gone.  I grew up and got well.

Then there was the identity as a singer.  That began when Mom claimed she heard me singing the melody of “We Three Kings” while I was lying in the crib at eight months of age after my brother had been practicing for singing at the Christmas Program that year.  I took voice lessons, sang in choirs, served as president and student conductor of five choirs from Junior High through graduating from college. I sang in a semi-professional choir earlier in my working years. That identity has come and gone.  I haven’t sung much for years.

I am a father.  We have two children.  There is an odd shift in identity that comes with children.  After children, I may have been Pastor Pete to some, Pete to others, but I became Dad to two, and Lisa and Micah’s Dad to many others.  It happens to most of us.  With children, our identity moves away from who we happen to be as an individual to who we are in relationship to someone else.  From the time the little ones head off for preschool and/or daycare, we become our children’s Dad or Mom.  Whenever we get full of ourselves in any other arena of life, coming home to children, going to school activities, getting them ready for bed or ready for school, feeding them, picking up after them, listening to their arguments with one another, dealing with behavior issues, serving in our role as parent will quickly burst our bubble and bring us back to reality. The role of parent has changed as our children have grown up, but I am still Dad and Mary Ann is still Mom.

There has been a new identity added to our reality in the last decade.  I am Grandpa.  Mary Ann is Grandma.  It is who we are now.  By the way, it is really cool!  That identity will stick with us from now on.

We all have multiple identities during our lifetime. While those identities all help shape us into the somebody we have become, some of them come and go.  Some of them stick.  The kid I was has come and gone but in some sense still lives in me.  My parents are both gone, but having been son to a Mom and a Dad still impacts how I think and feel.  I am still a little brother to four other people even though I am now sixty-six years old.  By the way, when those four are getting out of hand, I just observe that Mom and Dad kept trying until they got it right.  (You can imagine how far that gets me with them.)

Singing is still a part of who I am, even though I seldom do it.  It lives in my insides.  Music stimulates my soul and touches my heart.  I am a parent and take great comfort in the relationships with our two children.  I cherish my identity as Grandpa.

The identity as Pastor has molded and shaped my sense of self profoundly in the forty years of doing ministry.  While I am still by ordination a Pastor, I am not pastor to a congregation of people.  While being a pastor is part of who I am, my identity, it is no longer in a public setting.

There is an identity that became primary for me when Mary Ann and I married.  I am a husband, the husband of Mary Ann.  That identity has defined me for over forty-three years now.  Mary Ann and I have retained our individuality.  We have not disappeared into each other, but our lives are completely intertwined.

There is now a new identity born of necessity and grown into the center of who I am.  I am a Caregiver.  That identity cannot and should not be differentiated from my identity as husband. The Caregiving happens to be what being husband to Mary Ann includes at this time in our lives together.  When we commit to one another in marriage, it is not conditioned on health or wealth.  We marry a person, whatever that brings.  We don’t marry some ideal of what a husband or wife should be.  We marry a real person, who will grow and change with time and experience, as will we.  What comes, comes. I am now a husband and a Caregiver.

Who am I?  Am I what I do?  Am I a kid, a brother, a husband, a father, a Pastor, a Grandfather, a Caregiver, or am I something in addition to those things, something more than those things?  For me this is an exceedingly important matter. What sustains me is that I have an identity beyond what I do.

Let me say it plainly.  Mary Ann and I have no idea how long we will live.  No one does.  What if she dies before I do?  If my identity is solely husband and Caregiver, who will I be then?  Mary Ann has a very strong sense of herself.  She has a strong presence.  If I die before her, she will be Mary Ann.  She has never defined herself solely as a spouse.

My identity is rooted somewhere far beneath my various roles.  I am convinced that all of us need an identity that is not wrapped solely in one of the various roles we have had throughout our lifetime.  I am no longer a kid.  I don’t sing any more.  Our children are grown and on their own,  Our grandchildren do not live with us.  My brothers and sisters live six hundred miles from here.  I am no longer pastor of a congregation. If who I am is solely what I do, I am in a world of hurt.

For now, let me say this: The first answer to the question of who I am is, I am water and dirt.  I, like you, am made up of about 70 percent water and 30 percent dirt (carbon, minerals, etc.).  The final answer (as they say in The Millionaire) to the question who am I, lies in the answer to the question, Why am I a living, breathing, self-aware human somebody, rather than a fifty pound pile of dirt and a hundred and fifteen pound puddle of water?  My answer to that question will come in another post.  Stay tuned.

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 3, 2009

Caregivers/Receivers Need Rituals, Habits and Routines

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , |
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In an earlier post, I reflected on the value of some of the chores I do, cleaning the commode, making the beds, doing the little daily tasks.  They give me the feeling that I have a little bit of control in circumstances that are mostly out of my control.

I want to take the matter of routine farther in measuring its importance to the long term health of both Caregiver and Carereceiver.  I have not studied brain science enough to speak with authority on this, but there are some obvious elements of our complex brain activity that I would call “automatic pilot.”

When Mary Ann and I were dating, I would occasionally drive home from her house fairly late at night.  Maybe it was more than occasionally.  Maybe it was most times I saw her those summers together when I was not away at school.  Maybe it was more than fairly late — could have been very late.  I am the last of five children (there would have been seven, but two who would have been oldest died very early in their lives).  My parents were pretty mellow by the time I came along.  Yes, I was the baby in the family.  No I was not spoiled — maybe a little. My adolescent years did not include battles with my parents.  Open rebellion is not one of my gifts.

While my parents and I got along well, the late arrivals home from Mary Ann’s place set Dad off.  He was not pleased, to put it mildly.  Mary Ann and I just had a lot to talk about!  Since my parents had moved to a place in the country when Dad retired, it was a twenty mile trip home from Mary Ann’s folks’ place on a two lane blacktop.  There was an S curve that demanded slowing down to about 35 mph to negotiate safely.  On more than one occasion, I can remember coming to an awareness that I was past the S curve with no conscious memory of having slowed down and driven through it.  That is automatic pilot.

For me auto pilot is that part of my brain that functions without my need to consciously reason out what I am doing one step at a time.  That is where resides all the things I can do without thinking.

In my world, as small as it has come to be, there are rituals and habits and routines that not only order our day but help keep us safe and get things done that would seldom get done without the ritual.

There is a habit that I have developed to protect against Mary Ann trying to get out of the wheel chair or sit down in it while the brakes are off.  Doing so could easily result in injury as the chair rolled out from under her.  Whether it is the transfer chair or the wheel chair, any time I move it when it is empty, I leave the brakes on and just lift the back wheels, rolling it on the front wheels only.  The only time I take the brakes off is when she is seated securely in the chair.  The reason for such a ritual is that otherwise I would not remember each time to set the brakes before she gets in the chair.  The habit is a way to deal with my forgetfulness.

I line up the meds in a certain way (that Mary Ann developed) and follow a ritualized pattern to make sure that all the pills get in the right space.  I close the gate at the top of the stairs to the lower level whether Mary Ann is up and about or not, so that it won’t be open should she end up at the top of the stairs while dyskinetic or having an episode of fainting.

I have tried to reinforce habits in Mary Ann that help make my job easier and help keep her safe.  I have to admit I have been an abysmal failure at trying to build those routines and habits and rituals.  Her automatic pilot seems to have already reached capacity.  I seem unable to eliminate ones that are frustrating to me or seem unsafe, and I am equally incapable of adding new ones into her auto pilot that make my job easier or seem safer. Her automatic pilot developed long before the symptoms of Parkinson’s effected her mobility and dexterity and balance.  My hope has been to help create rituals and habits and routines that will help make life easier when the time comes that most of her actions will emerge from the auto pilot and few will be controlled by the Cerebral Cortex, the conscious, reasoning part of her brain.  There are some habits that seem to be developing but only a few.

I made a discovery tonight as I was thinking about this and reading an article I found on the International Brain Injury Association website on the importance of rituals.  I have been looking at this from the perspective of a Caregiver, seeking to manipulate rituals and habits and routines to serve my need for safety and ease in doing the care.

The article affirms the power of positive rituals to raise the quality of life in the brain injured.  I am applying this to those who are suffering from Dementia and losing themselves in the process.  Here is a quotation from the article titled “Overcoming Anomy: The impact of Positive Rituals on Quality of Life,” written by Dr. Thomas E. Pomeranz. “Each of these events (rituals) as well as the many hundreds of others which follow throughout the course of everyone’s day is uniquely ‘you.’  I actively choose my rituals as they evolve and develop over time — the evolution of my rituals is an ongoing process.  These rituals provide me with a sense of security, predictablility and continuity in my life.  How unsettling and tragic it would be if all my quirky mealtime rituals, like salting everything before tasting, using a teaspoon to eat my soup etc. were prohibited.”

Anomy is losing one’s identity, sense of purpose, becoming diminished in value.  The article observes that when the brain injured are trained in Occupational Therapy to change their habits and rituals, it fosters anomy, which them sometimes increases their acting out in frustration.  Pomeranz uses the term “nosocomial behaviors,” negative results from treatments intended for healing.

What that means to me is that by trying to change Mary Ann’s automatic pilot, I may very well be diminishing her, resulting in her resistant behavior.  She is just holding out for her identity.  My need for her to do things in a way that I recognize to be safer or that make my job easier may not help as much as they lessen her.  Maybe it isn’t safe for her to jump up and get her brush to run through her hair, but that is what she does, without thinking of the potential for falling.  Her automatic pilot from before the Parkinson’s guiding her actions.  My scolding her and insisting that I do it for her may make her safer and me less fearful, but something may very well be lost in the process.

Just as my rituals and routines help me order the corner of the world in which I live, Mary Ann’s rituals and routines and habits help define her as an individual.  My role as a Caregiver becomes more a task of accepting who she is and what she does even when it is neither safe nor convenient.  Rather than trying to change her, the precious little time and energy we have need to be spent looking for ways to be safe and function effectively in spite of those habits.  This part of the job of Caregiving will become harder as the Dementia increases.  A number of those who are much farther along in this journey have recently been reflecting on the need to come to acceptance as they deal with frustrating behaviors in their Loved Ones.  When finally acceptance comes, they are free to use all their energy finding solutions to each problem as it arises.

Both Caregivers and Care Receivers need rituals and habits and routines.  Caregivers need them to help maintain some control in their world, to keep themselves and their Loved Ones safe, and to make their life and the caregiving a little easier.  Care Recievers need rituals to keep from being diminished and losing their identity, so that they can sustain their identity, their individuality and their sense of security for as long as possible.

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.

 

April 28, 2009

Can Caregivers Give too Much Care?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Relationship Issues | Tags: , , , , , , , , , , |
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“Let me do it for you, Mary Ann, we are running out of time.”   “I’ll take that to the kitchen for you. ”  “What are you getting up to get?  I’ll get it for you.”

Someone made the comment to me that when Caregiver’s take over full time care of their Loved One, the Loved One’s ability to take care of him/herself tends to decline.  I don’t remember who said it.  I don’t know if the person who said it had any formal knowledge to validate the comment.  I just know that my own experience seems to allow the possibility that the observation was correct.

I feel responsible for Mary Ann’s well-being.  I am taking care of her.  I need to do for her what she cannot do for herself.  I am here to determine what she needs and wants and then see to it that she gets it.  She is virtually helpless to do even the most basic things.  I am her arms and legs.   My job is to figure out what she wants or needs when she is having trouble figuring that out for herself.  She has a right to have the highest quality of life that the Parkinson’s will allow. 

Caregivers are committed to take care of their Loved Ones.  The question is, can they do too much for their Loved Ones and do more harm than good in the process?  In other arenas, the term for helping too much is “enabling.”  Is it possible that in all our good intentions we may very well be doing less good than we thought? 

A less comfortable question is, do we sometimes take over tasks from our Loved Ones more for our own sake than their sake?  Are some of our generous acts of service rooted more in our impatience than their need?

Those are very tough questions quite reluctant to produce easy answers.  Mary Ann would love to be back in the kitchen.  There are knives there, very sharp knives.  The Cutco knives she purchased from a traveling salesman some time before we were married forty-three years ago, have recently been sent back to the company for sharpening.  A broken blade was replaced, as were the handles, and they were honed until razor sharp.   (By the way, all that was done only for the cost of shipping — the salesman was not lying.)  Those knives could cut to the bone in a fraction of a second.  When Mary Ann’s basic Parkinson’s medication kicks in, she has dramatic dyskinetic movements, arms waving around with involuntary muscle activity.  She falls easily.  Armed with knives she could easily do major damage to herself and anyone else within reach.  Hot pans with oil or water in them are equally dangerous in dyskinetic hands. 

The easiest solution is for her not to participate in any way in the food preparation process.  That is pretty much what has come to be.  It is much less stressful for me if she stays in her chair in the living room while I do whatever needs to be done.  That solution is the easiest one for me but not necessarily the best for her.  My need for her safety is one part of this solution, but another part is my seeking to avoid the stress of helping her do whatever part of the preparation process she can, while I am trying to get the rest of the preparation tasks done.  Our solution is easier for me but does not necessarily increase the quality of her life. 

At our last visit to the Cardiologist I asked about an increase in number and intensity of Mary Ann’s episodes of labored breathing.  One part of the answer from the Cardiologist was that her inactivity has diminished her muscle tone. 

Here is the major area of concern from my perspective.  Now that I am retired and at home with her all day long every day, I am right there, every time she stands up to go somewhere.   I ask where she is going and offer to get for her whatever it is she was going to get.   If she gets up to walk when I am not able to see her, when I do see that she is up and on the loose, I move as quickly as I can to offer her an elbow, or put my hand on the gait belt. 

One negative effect of my presence is that her freedom of movement is more limited.  Another negative effect is that she gets less exercise while I am so attentive.  Her muscle tone diminishes and the stress on her artery-blocked heart increases.  It takes less and less activity to trigger the labored breathing. 

The problem for me is that I am the one who picks her up when she falls, and I have seen again and again how close she has come to doing major damage to herself.  She has fallen and cut herself, resulting in a couple of trips to the Emergency Room to check for major damage and stop the bleeding.  I have seen her start to crumple and then lose consciousness for anywhere from a minute or so to ten minutes.  I have hurt my back trying to hold her up or get her up, putting at risk my ability to continue to care for her. 

How much help is too much help?  

Whenever we have any time pressure, or my impatience kicks in, I do little tasks that she might be able to do if she was allowed to do them at her pace rather than mine. 

When is the help actually more for the sake of the Caregiver than the one receiving the care?

Sometimes I am so available, that rather than doing a task herself, a task she could do, she lets me, asks me to do it.

When is help no longer help, but enabling behavior that slowly takes away the ability to do the task from the one for whom you are caring?

Caregivers can care too much.   We can do too much.  We can indulge our own impatience and steal abilities from the one we love. 

The challenge is to find the location of the place in between too much help and too little help.  If nothing else, asking the question, “Should I do it or let her do it,” allows the possibility of finding that place.

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.

 

April 17, 2009

Caregiver Guilt: Guilty or Not Guilty?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Relationship Issues | Tags: , , , , , , , , , , , , , , |
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Yes!!!

In yesterday’s post, I said this one was coming.  I have been thinking about it for a long time.  Those of us who have full responsiblity for another human being suffer from feelings of guilt.  We just do — and yes, sometimes we actually are guilty and sometimes we are not guilty. 

There is nothing in particular that triggered my thinking about this today.  It was a long and somewhat frustrating day.  The morning routine went fine, the one through which I declare that there is some shred of control left in our lives in spite of Parkinson’s Disease joining the family twenty-two years ago.  Then some repair work that was to be done at our house was sabotaged by the carelessness of the vendor’s service manager.   The resolution of that problem is not yet in sight. 

After that start to the day, my list, the list by which I seek to create some order out of our chaos simply didn’t accomplish its task.   It did not order my day.  I didn’t do it, much of any of it.  I looked at it often.  I did some self-talk trying to encourage doing enough to check off an item or two.  It just didn’t work — I just didn’t work.

One thing that did take control of the day was the activity of the alimentary canal of the one for whom I care, about whom I care.  She was up and down, in need of an elbow to steady her, or a task to be done throughout the day.  There were anywhere from moments to minutes between the needs — no more than minutes. 

With that said, I could have, should have accomplished more. 

The guilt that is part of a Caregiver’s world is a constant presence.  It does not really have to do with how good the care is, how well the Caregiver does at responding to the needs of the one for whom they are caring.  In fact, the better the care that is given, the greater the opportunity to feel guilty. 

Caregivers feel guilty for not doing enough, not doing all that they should do as well as they should do it.  The harder they try to be the perfect, nurturing, loving, kind, thoughtful, capable Caregiver, the farther behind that goal they fall.  

The problem is obvious.  There is more that should be done than can be done by any one human being!  There are no boundaries around all that should be done to help your Loved One have all that she/he needs to have the life she/he deserves.  It is impossible.  The Disease has joined the family.  Caregivers can’t fix that.  Mary Ann has Parkinson’s.  I can’t change that.  I cannot give her back the life she deserves.

Why do Caregivers then feel guilty?  Mary Ann has been to Physical Therapy, Occupational Therapy and Speech Therapy.  We have pages of exercises she should be doing.  There are games that should be played to keep her mind stimulated.  I should get her out more, find entertaining activities to keep her from being bored.  I should learn how to cook three good meals a day that are tasty and pleasing to her palate. 

Why do Caregiver’s feel guilty?  We aren’t always nice!  I get irritated!  I get irritated when she falls after making the same frustrating choice that has resulted in a fall hundreds of times  before (literally, in twenty-two years).  She doesn’t want to fall.  She has Parkinson’s Disease and Orthostatic Hypotension and the side effects of medicines, but she still wants and needs to get up and move.  I get angry at her when the Parkinson’s deserves the anger. 

Why do Caregivers feel guilty?  Yes I love her and am completely committed to her care, but I don’t like having my biggest needs trumped by her tiniest needs.  I am well.   She is sick.  I shouldn’t resent her for something she can’t control.   The truth be known, she is no more perfect than I am.  Because she has Parkinson’s does not make the things that used to be irritating any less irritating now.  I am hardly sweet and wonderful.  I am also just as irritating and frustrating to live with as ever.

It seems to me that one challenge for Caregivers is to separate the things of which we are guilty from the things of which we are not guilty. 

We are not guilty!  We cannot do all the things we should do.  That means we will not be doing a whole list of things we should be doing.  Every helpful suggestion for what we should be doing just moves the already impossible goal farther away.  Caregivers need to come to terms with a simple reality.  We are just people.  We have a life too.  It is actually healthy for us to set limits on how much we do so that we can continue to give good care. This is a marathon, not a sprint.   We cannot make up for all that the chronic illness has taken away from our Loved One.  We will soon become completely disabled if we try.  Feeling guilty about what we cannot actually accomplish is a waste of precious energy and a weight on our spirit that can’t be carried for long without breaking that spirit. 

We are guilty.  We actually do say things we should not have said.  We do blame our Loved Ones for things over which they have little or no control.  We really are imperfect.  We do fail to do things that we could have done to make a real difference.  We take out on our Loved Ones our frustrations with the Disease by our tone of voice or our unresponsiveness or whatever subtle tools we use to punish them.  It does us no good to do all sorts of mental gymnastics to try to justify our behavior.  It is a waste of time.  We are guilty! 

What can we do with the guilt we deserve?  We can’t undo what we have done that we should not have done, or not done that we should have done.  For some of us there lies within our spirituality the freedom to admit our guilt, face it boldly. without fear, and refuse to be disabled by it.  The kernal of truth that lies in the very center of the spiritual tradition that nourishes me is that the One who chooses that I exist, loves me unconditionally with love more powerful than all the things for which I rightly feel guilty.  That love is not weak and shallow and without consequences.  It is easy to feel guilty.  We can wallow in it, get depressed on account of it, and give up trying.  Unconditional love, mercy, forgiveness is much harder.  It implies the possibility of change.   It offers the freedom to change.  It removes the excuses we use to avoid growing. 

For those who do not have a particular spirituality or do not understand there to be a spiritual dimension to life, the issue is the same.  Feeling guilty is still a waste of time.  Naming the things we have done that are actually wrong, harmful, destructive is a healthy first step.  Our primitive brain elicits words and behaviors that frustrate our humanity.  We need to face that before we can choose behavior that nurtures our humanity.  The task is to identify and accept the truth about ourselves and choose behavior that allows us to grow and change and become more than we have been. 

However we define the nature of our humanity, whether in spiritual terms or otherwise, we can find meaning in our caregiving, nurture our humanity, grow in our ability to live full and complete lives even in the company of a chronic illness that seems to be hell-bent on destroying us and our Loved Ones. 

Caregivers, are we guilty or not guilty?  Yes!!!  With that clear, let’s get on with it.  We have things 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.

 

April 16, 2009

Caregivers, Hypocrisy can be a Good Thing!

Posted by PeterT under Meaningful Caregiving, Relationship Issues | Tags: , , , , , , , , , , , , , , |
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As a retired Pastor, I can’t tell you how many times I heard someone say to me that they had no use for churches since church folks are a bunch of hypocrites.   It is certainly true, churches are full of hypocrites, but so is every other place that has people in it.  I am here to suggest that being a hypocrite isn’t necessarily all bad. 

This post is not about churches, it is about Caregivers.  I am convinced that the only way to be an effective Caregiver is to be a hypocrite. 

First of all, there is certainly hypocrisy that is unhealthy.  Debilitating  hypocrisy is the creation of a false image of yourself.  It is the pretense that you are something you are not.  That sort of hypocrisy gets in the way of honest communication.  It hinders growth.  It promotes a kind of denial that blocks the ability to see the truth. 

I have what seems to me to be a fairly realistic view of people.  I expect people to act in their own interest.  As a result, I am often suspect when someone presents himself or herself as a wonderful, selfless, noble bearer of goodness, caring only for the welfare of others.  Let me add immediately that while I am suspect, I do not rule out the possibility that some are exactly that self-giving and noble.  I just don’t expect it.  Most of us are not. 

Those of us who are Caregivers have probably heard others wonder out loud how we do it.  Sometimes we are embarrassed by people affirming our goodness.  I think it is a good thing to accept those words of affirmation, and appreciate that we may very well be doing a good thing.  The problem comes when we begin to believe that we are just plain wonderful and noble.  The problem comes when we allow a false image of ourselves to develop.  That is a kind of hypocrisy that is destructive.  It hinders growth because it is not real.

Caregivers care about ourselves.  There is self-interest folded into our caregiving.  I guess I need to speak for myself rather than for all Caregivers.  The rest of you are probably more noble than am I.  I love Mary Ann.  It makes me feel good to take care of her.  I get more out of it than she does.  I want other people to respect me.  I care about my image with others.  There is a self-serving element to what I do to care for Mary Ann.  I find meaning in doing the care.  I want to have meaning in my life.  This task offers me the opportunity to find that meaning. 

Then there is the harsh truth that I am not always very nice.  I get grumpy.  I sometimes say things that do not build her up but rather simply vent my frustrations.  There will come a post at a later time on Caregiver’s guilt.  In the matter of hypocrisy, it is far healthier to be painfully honest with ourselves as Caregivers, without creating some false image of who we are and what we are doing.

Then what on earth can be good about hypocrisy when caring for someone else who needs your help?  The etymology of the word is helpful.  It has to do with actors and acting.  If I remember correctly from all those years of Greek, the word’s roots are in the use of masks in the pretense of acting.  How can acting be a good thing when caring for someone who needs your care? 

Good hypocrisy is acting in a way that is good and caring and loving and kind, even when you don’t feel good and caring and loving and kind.  Good hypocrisy is not waiting until your insides are spontaneously producing good behavior but instead, just going ahead and doing the good behavior. 

If I were to wait until I am pure and good and wonderful and noble before doing good things for Mary Ann, there would not be very many good things done.  Good hypocrisy is refusing to allow grumpiness and resentment and frustration to decide every behavior.  Good hypocrisy is choosing good when you don’t feel like being good. 

It is very tempting to use the respected trait of honesty as excuse for bad behavior.  “I was just being honest with you when I said those harsh words!”  “It would be hypocritical of me to be kind to you when I don’t feel like it!”

When counseling with couples about to be married, one of the things that seemed to me to be important to say concerned the nature of commitment, duty to one another.    My counsel was to treat each other in a loving and caring and affirming way during those times in their marriage when they did not like each other.   I was convinced that unless they learned to do that, a marriage of any length was unlikely.  The good news is that when they got through one of those times in their relationship, their relationship would be stronger than ever, stronger than it could have been without going through that time.  Mary Ann and I have been married well over forty-three years now.   We have had a pretty normal life together.  There have been times we were enthralled with each other and times we didn’t much like each other.  We chose to love each other anyway (one of our favorite phrases).

The wonder of it is that when we choose good behavior in our caregiving even when we don’t feel like it, we can actually be changed by the good behavior we have chosen.   Just as good behavior can emerge from good feelings, good feelings can emerge from good behavior. 

Maybe hypocrisy isn’t always a bad thing.  Being honest enough to admit to ourselves our selfish motives and unloving feelings frees us to face them down and refuse to let them rule.  Having the courage to be good when we don’t feel like being good allows us to grow into more than we could have been otherwise. 

It seems to me that good health for Caregivers demands enough honesty to face the reality of our own selfish motives and resentments and less than noble thoughts.  Healthy caregiving demands the courage to face all that and still do the right thing, still act with kindness and concern and gentleness.

Maybe a little hypocrisy can be a good thing. 

 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.

 

April 11, 2009

Caregiver Decisions: Right or Wrong?

Posted by PeterT under Meaningful Caregiving, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , |
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Should I or shouldn’t I?  Decisions come at such a pace that often it is just impossible to give each one its due.  Sometimes little decisions accumulate, and before you have time to really think about it, the decision is made.  Which decision is the right one?  How can I be sure it’s right?

About a year and a half ago, I made a decision, a big one.  I decided it was time to end a very satisfying and stimulating and meaningful career of some forty years to do full time care for Mary Ann, twenty-two years into Parkinson’s Disease.  Was it the right decision?

While the decision was made and announced a year and a half ago, the actual event took place about ten months ago.  I haven’t yet had a full year’s cycle since the day that career came to a screeching halt.   If I had been burned out it would have been an easy call.  If I was tired of the people and the demands, retirement would have been the obvious choice.  If I felt the people I was serving were anxious for me leave the job (I have no doubt some were), it would hardly have been a decision at all.  There was warmth and affirmation voiced by enough to make me feel that I was appreciated.

The truth is, it was actually a decision!  Most choices we make, while we may call them decisions, are actually simply the logical next step along a path that is actually very clear.

The word decision has as part of its root the word translated “cut.”   An actual decision is a choice that demands cutting away something of value for the sake of something else of value.  Which is which is not always clear.  In fact, my use of the word “decision” demands that the choice is not clear — at least at first glance.

I made the actual decision to retire in approximately thirteen seconds, while sitting across from Mary Ann at McFarland’s Restaurant.  Does that sound cavalier, irresponsible?  I saw Mary Ann struggling to get food out of the dish to her mouth, finally giving up in frustration.  It is as if a switch in my mind flipped.  It was a switch of recognition that the time had come.  The time had come to give her my full attention instead of having to struggle for bits and pieces as I focused on my career away from her.

Understand, while the decision was made in thirteen seconds, the process leading up to it had gone on for years.  There were many pieces that were coming together to create the environment from which that decision emerged.  While I would be retiring a year early relative to Social Security, I was vested in my pension and would have a far smaller income stream but not much different from what would be available if I waited another year.  The shock of the lower income would be significant whatever the year I chose.  Another piece was that the number of Volunteers to stay with Mary Ann was diminishing at a fairly brisk pace.  My Daughter and Son-in-Law  needed to return to Kentucky, since the two year commitment they had made was up.  The employer in Kentucky was ready for the return of a valued employee closer to the home office.  Our Daughter had been our mainstay during those two years.

One of the significant pieces of the landscape in which the decision was made was the difficulty I was having doing my work justice with the roller coaster of demands that come with caregiving.  What insulated me from that dimension was a remarkable professional and support staff that, to put it bluntly, covered my tail!  There was a high quality of service provided the community in spite of my limitations.

I can remember saying many times that I would not be a good full time caregiver.  I had decided to work well past retirement age, using whatever resources were available to care for Mary Ann while I worked on.  Even when I began thinking about moving toward retirement, I did so with a deep terror that it would be a disaster for both Mary Ann and me.

In that thirteen seconds, it became crystal clear that I needed to have time with Mary Ann while she needed me most.  Actually, Mary Ann was not really so excited about the prospect of my being at home all the time.  She has a set of feelings of her own about my presence with her — but I am the one writing this post, so you will get it from my perspective.

While I would like to be seen as noble and compassionate and a dedicated husband, I did it more for me than for her.  I have a pretty realistic understanding of humanity.  Most of us do what benefits us.  I needed to stop working and come home to Mary Ann.  I needed it for selfish reasons.  First of all, I do love her in that deep way that includes romantic love and the kind that takes decades to build.  You can only understand it when you  have experienced it.  I made a choice that I could live with.  I care who I am and who I become.  Making that choice brought with it pain beyond description and a deep feeling of worth and value that cannot be stolen from me.

When a decision must be made, each option has good stuff and bad stuff in it.  If it were all one or the other it would not be a decision.  To make a real decison means losing the good stuff in the option to which you say no and gaining the bad stuff in the option to which you say yes.

This week I am feeling the pain of what I have lost.  At the same time, I celebrate what I have gained.  I have gained time with Mary Ann, including moments of frustration for both of us and moments of joy.  Yes, I am watching her slowly decline, but I am here to see it and have some small impact on how it goes.

In a sense, I have moved from a life that included external validation from a salary, from working in a public forum, from others whose lives I entered at some of their most important times, to a life focused on internal validation and the chance to be there for another human being (whether she likes it or not) in a meaningful way, one that makes a difference daily.

Did I make the right decision?  I have no doubts!  In fact, that thirteen seconds was so decisive as to have freed me not to waste a minute on regrets or second thoughts.  I am free to live each day to the full, whatever frustrations or joys it brings.  I get to do it with someone I love.

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.

 

April 9, 2009

Caregiver’s Loneliness

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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A comment on a post I wrote a couple of nights ago raised an issue that is significant for many Caregivers who are doing full time caregiving all day long every day.  The writer mentioned that she often uses the time after her Loved One goes to bed to try communicate with others, since the opportunity for adult conversation is limited.

For many of us conversation that was a routine part of our daily lives with our Loved One and with others has pretty much ceased.  Especially those caring for someone with a form of Dementia find it tough to converse meaningfully.  A number of recent emails from others who are caring for spouses with Dementia have included reflections on the challenge of dealing with the lack of meaningful conversation and the loneliness that sometimes settles in.

Until I retired a number of months ago, I was active in a profession that involved lots of meetings, visiting with people, counseling folks struggling with problems, speaking in front of groups, and many hours each day communicating electronically (email).  All of that came to a halt pretty much the day I retired.  Emails ceased, phone calls stopped, meetings ended, there were no more visits to be made, no more speaking in front of groups.

Now there is one person stuck with me twenty-four hours a day, seven days a week, someone who has never really been a talker and now after twenty-two years of Parkinson’s has taken its toll finds great difficulty getting thoughts into words and sustaining conversation.  She has struggled with the challenge of having me there constantly, so I can hardly complain.  She tired long ago of listening to my voice as it drones on and on.

One comment in an email I read tonight provided an image of the Caregiver in need of communication.  She mentioned that when she was at the dentist getting her teeth cleaned, every time the Hygienist took her hands out of her mouth she started talking immediately, not stopping until the instruments were back in her mouth.

I find myself starting conversations in with strangers in line at the store, or making conversation with the person at the register. Anyone who dares cross our threshold is likely to be fully engaged in conversation by the time their second foot has landed inside.

Anyone who reads this blog has certainly noticed the length of the posts.  When I write I imagine that there are people actually reading this with whom I am having conversation.

Living in a world of silence other than the sound of the television, can certainly produce a deep sense of loneliness.  I suspect there are lonely Caregivers by the tens of thousands out there.  It seems to me very likely that lots of them, probably a majority, are not computer users who have the option of going online and relating to others regularly. If the Caregivers are lonely, imagine how lonely and bored those who need the care must be.

There are no simple solutions to the loneliness and isolation, the boredom and lack of conversation that comes with the Caregiver and Carereceiver territory.  For me the battle with loneliness starts with developing a rich inner life that experiences each moment fully and fills my thoughts with wonderful images from my environment, from reading, from the lives of others I have encountered, from my own story, from a head filled with unfinished business, from intellectual and spiritual curiousity.

While I have never been a writer, the exercise of writing these posts is safisfying and fulfilling.  Reading emails and occasionally responding to those who are caring for spouses with Lewy Body Dementia is engaging.  When Volunteers come to stay with Mary Ann to give her a break from my constant presence, it takes me a long time to get out the door as I engage them in conversation.  I find myself on the phone with brothers and sisters more often than ever before in my life.  Trips to the coffee shop to get a cup of coffee take a little longer. When we attend the Parkinson’s Support Group meetings, I am not shy in speaking up.

Since I am not good at all at small talk, I know very little about sports and I am completely uninterested in debating politics, conversation just for the sake of talking is not all that satisfying.  I suppose I can talk about the weather with the best.  I do have a genuine interest in people’s stories, so given the opportunity, I will find out what you do and what you like and dislike about it, where you have lived, what challenges you have faced and how you are coping with them.  The problem when homebound by the Caregiving task, or the chronic illness, is that the opportunities for such meaningful conversations are limited.

While it helps, electronic communication is not fully satisfying to me since I thrive on the non-verbal elements of communication as well as the actual words themselves. Getting out of the house with the one for whom you are caring is worth the effort.  Go anywhere.  Do anything.  Put yourselves out there where the chance for human interaction and verbal interchange is possible.

Every job has its good points and its bad points.  The trick is to “accentuate the positive and eliminate the negative” as the lyrics to an old song say.  Celebrate what is good that the Caregiving experience brings into your life.  Refuse to give the negative more power than it is due in ruling, in defining your life. I know that is far easier said than done.

Caregiver loneliness — Are you?  What are you doing about it?  What works for you?

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.

 

April 4, 2009

Carereceiver’s Feelings about Caregivers

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , , , , |
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As I traveled in the car coming back from my Renewal Retreat, I thought about how the transition back to my role as the full time Caregiver would go.  Having done retreats before, I knew that once I was in the door, there would be little chance to ease back into the demands.   Having realistic expectations about the transition back to Caregiving duties has helped me very much in the last years. 

It is actually unreasonable to expect the person who has been left at home to be anxious to celebrate the wonderful experience you have had away from him/her.  As Caregivers it is important for us to try to put ourselves in the place of our Carereceiver who does not have the luxury of going on a retreat and enjoying some solitude, doing things for the sake of renewal, things they can no longer do. 

Sometimes the very things we do to help maintain our equilibrium so that we can continue to be good Caregivers make our Loved One’s jealous.  How could it be otherwise.  We are the people closest to them.  We are the ones they depend on for all their needs.  They would love to be able to take care of themselves.  They would love to take some time to do the things that used to bring them joy.  They would love to get away on their own just to enjoy themselves.  They can’t any longer.  Our freedom, however limited we may feel it to be, can be for them a painful reminder of the freedom they have lost. 

As a result, sometimes Caregivers don’t hear the words of appreciation for all they do, words they would like to hear.  Sometimes Caregivers receive some passive aggressive indications that they are not appreciated.  Sometimes Caregivers feel as if their Loved Ones resent them instead of appreciate them.  Sometimes they do resent us, whether it is fair or not for them to do so.

I have taken over the kitchen duties from Mary Ann.  Her way of responding if anyone asks about cooking is to say, “Theywon’t let me in the kitchen any more.”  She says it with a tone that sounds blaming.  It is the way she expresses her frustration that she has lost one of her most meaningful activities, one from which she got lots a positive feedback and satisfaction.

When the Grandchilren come and visit, there are hugs and kisses for both Grandma and Grandpa, but I am the one who can respond to the Grandchilren, who can talk with them and read to them and play with them.  The attention they give me is hard for Mary Ann to see.  It is another reminder to her of what she has lost. 

When people visit for any reason, her words are few or barely audible due to the progression of the Parkinson’s Disease.  I am the one who engages in conversation.  She has always been the entertaining one who had the smart-aleck comments to make.   She still has that wicked sense of humor and will get you when you least expect it.  Those who know her well still enjoy her sense of humor.  Now, her thoughts don’t always translate into audible words quickly enough to keep up with many conversations.   Of course, she gets frustrated and a little jealous.   

Caregivers are the ones who are the most accessible when Carereceivers need to vent their frustrations.  Their limitations are highlighted by anything we do, especially anything that was in their territory before the chronic illness took its toll. 

We feel hurt that we are doing so much for them but are not appreciated adequately for it.   One of the tasks that comes with caring for someone we love is to allow them to express their frustration, yes, even at us.  We are only human, so it does hurt when it happens.  The real culprit here is the chronic disease, in our case, the Parkinson’s.  While resentment and hurt feelings are a part of the Caregiver/Carereceiver relationship, it is the third member of the relationship, the chronic disease that is the source of the frustrations. 

In our best moments, we can talk about the frustrations and the jealousies and the hurt feelings and the lost freedoms.  My goal in keeping my equilibrium in the face of what the Parkinson’s has tried to steal from us is to match expectations with reality.  If I am constantly expecting Mary Ann to behave in a way that caresses my ego as a noble Caregiver, when she does not, my feelings are hurt, I am disappointed, and even more frustrated by all the difficult tasks associated with that Caregiving.  When I remember what has been taken from her, how hard it is for her to accept that she cannot do almost all of the things that formerly brought her satisfaction, when I remember what she has lost, it is easier to accept the times her frustrations come my way. 

It isn’t fair, it is just what it is.   Yes, there are sometimes hurt feelings and misplaced frustrations.  It comes with the territory.   The goal is to recognize the real culprit and refuse to allow that culprit to damage our relationship.

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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