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 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 17, 2009

Caregiver/Receiver Denial is Underrated!

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

When I was little, before toys had been invented, my imagination was the primary source of entertainment.  With my imagination, in the living room, I could make a store of chairs with corn kernals and toilet paper rolls and all sorts of treasures that were laid out on each chair as the merchandise.  Yes, I have a bit of the entrepeneur in me.  I would sit on the floor in front of that little ivory colored table model radio off in a wonderful world of adventures, The Lone Ranger, Gang Busters, The Shadow, Sky King, Sargent Preston and his dog King, The Green Hornet, Superman.  

I cannot describe to you the magnitude of my disappointment when The Lone Ranger came to television.  Who was that skinny little man and his tiny horse who claimed to be the Lone Ranger and Silver?  No human actor could measure up to the Lone ranger of my imagination.  I liked the world of my imagination.  It was exciting, filled with possibilities not limited by the harsh realities of being a kid with Rheumatic Fever who wasn’t supposed to do anything that would break a sweat.  My brothers and sisters with whom I now enjoy a wonderful caring relationship in spite of the miles between us, my brothers and sisters were out of the house and on their way long before I headed off to college.  For all intents and purposes I was an only child, who spent lots of time in a world of my own making. 

I liked that world.  In that world I was whole and fulfilled.  In the other world, the one at school, with the other kids, the one in which I was measured by Dad’s expectations, teacher’s expectations, strata determined by others — most of whom came from far more affluent families than mine — in what some call the “real” world, I was not worthy of notice. 

You know, reality is not all it is cracked up to be.  Yes, I am short and chubby and forgetful and often given the Senior Discount without asking for it.  On the inside, I am snappy and hip and sharp and with it and young and sexy.  You wonder why I contend that denial is underrated? 

Let me tell you what I think Mary Ann feels about this denial business.  For the first five years after diagnosis Mary Ann refused to let me tell any but a couple of conficants that she had Parkinson’s.  In fact she was not convinced she had it.  If I were to press her on the matter, some twenty-two years later, I think she might just suggest that maybe she doesn’t really have Parkinson’s. 

When Mary Ann says, “they won’t let me in the kitchen any more,” I think she means, I could do it — I could chop those vegetables, wield sharp knives, and handle those hot pans just the way I did when “they let me in the kitchen to cook.”  (Yes, I am the “they.”) 

When Mary Ann hops out of that chair and heads off for whatever, I think in her mind, she does not have Parkinson’s, she will not faint due to having Orthostatic Hypotension (fainting due to low blood pressure — a mysterious combination of the disease process and side effects of meds).  

I am convinced that it is her denial that has kept her alive, fueled the feisty stubbornness that has brought her through heart attacks, clogged arteries, congestive heart failure, a life-threatening bout with pneumonia, a stroke.  As far as she is concerned there is nothing wrong with her but limitations put on her by a bunch of worry worts (most named Pete). 

Back to the Lone Ranger.  I liked the Lone Ranger of my imagination better than the one using an ordinary human actor, limited by reality.  While it frustrates me when I am trying to help Mary Ann stay safe, avoid trips to the hospital, keep alive, I think denial is a necessary tool for daily survival.

Let’s be straight about this.  Every time Mary Ann is in bed and very quiet, a little voice tells me to listen carefully to be sure she is still breathing — that she hasn’t died.  Every time she gets up to walk can be the last time.  She can faint or lose her balance and hit her head on something.  Head injuries are one of the most common causes of the death of someone with Parkinson’s.  Yes, this is part of our reality.  We have been to the emergency room.  I have had to call the children to come from other parts of the country, told that she might not survive the night.  We have been told twice that she was within a hair’s breadth of going on a ventilator.  Yes, Parkinson’s Disease Dementia (a Lewy Body Dementia) has begun and is likely to get worse until she does not recognize me or the children.  Yes, she may choke on her food (aspirate it into her lungs) and not survive.  Plaque might break loose from that rough surfaced lesion in her carotid artery.  A clot might form due to inadequate heart function — a clot that could take her in seconds. 

That is reality.  Is that how we should live, facing reality moment by moment, immersed in the truth?  Hell, no!  (Excuse my French, as they say — please don’t be offended if you happen to be French — Mary Ann is.)  The way to live is in denial!  Every day when we get up, we are as alive as anyone else.  We have things that need to be done that are shaped by our circumstances, but we are as alive as we were yesterday and as we expect to be tomorrow.  Don’t feel sorry for us or patronize us or suggest that our quality of life is any less than anyone else’s.  We love and feel and dream.  We are filled with the beauty of spring flowers and blue skies with puffy clouds.  We draw in the wonderful scents after a rain, we eat ice cream voraciously.  We cherish friends.

That is the reality in which we choose to live.  In our denial, we are not foolish.  We do what can be done to ready ourselves for things that are likely to come.  We have purchased our burial plots.  We have written down our preferences for funeral services.  We have chosen to live in a maintenance-free (hardly free) home.  We have enlarged doorways for wheelchair and walker.  We have purchased a lift for times I am unable to get her up.  We have checked out options for future care.  We have living wills and durable powers of attorney.  We are not stupid.  We acknowledge reality and deal with it.   We just choose not to live in it day by day. 

Give me the bigger than life Lone Ranger I saw in my mind’s eye, as I heard his booming voice with with my mind’s ear say, “Hi Yo Silver, Away.”

You can have Reality.  Mary Ann and I choose Denial.

 

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