We headed out for a ride in the lush green countryside, through bean fields, wheat stubble after harvest, freshly mown hay being rolled into large round bales, gently rolling hills as far as the eye could see.  The day was warm and sunny with comfortably low humidity.  We took our time as we traveled to Harveyville, Kansas, a thriving metropolis populated with 136 male and 114 female humans and at least a two cats.  One of the cats is huge, by far the largest cat I have ever seen — friendly, but as usual, in charge of the Jepson Pottery Studio.

The studio is filled with hundreds of finished pieces as well as many that are in various stages on their way to completion.  Owner Barry was busy at the wheel turning some unusual looking vases (I think), interacting with two of his four young adult children while he worked.

We had taken to him a dinner plate we purchased at a Medical Supply store. The plate is made of some sort of very sturdy plastic, functional, but hardly pleasing to look at.  It is obviously a plate for use by those with dexterity problems.  The center of the plate is about a half inch deep providing a wall against which the food can be pushed to get it on the fork or spoon.  Without that deep lip, the food often just slides off the edge of the plate on to the table or Mary Ann’s lap or the floor.  The plastic plate is very light, demanding a piece of Dycem (www.dycem.com/), given us by our Occupational Therapist, to keep the plate from slipping.

He made one plate for us to try.  It worked.  Today we picked up five more plates so that we will always have a couple clean for both of us to use. They look great.  Mary Ann had picked the colors, a deep red with an uneven thin blue area around the rim. The plates are heavy, so no Dycem is needed.

We had already gotten four of the chili bowls with handles made with the same colors.  Those bowls have sides high enough so that, as with the plates, the spoon can be pushed against the side to get the cereal on the spoon without sliding over the edge.  I had often needed to feed her the cereal especially when she got to the last one third of the contents of the bowl.  With the chili bowl, I seldom have to help. She can use the handle to tip the bowl, making it easier to get the last of the cereal on the spoon and into her mouth.

He also made us some deep salad bowls, that, along with the chili bowls, can be used for ice cream should that be necessary. By the way, after picking up the ceramics, we drove another half hour or so to stop at the Braum’s in Emporia for hot fudge Sundaes with pecans.

I recognize that it would have been cheaper to use the functional plastic plates.  It is also true that just because Mary Ann has Parkinson’s Disease does not mean the aesthetics of our environment are no longer relevant.  If anything, they are more relevant.  We have less opportunity to get out and see beauty since we are at home most of the time.  We choose to have a quality of life that is nurturing and stimulating.  Objects of beauty are not just unnecessary extravagances but are visual cues that our life together is not just a matter of getting by until we die.

For some reason, Mary Ann did not at all warm up to the idea of using one of the plates to hold birdseed and be placed on one of the flat rocks in the waterfall area in our back yard.  It would look so great!

Today I encouraged Barry Jepson to set up a small area in the shows he does all over the country, an area with items that are user friendly for those with physical limitations.  Since it is a very busy time for him, he is not yet ready to put these new plates on his web site, but hopefully it will happen soon.

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Maria’s George died this evening.  Others are not far behind.  It is such a privilege to read the posts of those in the last days and hours of life with their Loved Ones.  The Lewy Body Dementia Spouses’ group is candid about what they are going through whatever it may be at any given time.  It is a help to the rest of us to hear straight talk with all the details from others at different places in the journey with Lewy Body Dementia.

Each death that is recounted brings lots of responses from others.  There are many celebrations that the battle is over and the Loved One is finally at peace. There is relief that the Caregiver Spouse is also free from the clutches of the Dementia.  There are from the same people words revealing a deep sadness that the time of Caregiving is over.  One spouse giving care during those last days and hours wished she could just keep ministering to her husband without ever having to give him up.

As that fond wish to continue to care resonated in my thinking, I realized just how true some words were that were spoken by a friend when I retired.  He has retired and cares for his wife who has had ALS for many years.  He observed what an honor it is to be able to become a full time Caregiver.

As so many in the online group have died in the past months with more moving into their end times, I recognize just what a privilege and honor it is to have time with Mary Ann.

We spent a good portion of the day driving in the car.  We headed out to pick up a friend and then drove to the studio of our favorite potter.  The studio is in a tiny Kansas town about an hour away.  We picked up a couple of pieces while we were there.  One was a chili bowl with a handle and high sides.  Our hope is that the high sides will keep the cheerios from sliding out of the bowl as Mary Ann chases them with the thick-handled spoon.  We left with his artisans a plastic plate we had purchased to make it easier for Mary Ann to push food on the fork or spoon without the food slipping off the edge of the plate.  Our request is that he make a ceramic plate shaped like the plastic sample painted with glazes matching a couple of other pieces he has done.  There is no reason that we need to leave aesthetic considerations behind when we get adaptive devices to make Mary Ann’s life a little easier.

It is her birthday tomorrow.  The bowl will be her birthday gift — surprise, surprise! We have come to the age at which birthdays diminish dramatically in interest.  At least that is how I rationalize my lack of creativity in celebrating them.

We drove through an area of the Flint Hills.  The green of the spring grass, recently watered by rain showers, glistening in the sun was breathtaking.  Birds were flying, cattle grazing, van passengers soaking it all in.

As I think about those who have lost the ones for whom they have been caring, i realize more vividly than ever just how great it is to have this time.  When I am mid-task, doing something I don’t particularly enjoy, irritated at Mary Ann because she seems to be fighting against the very thing I am doing to help, it is easy to weary of it all and wish it was over.  I am grateful that it is not over.  I am grateful that we can sit at Panera’s and have a Bear Claw and a cup of coffee.

We have had a couple of tough nights in the last week or so.  Those are the nights when she is restless, needing some sort of assistance two or three times during every hour of the night.  It is not so much the tiring night that is the problem but the two days of increased hallucinations and confusion and long daytime naps that inevitably follow.  Tonight again, there was concern about the comings and goings of the Thursday people. We went through the skin Cancer removal, subsequent fall and repair of the wound, all in the last ten days or so.  Mary Ann has struggled more with spatial issues and dexterity resulting in her need for more help in getting food of the plate and into her mouth.

In this same last week we have had some very good days, eating out with some new friends, running errands, spending time at the library, having ice cream treats, going to see the Star Trek movie, enjoying a helpful Parkinson’s Support Group meeting, experiencing our own little meals on wheels program as  couple of great meals were brought over, a melt-in-your-mouth four layered chocolate cake with fluffy sweet white frosting covered with shredded coconut being delivered.

What I intuitively recognized in those thirteen seconds as we sat at McFarland’s restaurant September before last is absolutely true.  We needed time together while we have it.  As others spend their last days and hours concluding their journey together, it becomes crystal clear.  I have an honor, the honor of being Caregiver to Mary Ann.  I am grateful not to have missed the chance.

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.