It was a perfect time to be on the deck.  The temperature was in the high 70’s and there was a breeze blowing.  There were some hazy clouds occasionally filtering the bright sunshine.  The deck was partly in the shade and partly in the sun.  The sound of the splashing waterfall echoed providing accompaniment to the raucus squawking of Grackles and Blue Jays.  I read and thought and pondered and read and pondered some more.  It was a wonderful couple of hours.

I got Mary Ann’ s breakfast and pills done; then showered, shaved (yes, even though I wear a beard), and dressed.  The plan was to head to the grocery and then out to eat.  She stood up from the transfer chair for a moment and flopped down into it.  Whatever the switch is that turns off her ability to function, it switched her off.  The plan dissipated and a long nap ensued. 

Adapting quickly to a change in plans has never been easy for me.  If I got into my mind what we were going to do, frustration was my usual response to being derailed, a disabling frustration, leaving me grumpy and annoyed.   Today, video monitor in hand, I just headed out to the deck and had a great time.  In some ways I am learning to cope with the vagaries of the Parkinson’s Disease and Parkinson’s Disease Dementia.

When Mary Ann awakened from her nap, I got her dressed and ready to head out for lunch.  When we started the often endless task of picking a place to eat, she popped up with one we had not been to in years, Red Robin.  It seems to cater to the younger crowd, with a sort of boisterous atmosphere and very expensive burgers. 

I was happy that a decision came so quickly.  I mentioned the possibility of splitting a sandwich since they are large and costly.  I remember the first time we ate there.  It had just opened and there were lots of folks waiting for lunch.  Our name was on the list, but it seemed that others who had come after us were being seated.  I went in and asked why we had been waiting so long.  Somehow our name had been skipped.   As we were being seated, a manager came over and said that because of the long wait, lunch would be on them.  That was music to these frugal ears (big, but frugal).  Giddy with the thought of it, I decided to buy a beer, a Black and Tan (Guinness and Bass in the same glass).  As I was enjoying my beer, a bartender came by with a Black and Tan looking for the person who had ordered it.  He concluded that there had been some confusion, and I might as well have it.  While I just couldn’t manage to get two full beers down in one sitting (college days are over), it felt sort of luxurious to have them both sitting there for me to enjoy.  We had just had two full meals, a Coke for Mary Ann and a couple of imported draft beers for three dollars and change.  Yes, I did leave a tip based on the full price had we paid for the meals. 

This time we weren’t so lucky.  We got seated right away.  I had talked about our splitting a burger before we went in.  Then as we looked at the menu, both interested in the Salmon burger (made with a Salmon filet, not a salmon patty), I asked Mary Ann if we should go ahead and split the sandwich.  She always eats half and we take the other half home.  The burgers at Red Robin are between ten and eleven dollars each.   She said no.  It surprised me, since her normal response would have been yes.   I asked again just to be sure I hadn’t misunderstood.  She again said no. 

We ordered the two meals.  She finds it easiest to eat a sandwich if I cut it in half, and then cut the half in half again.  A quarter of a sandwich is about all she can manage to hold with her hands.  The fingers stiffen and lose dexterity when she is trying to hold on to something.  When she was working on the second quarter, she said, “I thought you were going to eat the other half.”  I am not sure exactly what happened that we miscommunicated so badly.  Red Robins are particularly noisy, and Mary Ann’s voice is very soft due to the Parkinson’s.  Most of the time I end up reading her lips when we are communicating in public, or in the car (can be challenging when driving).  It was annoying to think that we were paying eleven more dollars than we needed to, but I have come to be better at accepting and adapting.

One thing, however, that I cannot seem to accept, to which I struggle to adapt, is the messiness that goes with the dexterity problems.  I find it very hard to deal with my reaction to seeing the sandwich squeezed in her hand until most of it falls on the table her lap or the plate, sauce running through her fingers and down her arm.   Notice that what is hard to accept is not the messiness, but my reaction to it.  The reaction is internal.  My actions were attempts at helping her get the sandwich pieces back in her hand, suggesting she use the fork, then afterward cleaning her hands with napkins and a wipe from her purse.  I know she was uncomfortable with the cleaning I did, since it seemed that she was looking around to see if anyone was watching.

The messiness bothers me more than it does Mary Ann.  Part of it is that I happen to have grown up in a family with a Dad who was meticulous about eating habits.  Part of it is that Mary Ann doesn’t have the view that I have from across the table.  She is focused on getting the food into her mouth.  I see what doesn’t get there. 

Mary Ann did not choose to have limited dexterity.  All she wants to do is eat.  She does what is necessary to get that task accomplished.  My struggle is not with her messiness, it is with my inability to just take it in stride and ignore it.  I am self-conscious for her, when she is not.  I am embarrassed for her, when she is not.  It is hard to admit this, since she is the one living with the Parkinson’s and its impact on her ability to simply enjoy a meal.  I feel very petty.  In this regard, she is healthier than I am.   At least I have the sense not to allow my feelings to stop us from going out.  

Anyway, when we go out to eat, I don’t have to cook and clean up.  With that payoff, bring on the messiness! 

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.

She suggested it!  “Let’s go to Braum’s for ice cream.”  Understand, the closest Braum’s is in Emporia, Kansas, an hour’s drive on the Interstate.  We usually take more scenic roads resulting in closer to an hour and a half drive time. 

Noble husband that I am, I will make the sacrifice, drive us to Braum’s, and out of the goodness of my heart join her in eating a two scoop Hot Fudge Sundae topped with salted pecans, real whipped cream and a cherry on top.  Sometimes I surprise myself with my generosity. 

Here is the rub.  When Mary Ann suggested going, it was too late in the day and storms were coming.  Thinking through that sort of information and making a decision demands using what is referred to as the Executive Function of the brain.  The mild Parkinson’ s Disease Dementia that has recently been added to the Parkinson’s Disease has dimished that particular function. 

The plan then was to go the next day.   As the next day progressed a combination of intestinal activity and fainting (Orthostatic Hypotension) flipped the nap switch in her.  I say it that way because the fainting spells sometimes drain from her the capacity to be up and about.  When the nap switch flips, it is sometimes a challenge to get her to the bed and settled there.  She may crumple to the floor wherever she is when the need for a nap hits. 

The next day included an evening activity, the Parkinson’s Support Group.  There was no moving fast enough to get the trip in before the meeting.  The day after that (yesterday) we planned to go again.  The day was completely clear other than the outing to Braum’s.  The weather was spectacular.   It didn’t happen.  It was a nap that filled the time we were going to use to make the trip.  This time it was not that the nap switch flipped, but it was the need that comes more and more often. 

Parkinson’s Disease Dementia is a Dementia with Lewy Bodies.  It patterns itself differently than Alzheimer’s Dementia.  There is a different part of the brain affected.  One of the symptoms of the progression of the disease is daytime sleeping.  Some days there have been two naps.  The usual length of a nap is two to two and a half hours.  We never know when the need will arise.

Yesterday there was no trip to Braum’s.  Today, I was determined it would happen.  I planned to add another stop along the way.  I thought phoning a friend of Mary Ann’s to come along would make the trip more enjoyable.  Jeanne and Mary Ann enjoy each other, she helps when Mary Ann needs to use a public bathroom, and since Mary Ann is barely verbal, Jeanne adds to the conversation when we travel.   She was not able to join us for the trip, but I was still determined to go. 

Again, the day was beautiful.   We ate some lunch at home.  I made some surprisingly tasty chicken salad.  Those who have read many of the posts on this blog appreciate what a remarkable accomplishment it is when I make a meal, especially one that is fit for human consumption. 

Almost immediately following lunch, the nap need arose.  By the time Mary Ann awoke, the trip to Braum’s was again out of the question.

Why bother to plan anything?

I am a planner.  I get in my mind how the day will go, what needs to be done, and varying from that plan upsets my equilibrium.  The role of full time Caregiver has resulted in the dismantling  of my daily structure. 

Caregivers respond, they do not work a predetermined plan.  Mary Ann’s needs come when they come.  She cannot fill them herself.  That is my job.   The challenge is trying to figure out how to keep from going crazy since as a Caregiver, I have very little to say about what I will be doing and when I will be doing it. 

For eighteen years of my almost forty years in ministry before I retired, I worked with Youth.  The first three years in the ministry I taught religion classes and served as a Pastoral Counselor at a large parochial high school of some 900 students.  For the next fifteen years, working with Youth in a congregation was a major part of my portfolio.  When leading Youth activities and classes and retreats, I learned quickly that there needed to be a detailed plan in place but along with that plan a willingness to throw the plan out completely if circumstances demanded it.   

That is exactly the sort of planning needed to be the primary Caregiver for someone who needs help with most everything they do — without the Caregiver going crazy.  My goal from the day I retired has been to have options immediately available so that if Mary Ann’s needs eliminated whatever we had planned, something else could be substituted. 

What that means most of the time is that I need lots of small tasks that can be done here at the house while Mary Ann is napping, or interested in a televsion program.  The hardest part of adapting to this new pattern has been gaining the ability to let go of plans I have in my mind without becoming resentful and grumpy.  In that regard, I am still a work in progress. 

Today, when Mary Ann woke up, instead of heading for Braum’s an hour away, we went to the Baskin and Robbins on the other side of town, drove by the beautiful Ensley Gardens and came home.  A Hot Fudge Sundae made with Nutty Coconut ice cream with chopped nuts, whipped cream and a cherry on top goes a long way in calming the ruffled feathers of a planner whose plans have just been frustrated. 

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.