Its All About Give and Take
Entry posted by RLT
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Years ago, when I was home schooling five children, I often felt the need to get away from the kids if only for a little while. At that point we lived in a tiny Illinois community so that you had to travel 45 minutes at least to do even do basic shopping or Dr. visits. I loved my children and at that time we were doing an especially absorbing study on medieval Europe. To most people it must have seemed I had a rather idyllic life. The children’s father travelled a little over an hour each day to and from work which he felt a tremendous tedium. One day I made the mistake of saying that I was jealous of his ability to have that time each day to be all by himself. To me having that much time to be alone with my own thoughts seemed to be a wonderful luxury. He of course, jumped on me thinking I was implying that he had it easier than me.
No matter the situation we find ourselves in, there are always elements that we look at in other people’s lives and think – If only… As I read blogs I often have felt jealous of other caregivers who are still working. From my perspective, it seems like it would be such a relief just to be able to set aside the 24 hour concerns of care giving in exchange for another set of absorbing issues related to a job. Personally I would love the sense of self-dependence that would come from having my own income. But, to the person working, having a job is just another set of problems on top of the care giving. Those people look at me and think jealously that they wish they only had to worry what was going on at home. I guess that proverbial green is always someplace else.
In the end we are all struggling to best manage the set of circumstances in which we find ourselves. It is easy to curl up inside ourselves and not reach out or to present a select corner to exhibit to the world. It is probably in this that we are our own worst enemy. I ran into this full on the other day. I usually am unable to join a chat but I actually set my alarm for this one. The general discussion at one point dealt with the frustrations of incontinence. I got the opinion that most of the others were dealing with occasional accidents. I have been there. I had three reactions. One was to simply encourage others with the tricks I had learned. Another was a silent desire to prepare people for the possibility that occasional may lead to complete (Something that may have helped me along the road). Then there was that deep down ache that said I wish I still had Dick home, poop and all. How did I respond? Rather noncommittally.
Back to the home school years – At one point in time I became the “go to” person for counseling about child rearing and home education. I averaged about three women a week with whom I sat down and tried to help. So many of these ladies would come in tears and it was my job to dry those tears and encourage them not to give up. My reputation for helping grew because sure enough, for each of those ladies, life did go on. They learned they could do it. The “magic” though was inside each of them and not from me. Still I never wanted to do or say anything that would discourage these women. Therefore when I hit those days when things did not work so well I my life, I kept silent. I had all the “answers” and could give myself the same talk I gave to others. This placed me again in a very isolated position. I had no outlet to share my fears and failures. Before you write me off as vane or prideful I must stress that I never thought myself better than anyone (quite the opposite). I just truly wanted to help and wanted the best for each person (there were a few men).
The truth was though, that I needed support just as much as each of those people who came to me. I did not have the emotional support when the walls of my world tumbled down. Home schooling is long behind me and my primary roll these days is that of caregiver. I have been doing this for a long time and have learned a thing or two which I hope to share to help other people along their journey. But I never want to be in the position in which I got myself with the homeschoolers. After all, I came here for support. I need to be able to cry and tell what is going wrong in my life just as much as I want to rejoice at the things that do go well. I want to share the tips that have made life better for Dick and I and I want to be able to express my feelings when things feel like they are falling all apart.
I joined StrokeNet in 2005, after Dick’s first strokes the beginning of that year. The dynamics of StrokeNet have changed over time as some people have left and new ones become more active. I have adapted my involvement because of those times when there was a (unofficially) prescribed rule that was very much like the policy I adopted as a homeschooler. At that time I got shot down because I expressed opinions and feelings that were not within the prescribed let’s keep everything upbeat and happy. I agree that we can drag ourselves into depression by a constant negative dialogue. Experience has shown me that if we continue to deny negative feelings any expression, they manage to find another outlet. If in truth we could always feel those “acceptable” positive feelings, we would not need a support group. At present, I am pleased to see a bit more balance amongst the caregivers. A validation of our negative emotions can do a much better job of reversing our feelings than demanding we “snap out of it” or “think positive.”
I guess that in the end I have to realize that I am both a novice and an expert. I have learned a lot through caring for Dick for the past nearly 7 years. But there are always changes that challenge that move me return me to start. Often I can tell you more what not to do than what to do. I get tired of the pat “correct answers” fact is there are simply a lot of questions that we have that simply do not have an answer. The responses that come from the heart are the most helpful though. People who can feel comfortable with giving experience backed tips on incontinence (for example) as well as being comfortable with being honest that the issue overwhelms them at times are the most helpful to me. When you feel that you cannot express the reality of what you are feeling for fear of losing the position you cease to be supportive. It is all about give and take.
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