“Would it be okay to bring supper over for you and Mary Ann?”  I was sitting by the phone and answered quickly.  Maybe it was a premonition.  Not really.  That is not part of my understanding of reality.  It was however a very pleasing phone conversation.

Then at about 5pm, the phone rang again: “Just a heads up, we are on our way.”  Shari and Martin are among the most thoughtful and generous people I know.  I would be hard pressed to name all the people between them they have helped out in one way or another.  They help with their time and attention.  They accommodate their busy schedules, they are both professionals working full time, to the schedules of those they help whenever possible.  I have no idea how they do it, but we are greatful at our house that they do it.

It was not just any food.  Shari checked one of the last church cookbooks to find recipes Mary Ann had provided when the book was produced.  That way she was sure Mary Ann and I would like what she and Martin brought.  Mary Ann loved it and ate more voraciously than has been her recent norm.  Catalina Chicken (Mary Ann’s recipe), baked potatoes, corn, a freshly baked loaf of bread, a hot rhubarb pie (Mary Ann’s recipe), and vanilla ice cream to have with the pie.  All of it was piping hot (except for the ice cream) and ready to eat.

That makes twice in three days, since Edie and Daughter Gretchen brought over part of the midday meal they had prepared on Saturday, a very tasty Taco Salad with wonderful and creative toppings.  They stopped by to show Mary Ann some quilts that Edie’s Sister had made.  It was a treat for Mary Ann to look at the fabrics used and the patterns and the stitching and the colors.  Norma likes best piecing the quilt tops.  Mary Ann also enjoyed that the most in the process of making quilts.  I remembered enough of the jargon from those years to recall out loud some of her experiences.  There was the first quilt, a Sampler Quilt, hand quilted over the span of two years.  There were the six baby quilts Mary Ann brought out and put in front of Becky when she was pregnant with our first Grandchild, Chloe (who, by the way, is also Son Micah and Becky’s Daughter — you Grandparents catch my drift).  Mary Ann clearly moved back to those days as she examined and handled the quilts, even if there were few words.  The quilts were strikingly beautiful.  The quilts, lunch and a pot of flowers, Gretchen had put together provided us with a very bright day in spite of the lingering fog outside.

Tamara came over tonight to spend time with Mary Ann.  She had been sick a number of weeks ago and had not been able to visit in a long time.  Mary Ann had a refreshing break from me, and I was able to get done some things in my office that demanded uninterrupted attention.  Not only that, but two more people have taken slots in the next two weeks to allow me to connect with others and give Mary Ann the stimulation of communicating with people outside of our little, confined world.

Mary Ann has been doing reasonably well in the past couple of days.  Saturday night was not the best for sleep, and tonight she just said the raccoons have returned.  I told her that there has been not trace of them in many weeks outside.  The snow would have immediately revealed evidence of their presence.  She was not convinced.  On the contrary, she simply said, “Well, two raccoons have returned!”  That does not bode well for tonight’s hope for very many hours of uninterrupted sleep.

Well, I had best get to bed.  Tomorrow will be an early day, since the Bath Aide was off for Martin Luther King Day.  I will need to get Mary Ann’s hair washed in the morning before her Tuesday morning group at church.  She was not up to going last week.  I hope she goes tomorrow.  She really enjoys that group of good friends.  They have a love and concern for her that warms my heart.

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The phone rang this afternoon while Mary Ann was napping.  It was a former parishioner who was in trouble.  She and her husband were struggling with what to do.  They had eaten all they could of the wonderfully decadent chocolate dessert and were at a loss as to what to do with the last two pieces.  Could they bring themselves to throw them away???

When she finished describing their distressing situation, I made a remarkably generous offer.  You may not believe the level of my generosity, but here is what I offered.  I just blurted it out without even thinking.  Isn’t that the way heroes often describe their heroic acts — “I just did it without thinking.”  I told her that Mary Ann and I would eat those two pieces of dessert for her!!

She was so grateful, she and her husband brought them to our house.  It just feels good to do something to help other people when they are in need.

Last week I left the house on Tuesday evening to spend some quiet time away while a Volunteer spent time with Mary Ann.  There was one garden tomato left from a number that had been given to us.  By the time I returned that evening, there were thirteen with the a call promising more the next day, raising the total to twenty-one.  There were zucchini, a squash, a melon that had been delivered with the tomatoes that evening.  The next day the promised tomatoes came, plus some additional ones from a Volunteer who just brought some with her.  I have already eaten most of the tomatoes, and another ten came on Sunday.

Monday evening of this week after being out for a while, I came home to find a warm cobbler fresh from the oven that a former parishioner had delivered, along with a small vase filled to overflowing with brightly colored blossoms.

Today I was treated to lunch out while a Volunteer spent time with Mary Ann.  That is a monthly treat.

In the last fifteen days there has been at least one Volunteer at some time during the day on eleven of those days.  While schedules don’t usually allow Volunteers to come quite that often, it is overwhelming to think about how many people break open their busy days to make room for time at our home.  It is quite humbling to see just how thoughtful and generous people are.  The hours that Volunteer Coordinator Mary spends just scheduling all those people is a testament to that generosity.

It is hard not to feel guilty in the face of so many people in circumstances like ours, often in much more difficult circumstances, who don’t have a cadre of Volunteers and a Mary to schedule them. There are so many who are trapped in their own homes most of the time because one or both is suffering from chronic illness.  Those days when there are no Volunteers, or Mary Ann is having a bad day that keeps us in, or I have gotten sick, we have a taste of that kind of confinement and the loneliness it brings, the sensation of helplessness. As difficult as it is even with all the Volunteers, the thoughtful and generous people that surround us — as difficult as it is to manage full time caregiving, it is hard to imagine the challenge of that caregiving without support.

If you know someone in circumstances like ours, give him/her a call and ask, “What can I do to help?”  If they can’t think of anything when you call, offer to come over and help them make a list of answers to give people when they ask that question.  Then offer to check around, contact some folks who might be willing to help, ask them what on the list they would be willing to do, and schedule the doing of that task.

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Volunteer Elaine has one rule for us: “Don’t read the book between my visits!”  She doesn’t want to miss any part of the story.  Elaine comes on a Sunday morning once a month for about three hours.  She reads from a novel she and Mary Ann have chosen.  This morning, she took Mary Ann in the wheelchair to the neighborhood vest pocket park a little over a block away.  The two of them enjoyed the flowers folks had planted in the back yards that border the park.  There were a couple of pairs of Bluebirds that entertained them.  When they returned, Elaine started reading.  The next Sunday morning that she comes, she will go on with the next chapter or two in the story.

Each of the Volunteers brings something different to the visit.  Sometimes just watching television with Mary Ann is what is needed.  Other times Volunteers will keep Mary Ann abreast of their own lives and families.  Some do a little ironing (or a lot).  Some will bring food and maybe make the meal while they are here.  All of them expand Mary Ann’s world.

There are times a Volunteer will come while I remain at the house, doing a variety of tasks, sometimes outside, more often in the office at the computer.  That option is especially helpful for Volunteers who might be new to the role, needing to get accustomed to helping Mary Ann, or uncomfortable with or physically unable to do some of the caregiving duties.

Of course there is a benefit for the Caregiver when there is a Volunteer.  As a retired pastor still worshiping at the church from which I retired, I have chosen to keep a low profile.  The church has an Evening Service, one that I started about a decade ago.  It has a comparatively small attendance, and the service is a little quieter and more contemplative than the morning services at which there are lots of folks of all ages coming and going.  The Evening Service is a friendlier setting for those with handicaps since there are fewer people to move through, fewer energetic little ones zipping here and there.

The Evening Service is the one that we have chosen to attend.  When there is a Volunteer available I use the Sunday morning time for solitude.  I usually drive to a lake about twenty minutes from here.  The lake is large and beautiful.  I usually find a spot there to do some devotional reading and just look around at the sights.  Today, after the time at the lake, I drove beneath the dam to a marsh that has been preserved for wildlife.  As I walked along a path beside the marsh, looking at and listening to the birds, as I listened to the occasional frog, watched the dragon flies, listened to the wind blowing through the tall grass, it dawned on me why their was such a calm and comfortable sensation washing over me.

When I was growing up, we lived two blocks from a swamp.  That swamp was my retreat.  I spent hours there, at least until my Mother figured out that I was at the swamp again.  I always went back, no matter how often I got scolded.  I still remember the willow switch stinging the back of my bare legs (unfortunately I was wearing shorts) with each step as we walked back from the swamp after Mom came down to get me.

The sound of Red-winged Blackbirds singing always takes me back to those idyllic days.  I am there again with frogs and cattails and tadpoles and water bugs, with the wind blowing through the weeds.

A few hours away is an essential element in healthy caregiving.  I need those times of solitude, times during which I have no responsibilities.  I stay as long as I choose in one spot and when I feel like doing so, move to another.  This morning I walked very slowly and soaked in every dimension of the experience.  The Great Blue Herons, Meadowlarks, Tree Swallows, Barn Swallows, Orioles, the sounds of the occasional frog, the wind in the nearby Poplar Trees (the greatest for making wonderful sounds when the wind is blowing), all got the time and attention they were due.  Each time I would stop for a while, more variety of sights and sounds would enter my awareness.  They were there before, but until I quieted myself and relaxed, I wasn’t aware of them.  Civilization made itself known through the sound of four-wheelers in an area made for them not far from the marsh.

Mary Ann and I each got a time this morning that was refreshing and renewing and entertaining.  After I came home there were some problems to deal with due to the fainting issue making its presence known.  After we got through that, I made lunch. Yes, I actually cooked!  It is another of those recipes so simple a caveman could do it (sorry Geico guys).

The recipe:  I opened a package of pre-cooked bratwurst sausages and browned them in some oil in a large pan.  After setting them aside I put a large quantity of onions (cut into fairly large pieces) and browned them in the pan with the drippings from the brats.  Then came a couple of spoonfuls of garlic pieces from a jar.  After that I added lots of slices of apples.  After cooking all that for a while with the lid on so that the apples cooked through and softened, I put the brats back in, opened a can of Bavarian style sauerkraut over the top and let the flavors mix and the liquid from the apples and kraut cook down a bit. On occasion I have added a little left over white wine into the pan to deglaze it.  I do that just because it sounds cool.  I guess it also adds a little sweetness. By the way, there is no need to add any seasonings to this dish.  The apples and onions and Bavarian style sauerkraut add plenty of sweetness, and the brats and sauerkraut add the saltiness and lots of flavor.

What made me proud today was that Mary Ann actually ate it and seemed to enjoy it!

After Mary Ann napped, we headed off to the Evening Service.  That was a corporate worship experience for us, and a chance for Mary Ann to get out into a setting that allowed some social interaction.  She did struggle a bit during the service.  There was one fainting spell, but it passed quickly.  We just did a little more sitting than usual during the service.

Getting out with people is another important need both for the Caregiver and Receiver.  It is tempting to stay isolated at home.  While that may be easier, in the long run it will take a heavy toll on both.

We picked up a strawberry shake from Sonic for Mary Ann on the way home.  I made myself a tasty peanut butter and jelly (Blackberry Jam) toast, we watched a little television, I watered the flowers and now I am writing this while Mary Ann is secure in bed — I can see her on the little seven inch baby monitor screen.

This is hardly exciting reading, but it is an account of some of the practical tools  that allow us to travel this journey with Parkinson’s in a way that doesn’t steal from us the quality of our lives together.

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.