She watched the director, knew the music, sang with her mouth open wide just as she should, and brought some joy to her Grandparents (and, of course, her parents).  This Grandpa loved every minute, since singing was in the center of my life during most of my first two decades of life, and has remained a love until now.

We drove a little over an hour to the church at which Chloe’s choir performed.  Her other Grandparents made a trip more than twice that length to come to the concert.  The choir is sponsored by the University of Missouri, Kansas City (UMKC). Auditions are required to be able to sing with the choir.

Then logistics needed to accomplish the day’s activities were not always easy.  Churches try hard to be accessible for the handicapped, but old buildings often will simply not cooperate in the task of becoming welcoming.  We thought it wise to make a bathroom stop before the concert.  There was an accessible bathroom inside the ground floor doors near a handicapped parking spot.  The doors were locked to force the attendees to use a door that would allow entry to the room from the back.

Gratefully, we got the attention of then attendant who let us in and waited while we used the restroom.  The need to change the pad due to incontinence resulted in removing shoes that are difficult to get on and off.  We used an elevator to get to the floor on which the concert would be held.  As a result of the time spent in the bathroom, we barely made it in through a door in the front of the room, the same door through which the choirs entered.  We were directed to the indentation in the pews for wheel chairs, but all the seats around it were filled.  Gratefully, a family offered to split up with Dad moving the pew behind so that I could be right behind Mary Ann.

After the concert, to get to the reception area, we had to return the same way, take the elevator to the lower level, pass through the kitchen, and then arrive at the reception area.

Before the concert, we ate out together.  The handicapped parking spaces were a block from the restuarant.  To get to the booth, we had to go through the serving area.  Booths are always a bit of a challenge.  Ordering was pretty difficult, as it always is, since a compromised executive function of the brain is among the first of the problems to emerge with Parkinson’s Disease Dementia (Lewy Body Dementia).  She really struggled to track and then decide what to order.

Again, getting the food to her mouth, coordinating the straw so that she could drink did not go very well.  Then twice, she just fell to the side. [See an earlier post on leaning to the left.]  After the second time, I moved from sitting in the chair that had been added for me, to sitting right next to her on the booth bench, with my body supporting hers.  When we ate at BoBo’s earlier in the week, she had fallen to the right twice while sitting in the booth.

After the concert we had a nice time with the kids at their house, along with Daughter-in-Law Becky’s parents.  Mary Ann was sitting off to the side a bit since she needs a hard, straight-backed chair to keep from being trapped in the chair, unable to assist when she needs to get up.  I stood near her so that the conversation would include her, even though she said only a few words.

I need to ask the kids to confirm, but today seemed to indicate that Mary Ann has lost ground in the recent past.  I am beginning to accept the possibility that this is just the way it is now — that we have moved to a new normal.

When we left their house, we headed down to see the Plaza Lights.  Kansas City is a beautiful place for the most part.  The Country Club Plaza, built in the 30’s with all the buildings done in Spanish Architecture, is a wonderful spot.  There is a huge fountain on one end.  There are parking garages built with the same architecture.  There are horse drawn carriages, people walking the sidewalks.  There are lots of exclusive stores, most having very expensive merchandise.  The lights outline all the buildings and have been put up from Thanksgiving through Christmas for many decades.

We lived in an area a mile or so south of the Plaza for fifteen years.  Our children grew up there.  It felt wonderful tonight to be driving those same streets that had become so familiar.  I realized how much I miss the feel of a metropolitan area that has people walking about, families, young people, folks out walking their dogs, local ethnic restaurants, curved streets, tall trees everywhere.  I guess we just fell in love with Kansas City during those years there.  As we drove, Mary Ann admitted that she would still like to move back to KC.  There are a number of reasons that pretty much eliminate that option, but this is not the first time she has said that.  One of the reasons moving back is unlilkely is that the house we bought for $22,500 in 1972 was on the market a couple of years ago, listed at $310.000.  What is it they say, “location, location, location.”

All in all, today was a good day.  While there were signs of Mary Ann’s apparent decline, the joy of getting out, hearing Chloe sing, enjoying conversation, and seeing beautiful Christmas lights more than compensated.

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.

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The meal was good.  The eating was not.  Mary Ann got some food eaten, but not very much.  She would let me cut the meat and break the dessert’s crust into bite-sized pieces, but, again, she would not let me help her by feeding the food to her

This public place was tonight’s Parkinson’s Support Group Holiday meal.  Since everyone there is either a Caregiver or the one with Parkinson’s, I hoped Mary Ann might be more willing to allow me to help.  Not so.  The meal was catered by folks who do a nice job on the food.  They also had extra servers, more than would normally be needed when using a serving line.  The extra servers helped those of us who were trying to carry plates for two and those whose dexterity is limited.

We sat across from former parishioners that we have known for many years.  He has had Parkinson’s much longer than Mary Ann.  We enjoyed the various conversations. I guess to be more accurate, i enjoyed them.  Having retired from a profession filled with hours of converations and interactions with others, retirement has put a crimp in my opportunities to talk with folks.  As a result, when any opportunity arises, it is hard for me to shut up!

While I always tested very well in the quanitative portion of the standardized tests, the verbal scores were not quite as high.  That seems pretty odd to me since my life has always been about words.  I always loved words.  I used them to get out of fights with bullies (it helped that when I was in elementary school I was among the tallest and strongest of the kids  — I am still the same height I was in the Sixth or Seventh Grade).  I loved learning to use big words, always making sure I used them correctly.  Some people express their sadness with tears, their anger with violent actions, their frustrations by acting out, their happiness by shouting for joy, I talk.  I think and analyze and process and then frame the feelings with large quantities of words that help dissipate the pent up nervous energy created by the feelings.

At the same time, I love solitude.  I can spend hours just soaking in everything about the moment and the space I am in and the thoughts that fill my mind, often bumping up against one another.  I love the periodic retreats that provide almost three full days of utter solitude, walking, watching the wildlife, gazing at the clouds, smelling the scents, reading, thinking, journaling.

I guess what precipitated the above diversion from Mary Ann’s challenges  to my love for words is the fact that I need the time out with others more than Mary Ann does.  It is part of my therapy.  I am usually pretty ambivalent when outings are approaching, wanting to stay home to avoid the hassles associated with going out.  But when I get to the gathering, I thoroughly enjoy the interactions and conversations.

Back to Mary Ann’s struggles with eating.  When I asked Mary Ann about lunch today, she said she wanted BoBo’s for lunch. The Food Network’s Diners, Drive-ins and Dives did a special on BoBo’s.  We didn’t really have time to go into the diner to eat (it is the size of a postage stamp), so we got take-out from a drive-in stall.  I have to admit that it was a bit of a relief that we did not have time to go in.  One reason is that I wanted to eat the food we already have in the fridge (my frugal streak).  The second reason is that I have a hard time watching Mary Ann eat when the soft fish sandwich with tartar sauce is squishing through her fingers, dropping on the table, her clothes and the floor.  There, I said it!  I am ashamed to admit it.  Here she is struggling to deal with all she has been through, just trying to enjoy food that brings her pleasure, and I am so petty as to let a little messiness disturb me.

If we had had time, we would have gone into the diner to eat.  At least I usually don’t let my aversion to the messiness keep me from taking her out to whatever restaurant she chooses.  I am trying here to salvage a little positive self-image after admitting to such pettiness!

Mary Ann slept well last night — good for both of us.  She went to bed a little late tonight.  Let’s hope for a night filled with sleep!

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.

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.

I’ll bet you wish you had seen hundreds of Wilson’s Phalaropes swimming in little circles at a dizzying rate of speed, a White-faced Ibis, lots of Black-necked Stilts, a bunch of cute little Semipalmated (not fully, but only semi-palmated) Plovers, very many American Avocets and Hudsonian Godwits, not to mention the White-rumped Sandpipers and the Scissortail Flycatcher — all this along with forty-eight more varieties of birds.

I got a day off yesterday, and so did Mary Ann!  We both had a great time.  I spent the day birding with an experienced birder, a new friend that I now call Bob, and Mary Ann spent most of the day with our Son, Micah.

Arranging a day off is no small task for a full time Caregiver.  Those routines that provide the structure to the day and provide assurance that everything that needs to be done gets done, are not easily explained to someone who does not do them on a daily basis.  To write down instructions for all the routines and appropriate responses to the variety of situations that might arise would be almost impossible.  It would read like the instruction manual for a computer program.

To have a day off, I needed to have enough confidence in Mary Ann’s safety and security that I could let go of any concern, relax and enjoy the day’s activities.  There are pills to be taken, a medicine patch to be replaced, a wound to be dressed, bathroom needs to be dealt with, food to be provided, a commode to be cleaned out, maybe a shower and/or hair washed.  There are endless possibilities for problems to arise, from falls to heart pain to fainting spells.

I was able to relax completely.  Here is why:  For the last years of my ministry, we had an agency provide a paid person to do Companion Care with Mary Ann for three hours from 6:45am to 9:45am on Sunday mornings.  That was a time that it was not appropriate to ask a Volunteer to serve.  We have used two agencies mainly.  One is called Comfort Keepers and the other Home Instead.  Both are very good.  The one we have used most recently is Home Instead.  For the last couple of years of ministry, Debbie came each Sunday morning.  She became very familiar with the morning routine, including shower and hair washing, dressing, taking meds, providing breakfast, cleaning the commode and dealing with the fainting spells should they happen.  Debbie was available yesterday for the early morning shift. The cost is about $16 per hour.  It is worth the sixty dollars that it will cost to have her there, to have a day off for both of us. (Home Instead: http://www.homeinstead.com/; Comfort Keepers: http://www.comfortkeepes.com/)

For the evening three hours, Margaret was willing to come.  She is a very good friend to Mary Ann, as well as the Parish Nurse for our Congregation.  She has all the skill and experience anyone could ask for.  She has taught nursing for decades and, while retired, still keeps active, serving on call as a home health nurse for a local hospital along with serving full time as Parish Nurse — volunteering her time in that role.

During part of the afternoon, until a virus laid her low, Edie was going to spend a few hours.  She is also a good friend to Mary Ann and has dealt with everything right up to calling the ambulance to take her to the hospital when it was needed.

The best part of all was that our Son, Micah, was able to come from 9:30am to 6:30pm to be with his Mom.  Our Daughter-in-Law, Becky, and Granddaughter, Chloe, were on a Girl Scout campout this weekend.  That freed the time for Micah to come.  For a Mom to have her adult Son to herself for a full day is a treat beyond description.  Micah always brings out the best in Mary Ann.  She was alert and able to communicate.  They talked on the phone with our Daughter, Lisa.  They played some Scrabble.  Needless to say, the game only went a two or three rounds, but Mary Ann managed to come up with some of the words on her own.  She used to be merciless in playing Scrabble with the Volunteers.  They knew they were in the presence of greatness.  Micah took her outside for a trek to the nearby park, looking at flowers and enjoying the weather as he wheeled her along.  They ate some leftovers and then later headed out to get a milkshake from Sonic.  Micah and ice cream too!  Can’t beat it!

One of the special benefits of the day were the bits and pieces of conversation that Micah had with his Mom.  He got to have her at her best some of the time.  He experienced some of her hallucinations.  There were some times when she was not tracking, but much of the time she was.  While their conversations were between the two of them, one interaction that Micah shared was very revealing.  She wondered if it was not so that once a person needed to be fed, they would have to go to a nursing home.  He assured her that as long as there was someone at home willing to help, that was not so.  She has in recent days begin allowing me to help her with food, even in public.  That need must have been a great concern to her, carrying with it in her mind powerful implications.

As I processed the day, one thing popped into my mind when thinking about how good the day was for the two of them.  Mary Ann and I have enjoyed hopelessly spoiling our Granddaughter Chloe when she is with us before returning her to Micah and Becky to deal with the aftermath.  Turnabout is fair play, as they say.  After a day of Micah’s full attention, entertaining her and enjoying her every minute of the time he was there, I have to deal with the aftermath!

If there will be a Caregiver’s day off (as well as a CareReceiver’s day off), there are all sorts of things that need to be done over a period of time to allow it to happen.

For one thing, we had developed a relationship with an agency, using it on a regular basis, if only for a short time each week.  That way the option was available and familiar.  We  had already developed the booklet with all the pertinent information if any problem should arise.  (See this blog’s March 29th, 2009, post titled “Caregivers’, Carereceivers’, Volunteers’ Safety Issues” for more information on the booklet.)

We had allowed some good people to spend time with Mary Ann over the past eight or nine years, providing a cadre of people to call on, people comfortable with her, experienced in dealing with a variety of contingencies.

We planned the day far enough in advance to allow for the scheduling needed so that it could actually happen.

It was helpful to make a commitment to the day and to make the commitment to another person so that the motivation to follow through would be there.  It surprised me that I was ambivalent about going as the day approached.  I realized that as I have settled into the role of full time Caregiver, the role has come to provide a certain comfort and security.  I was apprehensive about being away for the day.  I have come to find meaning in what I do here to the extent, that it was a little uncomfortable to think of being away from that fulfilling task.

The day off was good for both Mary Ann and me.  We had a chance to be ourselves, each separate from the other.  It was reassuring that we both had a very good day. That the day went well encourages us to do it again some time in the future.  It took lots of planning, but it was worth the effort.

Caregivers, take a day off! It will do both of you a world of good.

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.