March 23, 2009

Caregivers/Receivers Romance! (Rated PG45)

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

In last night’s post I said I would do it.  Tonight I will keep that promise, or threat, depending on your perspective.  As I said last night, this is rated PG45 since that number exceeds the ages of our Daughter, Son and their spouses.  As Daughter-in-Law Becky once said when I was only hinting at something that could move into the forbidden area of parents intimate activity — “Too much information!!” 

Since I am old and by some measures (probably most measures) a little stodgy, there is no need to fear too much information.  In saying that, I have, of course, lost all those curiosity seekers who ended up here in hopes of finding something titillating.  I am not sure this old ticker could handle much titillation.  With that said, we old folks still have young folks living inside of us. 

I remember sitting in a movie once, I think it was one of the Grumpy Old Men movies of some years ago.  There was a scene in which Walter Matthau and Ann-Margaret kissed — right on the lips.  Everyone in the theater who was under thirty groaned audibly.  From right behind us I heard at an “Oh gross!” 

I do have to admit that the thought of kissing Walter Matthau full on the mouth is hardly appetizing.  Then again, Ann-Margaret is another story.  What the young among us probably don’t understand is that we old people think other old people are cute, sometimes downright good-looking. 

What is at issue for Caregivers and Carereceivers is how to keep romance alive when meals are often interrupted by bathroom duties and waste management is a routine activity, when arms and legs and stomachs have grown or the skin on them gathered into wrinkles.  How is it possible to get excited about one another when one is tired and annoyed by having to do everything for the other, and the other is tired and annoyed at being followed around and scolded every time there is some behavior the other one doesn’t appreciate? 

Now comes the real problem.  I have just asked the question.  How the heck am I supposed to answer it???? 

Let me start this way.  Mary Ann and I are in our mid-sixties.  When I look at her, I see the cutie whose engagement picture hangs on the wall of our bedroom.  Forty-four years has not stolen from me the feelings that drew me to her.  I would not presume to speak for her.  In fact, I might actually prefer not having her speak to this issue.  I can remember the feelings I had before we met, fell in love and married.  I remember the profound loneliness of being a young single fellow who sometimes felt deeply sad, not sure why.  Once Mary Ann entered my life, never again did those lonely, deeply sad feelings return.  While I don’t fear death, I do fear the return of those feelings, should she leave before me. 

How do Caregivers and Receivers experience romance?  First of all, we do!  Understand, romance is not just about body parts and orgasms and ejaculations.  In fact, those whose understanding of romantic love centers on the biological act of intercourse, have no hope of ever experiencing romance.  By the way, old people actually do know about the biology of conception.   Some of us have had children.  While I happen to have been a pastor at the time and am familiar with the Biblical account of the Virgin Birth, we had our children the usual way. 

I have read many emails from those who are caring for a spouse who has ceased to be the person they married.  They have only memories to draw on for those romantic feelings.  How can they find a way to express their love.   If love was just about body parts and couplings, there would only be sadness left for many. 

The marvel of it is, love, romantic love, has depth and awe and wonder that is only hinted at when people first fall in love.   My favorite movie of all time is no secret to those who know me well.  It is “The Man from Snowy River.”  I don’t know what lies deep in the recesses of my psyche that draws me to it, but I can tell you what I recoginize about it that draws me.  They are simple things.  I love the photography, the scenery.  That movie is the reason one of my dreams has been to visit Australia.  The scenes of running horses will take your breath away.  There are two central themes that draw me to it.  One is the coming of age of a young man who proved himself in spite of the odds against him.  I suppose a 5′ 6″ kid with who had Rheumatic Fever and was not at all popular might understandably enjoy that sort of theme.  The other central theme is the romance that grows between Jim and Jessica.  It is beautiful and touching even to a guy not much into chick flicks.

In the sequel, “Man from Snowy River Two,” the ending is, as with every such story.  Maybe not in so many words, but the ending is, and they lived happily ever after.  “Happily ever after” is what romance is about.  The “ever after” in happily ever after lasts through smelly socks, passing gas, spitting up babies, rebellious teenagers, unsuccessful recipes, stupid comments, throwing up, diahrrea, tragic events, bad mistakes, arguments, hurt feelings.   The love that creates and sustains a relationship after riding off into the sunset can endure waste management, food that lands on the lap and on the floor, caring for bedsores, seeing that blank look of no recognition in the eyes of the object of that love, because of the dementia, hearing harsh and unloving words from the mouth that you kissed in former years. 

That isn’ t pretend love.  It isn’t some poor substitute for the rolling and grunting of biological coupling (which, by the way, is great fun).  It is something that is in its own way, beautiful and meaningful and romantic and intimate beyond anything that could have been imagined when lips touched in that first kiss decades before. 

I will say this much that is specific and personal.  Once or twice a week, I have the job of washing and drying Mary Ann’s hair.  (The Bath Aid does it twice a week also.)  Mary Ann has great hair for which she often gets complements.  While the Parkinson’s has taken much from us, washing Mary Ann’s hair brings wonderful feelings of intimacy.  It is tactile and gentle and relaxing and warming.  Running my fingers through her hair as I dry it is my experience of “happily ever after.”   The other day, Mary Ann gave me a kiss on the neck as I was bent down pulling up the disposable underwear after using the commode.  (Too much information?)  Strangely, in a way, the Parkinson’s has brought more intimacy than it has taken away. 

I would like to think that  Jim and Jessica will grow old together — that their love will grow until they know what it is really like to live happily ever after.

Those of you who are in the throes of caring for a spouse whose chronic illness creates barriers in your relationship, I guess I would like to know what brings real romance into your lives.  How do you cope? 

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.

 

March 22, 2009

Caregivers: What about Death?

Posted by PeterT under Daily Challenges, Meaningful Caregiving | Tags: , , , , , , , , , , , , , , , , |
[3] Comments 

I spent almost an hour this evening with someone whose family Hospice told is in his last twelve to twenty-four hours of life.  Before retiring last summer, my career had been to serve as what in my religious tradition is a called a pastor.  What I have to say in this post is not only for those who happen to have a spirituality like mine, or any spirituality for that matter. 

First, I have a belief system that is secure and unwavering.  There are tools at my disposal when spending time especially with the dying, tools that offer profound hope in the face of death.  I make no apology for having such a belief system.  I do not ask the readers of this blog to share that belief system or any belief system.  It is my hope that my reflections on death have implications for all of us as we finally have to face the inevitable.  We cannot make it go away.  As helpful as denial is in the day to day celebration of life in the face of chronic illness, death must be faced for there to be any real joy in life.  Otherwise we are left with a spectre hanging over us that steals the joy from our days. 

Doc and I talked about how hard it is to leave behind people who are loved deeply.  Who will take care of them?  When the time comes, both those giving the care and those receiving the care have to come to terms with the separation that comes with death. 

Let’s not tiptoe around this one.  I have heard the plight of folks much farther into the unbearable pain of caring for someone who no longer recognizes them, someone who can do nothing for him/herself, who cannot converse, who is for all intents and purposes gone with only a shell of their former self left.  I have felt their frustration as they talked about struggling to love what is left of someone they loved deeply before the Dementia took its toll.  

How can they not long for death to come and release their Loved One from their helplessness?  How can they not long for death to release them to live again if they see death to be transitional rather than terminal.  This one is hard for me to talk about since Mary Ann and I are still far from that point.  In fact, I am anxious to write a post on Caregivers’ Romance, which by the way will be rated PG 45.  It is rated that way to warn our children and their spouses who may put what I write in the category once named by our Daughter-in-Law, “too much information.” 

For tonight, it is death that is on my mind.  Is death friend or foe?  While my theology has clear language addressing that matter, the experience of folks with whom I have interacted over the years is not simply theological.  It is experiential.  When death comes in a sudden, tragic way, when the victim is young, death is the enemy.  When someone has lived fully for many decades, when someone has fought a terribly debilitating disease, death may very well be a welcomed friend. 

The truth is, of course, that death just is.  However we define it or describe how we feel about a particular death, it just is.  We have no say about whether or not it will come.  It will come.  How it comes, when it comes is worthy thoughtful reflection and discussion.  Whether or not any one of us will die is not up for discussion.  We will. 

 My goal with Doc was to help him find his way to peace.  The way to peace is to finally decide to let go.  Both Caregivers and Carereceivers have similar problems.  Neither wants to let the other go.  Each thinks that by hanging on to the other, they can change the inevitable.  Each thinks they can keep the other for them to love.  They can keep the love alive, just not the body. 

Until we come to terms with death, we cannot live meaningfully — sadness is unbearable, and joy is shallow and fleeting.  We experience little deaths every time there is a separation.  There are tearful goodbye’s at the doors of preschool classrooms and college dorms and weddings.  I remember my Mother commenting that when we returned home for a visit as an adult family, when we left, she had to get in the car, go out and do something.  It was hard to say goodbye even then. 

We don’t want to let go.  If we don’t, however, if we don’t let go of that little one trying to learn to walk, that little one will never learn to walk.  If we love our child, we have to let go.  Otherwise it is not love, it is ownership, possession.  It is about us, not the child. 

Yes, to let go at the time of death is an act of love.  It is an act of love for a Caregiver to finally say, “I love you, I will miss having you here, but it is okay for you to leave.  I will be okay.”   It is an act of love, a final beautiful gift to the Caregiver and those who want so badly to keep the one they love, it is a gift to say to them, I love you, I will miss you, but it is okay for me to leave leave you now.  You are free to live. 

For the dying whose capacity to communicate has long since gone, the words of love may not be there, but the person who lived in that body before the Dementia took him/her still leaves behind love from better times.  The care you have given, maybe long after romantic feelings have been snuffed out, carries within it, love from former times.  Death can free memories of better times to surface and overshadow the struggles and the pain and the hopelessness. 

Death by its very existence gives life its sweetness.  In his dying, Doc is touching his family in a way that has folded into it an intimacy that can be found nowhere else.  I have had the privilege of experiencing a moment of that deeply moving intimacy. 

Is death friend or foe?  Sometimes it can be a merciless foe.  Tonight, as it approaches, it is a wise and thoughtful friend – a gift ready to be opened.

 

March 21, 2009

Stuck Caregiving! What am I missing?

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

We are now into the later stages of Parkinson’s and moving into Parkisonson’s Disease Dementia (a Lewy Body Dementia).  Traveling is tough.  We can’t really plan much of anything since we never know from one hour to the next whether Mary Ann will crash and fold for a couple of hours of napping, have a major intenstinal event, or need a trip to Baskin and Robbins, or Sonic, or DQ or Sheridan’s.  Getting very far from medical facilities that can handle the complexities of her convergence of medical problems, provides a strong disincentive to venturing very far. 

To a certain degree, we are trapped by the Parkinson’s.  The dream of that train trip across Canada appears to be left to the world of fantasy.  My dream of a log cabin in the country is not an option, although I doubt I would be willing to do the work necessary to take care of such a place anyway.  That trip to the Snowy Mountain region of Australia is out of the question. 

There are all those other retired folks who travel and dine out and go to shows and concerts.  We have never so much as seen the Grand Canyon.  Just watch cable television for a while and look at the beautiful, exciting places to go and things to do.  There will be no dinner-dances (gratefully, since I can’t dance).  There will be no treks into the woods or wetlands for rare bird sightings. 

What are you missing?  What are the things you planned to do before the Chronic Illness joined your family?  Are you going stir crazy looking at the four walls of your home, or the inside of your car as you make short local trips, or the waiting rooms of multiple labs and doctors offices?

I have to admit that at the moment, I do not have identifiable feelings of resentment about what I am missing.  I can only speak for myself on this.  I will not presume to speak for Mary Ann. 

We have had some adventures in our life together, however low key they may be.  We have toured England, the Netherlands, Austria, Switzerland, Belgium.  We have cruised the Virgin Islands and traveled to Denali in Alaska and cruised the coast to Vancouver.  We have skiied in Colorado.  There was also that trip to DesMoines — the notorious diversion from Colorado triggered by uncooperative children in the back of the station wagon. We have made it to see Santa Barbara and the Carolinas. 

All that is not to impress you with our travels.  For over forty-three years of marriage, that is nothing to brag about.  That is not the point.  The point is, as much as we were in awe of the beauty we saw, it did not give our life meaning and purpose.  What we saw was interesting greenery, colorful flowers, varied topography, beautiful structures.  Sometimes we stayed in rooms with nice looking decor, sometimes in very ordinary accommodations. 

When a Volunteer comes to stay with Mary Ann for a couple of hours, I sometimes head to a nearby lake with some of the most beautiful gardens imaginable, filled with ponds and waterfalls, colors dramatic enough to take my breath away.  I can head out to places where Eagles are nesting and water birds are migrating by the tens of thousands.  Within an hour and a half of here we can find restaurants as good as any anywhere and take in the occasional show.  When all the pieces fall in place, I can travel to a spot a few hours away and spend two or three days in utter solitude, hiking and reading, observing wildlife, feeling the warm sun and the soft breeze on my face, the rustle of the leaves, sunsets that fill me with wonder. 

Yes, I am missing wonders that are spread all over the world.  What I am not missing is the capacity to experience the marvel of all there is to see as the sun and the moon and the stars illuminate the part of the planet in which we live.  The topography (admittedly, pretty flat in this Midwestern location), the flowers, the birds, the trees, the wildlife, restaurants and stores and movie theaters are here to be experienced. 

More than that are people of all sorts, with stories to tell.  In fact, through the wonders of technology, I can interact wtih people from all over the world.  In our online group of Spouses of those with Lewy Body Dementia, there are people from New Zealand, from Italy, from Wales, from Canada, from all over the this country.  There are children and Grandchildren to be celebrated.

I guess I am just not sure I am missing anything so important that it needs to make me sad.  Sure, if circumstances allowed it, we would take that train trip across Canada or see the Grand Canyon, I would venture off to Australia, live in a log cabin in the country, but if none of that ever happens, I will not despair at all that I have missed in life.  Life has been full to the brim.  More than I ever thought to dream has come to be in one way or another. 

Again, I have to ask, what would you like to experience were it not for the commitment to Caregiving that shapes your life now and limits possibilities?  How does it make you feel no longer to have the option to realize those dreams as you had imagined them?  What do you do with those feelings?

 

March 20, 2009

Caregivers: What did we do to deserve this?

Posted by PeterT under Daily Challenges, Meaningful Caregiving | Tags: , , , , , , , , , , , , , , , , , , , , , , , |
1 Comment 

Are you as tired as I am of hearing “nowhere does it say that life is fair?”  As painful as it is to admit it, those words are true.  The harsh truth of it is, bad things happen to people, both the good and the bad.  Good things happen to the bad as well as the good people. 

Those of us who are dealing with a devastating illness that holds no promise of improving, can get pretty angry and very bitter.  When we do, we begin the search for someone or something to blame.  If we can find a genetic source, we blame those who provided the gene pool from which our Loved One came.  We can search the Internet and the journals and all the information we can locate to see if there is some environmental factor.  Then we look for whoever may have put the toxin in the environment. 

Sometimes we search for something we or our Loved One has done, some lifestyle cause.  If we  happen to believe in God, when all else fails, we blame God.  Oddly, if we do not believe in God, we use the terrible, unfair, devastating disease to prove that God doesn’t exist.  When we are at a complete loss to explain why whatever it is has come into our lives, we often cease to be rational at all.  It is God’s fault and we will punish God by not believing in God.  If we do not or have never had a religious dimension to our life, we are just angry at the meaninglessness that is intruding into our short stay on this planet. 

What I will say next sounds silly, stupid, shallow, and without any value in helping us cope.  Stuff happens!  You have seen the bumper sticker with more crude language.  Stuff happens!  Whether you happen to have a theology or no theology, faith in something or in nothing, stuff happens. 

If you are convinced there is nothing that exists other than what we can see, measure, or extrapolate from what we can see or measure, then having Parkinson’s or ALS or Diabetes or MS or Lewy Body Dementia or Alzheimers, or Huntington’s or whatever comes is just a fluke of nature, with no meaning. 

If you believe in God, however you define or confine that God, finally, the same is so.  Any God powerful enough, of such  magnitude as to be able to bring a universe of immeasurable size into being, containing powerful forces that could snuff us out in a millisecond – however personal that God may be to you, there is no way to begin to have the perspective of such a God to actually find an explanation that fits into our little minds. 

We cannot answer the question why!  It is a waste of precious time and energy.  We can find our way to the most intelligent human on earth, the most sophisticated computer, the most trusted theologian, the wisest guru, and we will not find the answer to the question, “Why, why me, why us?”

Here is what we can do.  We can look and listen, think and read, talk and ponder all the dynamics of what we are experienceing and do two things: One, learn something.  Don’t waste the pain, the struggle.   Learn something from it.  Two, use every ounce of creativity and information available to do things that use absolutely to the fullest everything you and your Loved One are still able to do — while you can do it.  Put those two things together, and you just might make some discoveries that add to the quality of your life. 

Battle the truth of your situation as if it should not be true, cannot be true, must not be true, and bitterness, cynicism will fill your days and  your relationships; the capacity to find joy and meaning in life will disappear. 

After the hospital stay precepitated by Mary Ann’s congestive heart failure, and the heart attacks and angioplasty and stent, followed by another stay for heart problems, followed by the life threatening pneumonia, followed by the stroke, followed by the Dementia, all emerging after years of battling the Parkinson’s, it dawned on me, that I never really felt that it was unfair that so many things came, one after another.  Fair is not a reasonable expectation.  Just because one thing happened to us, did not mean that we were any more or less likely to experience any other problem (except those of course that are a direct consequence of some current debility). 

No one is punishing us.  We are no better or worse than anyone else.  Things happen.  For us, when they happen, they become opportunities to learn, create solutions, develop mechanisms for finding meaning and fulfillment in what is so.  It is just so.  We can’t explain it or understand it or change it.  We can, however, choose to live in spite of it. 

I wonder what battles you have fought trying to come to terms with what is going on in your life as you deal with what has come your way.   Who do you blame?  At whom do  you scream when you are at your wit’s end?  Where do you turn to try to make sense of what your are going through?

 

March 19, 2009

Caregivers: Is It Okay to Whine or not?

Posted by PeterT under Daily Challenges, Help from Others | Tags: , , , , , , , , , , |
Leave a Comment 

One of the issues in the matter of keeping friends is, how much we should whine to people about what we are going through.  People don’t understand unless they have done it.  They just don’t understand.  People get tired of hearing about what we and our Loved Ones are going through.  It is hard to understand what it is like for every need of someone else, from the  tiniest need to the most serious need to have total priority every moment, waking or sleeping.  Their tiniest need trumps our biggest need.  After all, she has Parkinson’s.  She didn’t choose to have it.  It just happened.  She can’t pull the covers over her or turn over in bed or get the last of the Cheerios to her mouth without them sliding out of the bowl on to the table.  It is not her fault.  It is just so.  Her needs trump my needs, the needs of the very one on whom she depends for her daily survival.  The truth is, no amount of explaining or whining can give someone the full weight of something they have not experienced. 

You know the story.  Some of the people you have counted as friends come with words of sympathy when the diagnosis is made.  Some hang in there for weeks and months and even years.  Some surprise you with their willingness to help.  There are those who will offer to do things you would not have thought to ask for until they offered.  And then sometimes, after a while, they just seem to tire of it — take for granted that the two of you will manage.

As I write this, I have to admit that we are spoiled — really spoiled.  In the past seven or so years, when we have struggled the most, as many as sixty-five Volunteers have helped us.  Very many of them came in shifts, two or three hours at a time to be with Mary Ann at our house, to talk with her, help her get around, get food for her, assist her with her personal needs, read to her, take her out for a stroll in her transfer chair. 

Yes, Volunteers have dwindled over the years as they have gotten older, their own families have come to need them, and/or Mary Ann’s needs have exceeded their ability to care for her.  When I retired last July, a few decided to continue to spend time with Mary Ann, even though I no longer need to be gone from the house sixty some hours a week to serve them and their families. 

Those Volunteers have come to be friends, especially Mary Ann’s friends.  There is no need to whine to them.  They are in our home and very much aware of the demands on a full time Caregiver.  We have been and continue to be spoiled. 

The question is, how much should I say to others when they ask how we are doing?  What do you say, those of you who are doing Caregiving?  People care, but when they ask, often they don’t really want to know.  They don’t want to hear it again.  What do you say to them?

The trouble is, those of us who are full time Caregivers have pretty much one thing to talk about.  To sit down and actually read a book, or even an article more than a few paragraphs long is virtually impossible when the needs come every few minutes, when taking eyes off that Loved One can result in some sort of crisis happening before it can be averted.  There is little chance to pay attention to anything else.  A Rodgers and Hart song, “Johnny One Note” describes us whining Caregivers.  It is no wonder friends sometimes begin to drift away. 

What can we do about it?  It seems to me that there is a simple truth that offers the key to keeping others in our lives.  Care about them.  We need to ask them how they are doing and mean it.  We need not to trivialize their problems, even though ours may seem to make theirs seem to be of no importance.  Their problems are important to them, as important as our problems are to us.  We can become so immersed in our seemingly impossible situation, that we can see nothing else. 

It seems to me that we actually have a unique set of skills taught us by the most difficult situations we have faced.  We actually can understand what many others don’t.  We can be exactly the friend others need.  Yes, sometimes we are shocked at how petty some of the problems others see as so important are in comparison to ours, which far exceed theirs in that great metric in the sky — at least in our eyes. 

One of the great gifts available to us are groups, support groups, on-line groups.  (Find them by Googling the name of the disease in  your household, adding the words “support groups.”)  There we can whine to our hearts’ content.  There we can find people who understand exactly what we are going through.  Whine there, not to every acquaintance who dares to say, “how are you?”  It is no wonder we sometimes lose friends.  We want them to prove that they are friend to us by listening, understanding, sympathizing, offering to help, but we are unwilling to be friend to them. 

What sort of friends do  you have?  How do they help you?  What do  you say to them when they ask you how you are, how your Loved One is doing?  In what ways are you friend to them? 

Is it okay to whine or not?  What do you think?

 

March 14, 2009

To Cry or Not to Cry

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

Whether the reason is lurking somewhere in my DNA, those double helixes containing the code that tells the cells in my body where to go and what to do when they get there, or in subtle messages from Dad (he didn’t talk much) as he showed me what to do with my feelings (don’t show them), I did not end up able to cry very much.  Mind you, I can tear up at a sappy movie.  My lip will quiver when I am overcome with emotion, but really crying, sobbing, is a very rare experience for me.   There was the time my Dad died, the day our daughter left for college (our Son contends this is just more evidence that we liked her more than him — gratefully, she is convinced we liked him more than her — we must have done something right).  There was the time after six sleepless nights in Mary Ann’s hospital room that I broke down, sobbing, in my Son’s arms.  I cried when we buried good friend Al.  I can count on one hand the times I have really cried. 

I am a member of an online group for those caring for spouses who have Lewy Body Dementia (check www.lbda.org for information on joining).   Parkinson’s Disease Dementia is a Lewy Body Dementia.  There is an understanding of confidentiality in the group.  I suspect no one will mind my sharing one of today’s topics.  Someone asked for suggestions for “music to cry by….”  Please understand that very many of these brave folks have given themselves completely to the care of Loved Ones who need them constantly.  Lewy Body Dementia (LBD) is a particularly insidious form of Dementia.  Symptoms can come and go from one minute to the next with no way to predict when they will do so.   I can only hope I will muster their courage when our journey takes us where so many of them are or have been. 

The songs suggested had names like, The Days of Wine and Roses, Because of You, The Way We Were, If Tomorrow Never Comes, Blue Eyes Cryin’ in the Rain, Through the Years, You Were Always on my Mind, I Still Miss You, After the Lovin’, And I Love You So, and dozens more.  I was struck by how many could respond immediately to the question, “What is music to cry by….”  The posts just kept coming. 

Then came a few who asked (I paraphrase), who needs music, I can cry any time, just stopping to think brings tears.  It would break your heart to hear the litany of impossible challenges these people endure, some for decades.  Yes, there is a time to weep.  We are made of water, mostly.  Sometimes we need to just spill some of it before we explode.  I suppose that is what tear ducts are for.  No, it doesn’t change our circumstances when we cry.  It changes us, our chemistry.  Strangely, it seems to take us close to the place from which laughter comes.  When spending time with grieving families, listening to stories about the one who died, the laughter and the tears seemed to live right next door to one another.  Both seemed to have healing power.

But what of those of us who don’t do well at crying?  We need to find our way to a mechanism for releasing whatever it is, whatever healing it is that tears and laughter can provide.   My insides can be stirred by a Bach Passion, or Russian liturgical music, or Ralph Vaughn Williams, or Poulenc, or Widor, or Telemann, sometimes Enya or the Celtic Women or Hammer Dulcimer music.  For me, these past few days have confirmed that my release is to be found in thoughts put into words.  My life’s work has revolved around talking.  Now that we are mostly at home, today was a day of sleep for Mary Ann (one of the transitory symptoms of LBD), there is no one to listen.  So, here I am, making words, my version of crying and laughing and healing.  And you who dare to enter this Internet domain are my therapists.  (Please do not bill me!)

 

March 13, 2009

Care Receiver Feelings

Posted by PeterT under Meaningful Caregiving | Tags: , , , , , , , , , |
[3] Comments 

So, how does she feel?  How does Mary Ann feel?  How does she feel that she needs to push a button to be able to do the simplest of things?  I asked her.  Understand, Mary Ann does not talk about feelings.  Mary Ann doesn’t talk much at all.  It is often hard for her to gather her thoughts and put them into words.  In fact, sometimes she is convinced that she has said what she was thinking when nothing at all has come out of her mouth.   She wonders why I am asking her again. 

How does she feel?  One of my jobs is to determine what she is feeling by assessing the elements of the situation, by remembering how she has reacted in past to similar circumstances, by looking at her face, by noticing her body movements, trying to find my way to what she is thinking, but not saying. 

How does she feel?  This time I just asked her.  I asked her how she feels when she presses the button.  It was apparent that she was trying to think of a way to respond but struggling to get to the thought and the words.  I formed the words for her so that she could answer yes or no. 

One of our barriers to communication is my unceasing need to ask either/or questions.  “Do you want a Turkey and Provolone sandwich, left over pasta, or scrambled eggs for lunch?”  “Yes.” she responds.   “Which?” I say.  Her next response?  Silence.  Was her “yes” to the first of the three, just a little late in coming?  Was her “yes” to the last one of the three?  Actually, she is bored with the default lunch setting, Turkey and Provolone, Fritos and a Pepsi.  Leftovers are by definition unfit for current consumption and an offense to Mary Ann’s palate.  It must be the scrambled eggs — my last choice since it means actually using a major kitchen appliance (the one with burners and knobs rather than the one with the little door and buttons). 

I read a book called LIfe in the Balance, by Dr. Thomas Graboys.  He has Parkinson’s and is moving into Parkinson’s Disease Dementia (a Lewy Body Dementia).  Some parts of his book could have been written by Mary Ann.  The part that sticks firmly in my mind is his description of trying to communicate.  He struggles to find the words, put them together, and get them out of his mouth before the time has long since passed for his reply to be relevant to the conversation. 

I have learned that communication works best when the question is a yes or no question.  I have learned that trying to intuit what she is thinking, then saying the words and asking, “Is that what you mean?” allows at least the possibility of finding our way to the thought in her mind that is seeking release. 

So this time I simply asked her, “How do you feel when you press that button to call me for help?”  I formed a couple of answers, “happy that I am coming to help, unhappy that you have to bother me, or some of both?”  (I did it again, an either/or question!)   Seeming to discern some non-verbals when I said “both,” and expecting that to be the answer, it was clear to me that the “yes” was to, “both?”

Apparently, she, too, has a love/hate relationship with that little electronic doorbell.

 

« Previous Page