The toast was just out of the toaster with a little Mayo on it.  The Provolone and smoked turkey had come from the fridge.  The bacon was warm from having just been cooked to just the right crispness in the microwave.  The sandwich was still sitting in front of her, untouched, after I had made some more bacon and toasted a slice of bread, topped it with butter, peanut butter and jelly for my own supper.

I asked what was wrong — why she had not touched the sandwich sitting in front of her.  She said it was frozen.  There was another time not too long ago when she said the same thing about a sandwich I had made for her.  Of course I did the opposite of what should be done when hallucinations mix into reality.  I complained in frustration as I took it to the microwave to heat it up for her.  I complained that I have no power to fix what isn’t there — it was impossible for it to be frozen.  When I asked what led her to believe it was frozen, she said there was ice on it — again, impossible.

While I should be past letting these things cause frustration, it is true that it is impossible to fix what doesn’t exist.  It is already using up all my coping skills dealing with what is real.  Dealing with the challenges all day and all night (sometimes) creates a very thin veneer of equilibrium.  My frustration came and went in moments, and Mary Ann ate about a quarter of the sandwich — followed by a cookie (no wonder she stays so thin even with trips out for ice cream).

Today also included lots of trips caused by some intestinal activity — not always making it in time.  Gratefully, the disposable underwear makes that occasional incontinence easier to handle.  This was a day the role of waste management was exercised.

One of the complications was that the esophageal spasms flaired up today.  When they come, there is much discomfort that lasts for hours.  This attack lasted most of the day.  I have been to the Gastroenterologist and been tested in every way known to humankind.  There is pretty much no real explanation and no treatment.

One of the routine challenges of any Caregiver is the need to continue to deal with the needs of another, no matter how small those needs may be, even when the Caregiver is sick and in pain.  It just comes with the territory.

Since last night was not a particularly good one in terms of uninterrupted sleep, we were both tired.  As a result, Mary Ann napped for a long time, and I vegetated, trying to ride out the spasms.

Mary Ann is in bed now and seems to be sleeping.  I will, hopefully, not be far behind.  I am sure she will need one or two snacks during the night since there was little consumption of food today.

Two updates:  No raccoon visitation last night either.  We will see what tonight brings. The other update is that I have managed to avoid any exercise walking the last two days.  Tomorrow is another day.

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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?