March 21, 2009

Stuck Caregiving! What am I missing?

Posted by PeterT under Daily Challenges, Meaningful Caregiving | Tags: , , , , , , , , , , , , , , , |
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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 17, 2009

Caregiver/Receiver Denial is Underrated!

Posted by PeterT under Meaningful Caregiving | Tags: , , , , , , , , , , , , , , , , , , , |
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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.