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.
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The Caregiver Calling 