He was a pleasant fellow, who came to our home and snapped lots and lots of pictures judging from the rapidity of the clicking sound his camera made. He is a photographer for the Capitol-Journal Newspaper (http://cjonline.com), one of two photographers left. There were seven when he started. He is a young man (at least from my sixty-six year old perspective). It could not have been very many years ago when he began his career there.
While I certainly cannot be sure that it will actually happen, my understanding is that the article should be in this Saturday’s issue. The article was written by Linda, who has known us and our situation for many years. Linda works in the office of the church I served for more than a dozen years. She just graduated from college after a long hiatus to raise a family. In graduating from college, she has realized a goal that has been with her for much of her adult life.
The article intends to look at the Caregiving role with an eye toward how meaningful it can be for the one doing the caregiving. The pictures showed us in our normal mode, sitting at the table, then moving to the spot by the television. Mary Ann looked very nice. Zandra, our bath aid, did a nice job helping her get ready. One or our Volunteers was here at the time. Whenever Cynthia comes, the ironing board and iron come out. What a Gem she is! It was a busy day. Kristie, whom we pay to give the place a good cleaning once a month, was here, spreading that wonderful clean smell throughout the house. Clarene came to stay with Mary Ann for a couple of hours in the afternoon. Young came over for a while (bringing some Coldstone Creamery mix of chocolate ice cream and pecans). Young and I worked on planning a special worship service. During that time, Ann came over to visit Mary Ann. The morning had begun with Paul and Shari to the house for our weekly two hour Spiritual Formation that meets on our back deck. Attendance was down by two. Eva came to stay with Mary Ann during the group meeting.
Most days it is just Mary Ann and me. Today there was a veritable explosion of activity. It was a great day. It was a very public day. What a contrast to the early years, just after Mary Ann was diagnosed with Parkinson’s Disease.
For the first five years after diagnosis, Mary Ann would not permit any mention of the disease to anyone outside of our children. Neither her Mom nor my parents were told about it. Her Dad died just two weeks after our wedding. Mary Ann has always been an extremely private person. She didn’t want people looking for signs of the disease. She did not want people relating to her as a sick person, just as a person. She did not want pity, nor did she want others talking about it when she didn’t want to talk about it. It was her business.
She did allow me to tell a couple of folks so that I would have someone to talk with about what I was going through as we tried to incorporate the disease into our reality. I was very grateful for that gift. I process things verbally. I needed an outlet. On the contrary, she needed not to talk with others about it.
After five years, the symptoms and side effects of medications made it obvious that something was wrong. It was about seventeen years ago. I remember vividly sitting at an outside table at a beer garden in Gruene, Texas. Mary Ann was resting back at the condominium. She had given me permission to tell our closest circle of friends (three other couples) with whom we were vacationing. Of course they knew something was wrong, but they appreciated knowing what it was.
This has never been an easy road, but it was much easier for me when the news was finally out. It had been so difficult to pretend nothing was wrong when it was such a huge presence in our lives. Finally I could share it with my parents and siblings and friends and parishioners. I have little doubt that it was easier also on our children to have it out in the open.
With the information no longer hidden, people could more openly offer their help. Mary Ann’s co-workers could be more openly supportive of her. I didn’t have to make excuses any longer when we could not attend activities. At that point Mary Ann was working full time to help get the kids through college. She was exhausted at the end of the day and needed weekends to recuperate.
When we moved here, the Parkinson’s was public knowledge. As the disease progressed and the side effects of the meds increased, help became a necessity. Without it, I could not have continued to earn a living. The cost of full time care for Mary Ann while I continued to work would have come to close to my entire salary. For me to stop working would have eliminated any income on which to live. It was at that point that members of the congregation came to our rescue. Margaret set it in motion. Mary Ann has called them her angels. If they were her angels, Carol was the archangel. For at least six years, Carol single-handedly scheduled up to sixty-five different Volunteers, using a spiral bound pad of ruled sheets. She scheduled evenings and weekends and weekdays, overnights. There were people who did every imaginable task. The last two years before I retired, three people, our daughter, Lisa, Mary and Edie used the website http://www.lotsahelpinghands.com to manage the Volunteers. Now that I am retired and doing full time care, Mary is still scheduling a few folks who continue to come so that Mary Ann and I can have periodic breaks from one another.
When the Volunteers come to the door, we might be in a situation that does not allow either of us to come to the door. They all know, that if we do not come to the door, they should just come on in.
Understand just how dramatic the transformation has been in our household. We have changed from a completely private household with a very private person, both of us keeping a huge secret, to a very public place in which walk-ins are welcomed.
Mary Ann and I have grown in the process. We have marveled at the generosity that has come our way now that the secret is out. In spite of the constant stream of news to the contrary from the media, we have been surrounded by very good people, who will do almost anything to help when they see a need.
What used to be secret will, apparently, be in the newspaper this Saturday. A few months ago, I was invited to do a live hour long interview on the radio by phone with Starr and Bob Calo-oy who do a weekly radio show in San Antonio, Texas. The show is called Caregiving 101. I am writing this blog, posting almost daily on the various experiences we are having as we deal with the presence of Parkinson’s in our household, taking a toll on Mary Ann as it progresses.
What was private is now public. As the Baby-Boomers come along behind us (we are a few years ahead of the bulge), more and more will be impacted by chronic and progressive illnesses. More and more people will need care and will become Caregivers. For most of us, it just folds into our lives without invitation.
The public forum allows us to talk and listen and learn so that no one has to do this alone. The time for secrets is over. Good people want to help. Go public.
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The Caregiver Calling 