At tonight’s Parkinson’s Support Group, one Volunteer got a taste of what it is like for her husband with Parkinson’s. The Physical Therapist speaking to the group had her stand on some foam rubber and try to stand on one foot, then stand with her eyes closed. She struggled to keep from falling. She would have, had the Therapist not caught her. The therapist then asked, how would you like to spend every waking moment struggling to deal with that kind of disability. The therapist was addressing the Caregivers present.
I had two reactions: one was a feeling of guilt because I too often with impatience push Mary Ann to move more quickly doing whatever it is; the other was irritation that the terribly difficult task of the Caregivers was not acknowledged and appreciated.
The reality is that both reactions are valid. All of us who are full time Caregivers lose patience and forget that those for whom we are caring can’t do the most basic things without great difficulty. That they manage to do what they do is a testament to their courage and determination.
Caregivers have the impossible task of trying to anticipate the needs of another person who may not be able to verbalize those needs. Then the Caregiver must put those needs ahead of his/her needs no matter how small or great they may be. Caregivers also suffer from the whatever the disease their Loved One has.
I guess the only solution is to learn how to live in the tension between those two realities. Forgetting just how difficult life is for someone with Parkinson’s or any chronic debilitating disease generates bitterness and frustration. Denying the overwelming and draining task of being the arms and legs of another person as their Caregivers diminishes the ability to cope and find any joy in life.
It helped me to be reminded tonight of what Mary Ann is going through. Better understanding of her plight makes it easier to treat our daily challenges as obstacles that need to be overcome, rather than relationship issues between us. We are in this together. We need all our intellectual, emotional, psychological and Spiritual resources to meet and defeat the real enemy, the Parkinson’s and its consequences.
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There are just a handful of us, usually four, who gather on the back deck or in the downstairs when the weather is uninviting (this is Kansas). We begin at 7:30am each Wednesday morning. With the disjointed and erratic sleep patterns in our household, caffeine is a great gift from God! Hot coffee is the delivery system of choice — yes, even in Kansas on hot summer days (not many this year).
Our central purpose for that two hours is to grow in our ability to engage the presence of God midstream in our days, no matter what we are doing. We are a little slow. We have been at this for probably seven years now and haven’t yet gotten it worked out.
That Spritual Formation Group time is one of my life preservers. It is not a therapy group. We have a book with readings and reflections to spark our thinking. We do not understand life to be divided into compartments, one sacred and the other secular, or one physical and one spiritual. We understand life to be one thing, and God to be its source and sustenance.
For whatever reason or reasons, this is a particularly unsettling time for me. I am grateful for the lifesavers that are available to me.
One of the lifesavers is the sanctuary that is emerging behind our house. The deck has always been an inviting place. While it is probably no more than thirty feet from the back of the deck to the wooden privacy fence separating us from the next subdivision, there are now many good sized trees filling that space, some that we planted. The trees and the view to either side extend pretty much without obstruction for the equivalent of at least a couple of blocks. The fence behind us is up a fairly steep incline. The combination of that hill, the fence, and the trees create the feeling of seclusion.
The multiple bird feeders and those who dine at them add to the sensation of an outdoor sanctuary in the woods. Then there is the waterfall. Four levels cascade over well placed rocks, each level adding to the volume of that wonderful sound of falling water. That sound covers some of the people and vehicle sounds, feeding the sense of seclusion.
Some friends, Doug and Marikay, brought over additional plants for the wetland area created around the waterfall. They also brought an old branch and placed it on the gravel base among the plants and rocks. I am intrigued by that old branch. It is certainly old — old enough to have patches of lichen covering it. The color of the lichen matches the lichen on the rocks and the color of the needles on the cypress tree that hangs over that part of the waterfall.
One of the things that intrigues me about the branch is the metaphor it provides for life, certainly the life we are living. The branch is weathered and gnarled and without symmetry. Any old farmer would have long since cut it up for firewood or burned it in a brushpile. By the way, I like old farmers. There is an old farmer living inside me — along with a young rebel.
With eyes to see it, there is an elegance and beauty that transcends symmetry and smooth surfaces and orderly shapes. I wonder what that branch has seen, who has stepped over it, or climbed on it, or made its nest in it, what has marked its territory on it. I wonder what stories it could tell. Life as it is really lived is weathered, gnarled and without symmetry. Trying to make life pretty and pleasing to the eye, wastes precious time needed to live it.
Our life is not pretty. It is often smelly and ugly and messy, and certainly without a shred of orderliness. It is also beautiful, deeply fulfilling, bursting with meaning and purpose, often emerging from the very ugliness itself. I would not trade our cracks and crevasses and patches of lichen.
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I got up at 5:30am on Saturday, showered, dressed and was ready by five minutes to 6:00am to start the process of getting ready to go to Kansas City for the Parkinson’s Symposium. We would have to be on the road by 7:30am to make it on time. I had already complained to the Dr. about the early start time for the target audience who have mobility and sleep problems. He said the issue was finishing before lunch. Registration was at 8am and the program started at 9am. Living an hour and a quarter away added to the time issue.
Since I thought maybe Mary Ann could get ready in an hour (normally including morning chores, the minimum prep time is two hours), I let her sleep another half hour. At about 6:30am, as I helped her to the commode, she said, let’s stay home. I knew it would not work to try to force her to go.
I had initiated plans for a luncheon with friends in Kansas City to celebrate two birthdays members of the group were having. I told her that at least we ought to go to KC in time for that meal. After all, I had started the process of arranging the meal out. She agreed. We both went back to bed for a couple more hours.
It was good to visit with friends of thirty-five years. Even though we are only an hour or so from that crew, we end up getting together only four or five times a year, if that.
For a variety of reasons, the weekend seemed to provide a number of reality checks that reinforced the level of limits on our lives and the concomitant sense of isolation.
Sunday morning a Volunteer came. Edie always brings whatever is needed to leave behind a full meal, very tasty, with lots of variety. During the Volunteer time I headed up to the Lake for a while and then to the marsh below the dam. It was a helpful time. Feeling out of sorts and searching for some sense of renewal, the combination of devotional reading and sensory refreshment was especially meaningful.
The book (about spiritual formation) is speaking to my need, providing the sort of intellectual framework that fertilizes my roots and generates hope for growth.
What flooded my senses provided the grounding in the natural world that helps me reframe my situation. As I stood at the edge of the lake, the gulls spread over the water were screaming. I have no idea why, but they were screaming. I guess that is just the way gulls vocalize. Nearby, one gull flew over another that was sitting on the water. The flying gull made what sounded like some belligerent remarks, and the one on the water started screaming at the one flying. In other places on the lake, occasionally one gull would crash land into another and a skirmish would ensue. I don’t think this is mating season. I will have to ask a birder what was going on.
There were Cormorants diving for food. A raucous Great Blue Heron flew by joining the conversation as he flew. I watched a butterfly go by and come very close to becoming a snack for a Barn Swallow that just grazed it.
The highlight was what I had seen last week and thought to be a juvenile American Bald Eagle. My birding expert, whom I call Bob, after I reported the sighting, suggested that due to a flying pattern I descibed it might have been an Osprey. This week the bird came close enough to confirm that is was an Osprey. It had the telltale black mask on its face. In fact it dove into the water right in front of me to get a fish — an unsuccesful fishing trip. As I continued to watch, another bird appeared in the distance. It also flew toward me, and I was able to determine that it was a second Osprey.
I spent some time walking by the marsh, providing a little exercise, much needed. The lifting and moving and turning of Mary Ann provides some strength training, but my life is pretty much void of any cardiovascular conditioning. A combination of creativity and discipline seems to be the path toward better physical and spiritual health. I am better at the creativity than the discipline. I am way better at talking and thinking than I am at doing.
We are in another restless night. It has been no more than fifteen minutes between needs for the last two or three hours. It is hard to muster the energy for moving from thinking to doing when very tired and tethered to another person whose needs are constant.
Yesterday there was what felt like the start of the flu during the evening after church and into the night. Chills came for a time. Instead of writing a post on this blog, I went to bed in hopes of getting whatever it was to let go. Since I simply can’t be sick due to Mary Ann’s circumstances, I got better today. We will see what comes.
This is a very thoughtful time for me, with lots of feelings converging. My hope is that there will be enough time for processing, and that a healthier pattern of living will emerge. At the moment, I am shutting down. It is time to get to bed!
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The Caregiver Calling 