Saturday, October 9, 2010

Dignity... You can help your loved one.

I sit here today and think back to my life's experiences. I remember when I first starting writing in this blog, how many things came to me each and every day. No efforts to find things I knew about and to write them down for you, the reader to enjoy and/or learn from. I realized today that life needs to happen in order to have something to write about. And all to often, life is or has happened around us and we didn't even see it. Too busy, I guess, living to really stop and see what we are living for. Sl-l-l-l-o-o-o-o-o-w down if you can. You will be amazed at what you see.
 That said, my thoughts do go back to an issue that is very real and up close to me in my life. It is "living" happening.  I have dealt with sickness and hospitals and doctors in such numbers, I can not even begin to imagine how many there have been. Sheila's {my wife that has gone to heaven} illness kept us in or near hospitals and doctors for 25 years. My daughters grew up more used to sleeping in hospital chairs and eating fast food on the run than living or sleeping at home. Such, was simply our life and we lived it as best as we could. It was what we did so that we could be near my Sheila as she spent about 1/2 of our married life in hospitals. There were things we strived to do to maintain the one thing that seems to be the first casualty of being repeatedly in the hospital. For that matter, a quick Jot into the ER or doctors office can do the same.
 I am of course talking about your dignity. The one thing that no matter how hard you try, somewhere it will be violated. But a new medical issue has come into my families life. Something that I have watched the family come to terms with and draw closer, as a family should when one is inflicted with an illness. This is new to all of us and though you read about it, talk about it and yes, have even made or told jokes about it, when the reality of it comes falling down in your own lap, you stand up and take notice. A loved one in our family was recently diagnosed with Alzheimer's. This illness devastates more than one million people and the effects are felt through-out the entire family and circle of friends. Alzheimer's takes your memory and your thought process and can take much more than those precious commodities from you. It also has the potential of stripping the inflicted of their very dignity. I have spoken on dignity in the past and am passionate about how one goes about preserving it for our loved ones. It is a bit confusing when a loved one becomes inflicted with this brain cell destroying disease. The first action taken seems to be to make light of the loved ones actions and inability to remember short term in an effort to allow them to feel less sensitive to the issue. That is quickly realized as NOT the thing to do. This action can sometimes have the very opposite wanted reaction. But then "the road to Hell is paved with good intentions" obviously personifies in part our "good" intentions.
 I return to the thoughts of dignity. When a loved one becomes ill, and any number of illnesses can be used here, they find themselves in situations that can be embarrassing. Though we can not take the embarrassment's away, once they happen, we, as loved ones can reach out and lessen the effects of the disease. A sound or action can say to them that they are a bother. Your actions will speak louder than life itself to them. To listen to a story that has been told moments before. To watch a loved one redo something they had just finished doing. To watch them forget for a moment where exactly they are at a given time. These are some of the effects of the illness. They each have the ability to steal away dignity by leaving the one inflicted wide open to an others actions. Taking the time to listen and caring enough to not only listen to a story repeated, but to not let them see in your eye's, EVER, that you have just heard a story. The memories that they DO find are so very important to them. Sharing them and showing an enjoyment in hearing them will thwart any chances that you could make the individual feel as if they are ignorant in any way. 
 When my wife was walking, she didn't need to worry if her dress was pulled down or if she was sitting properly. She didn't have to ask to go the restroom or eat dinner or even shower. She was treated with respect and knew her worthiness to all that loved her. There are things that even she said she took so much for granted when she could walk. I, as her husband and care-giver had to also learn along our journey to do things for her in a way that it kept her dignity. I learned by watching and by her gentle teachings. When she needed to go to the bathroom when first disabled, it embarrassed her. She was unsure and very young in our marriage, the trust issue was still in in infancy state. Sometimes I would be doing things and she would need me. Life was crazy for us and time was a luxury we seldom were allotted. I would sometimes sigh or ask her to give me a minute. I would sometimes sound exhausted or "put off." I was after-all new to this also. One day while she was calling for me to help her, I yelled I was busy. "Hang on a minute!" was my terrible response. When I "got to her" she sat there silently crying. My heart broke into a billion pieces when I saw what my words had done to her. A guilt I carry with me even today. I took her to the bathroom and lifted her with such care and love. She finished then asked if I had a minute. I assure you, the way I had hurt her assured that I had at least a minute. this is what she said. This... was my first lesson in Dignity for her.
  "I often wait until I really can not wait any longer to call you. I do this because I know you are busy trying to care for 2 babies and a wife that can not walk. I do this because I love you and I don't want to put more on you than is already there. But baby, I do this too because it embarrasses me to have to ask for help to go to the bathroom. To have you pull my pants down or skirt up makes me feel very vulnerable. You never complain or say a word but I know it frustrates you as much as it does me. But think of this. How do you feel when you are in a hospital gown and the nurses decide to walk you up and down the aisle? You pull the back shut over and over. You turn beet red if someone sees your butt. That is for a day or two. I live that way every single day. My dignity goes out the window when you have to do those things for me. I just want you to understand that IF I could I would but I can't so I trust in you to be there for me, as you always are."
 Through tears that flowed for hours, I heard her words over and over in my head. I thought about how I moved her or how I turned her at night.I thought about the way I lifted her or sat her down. And I began to change the way I did some things. I began to see her as a strong lady, filled with love and caring and the desire to just be respected for who she was. I made sure that she never ever felt like a burden. I helped her with a renewed love and respect that carried us through 100 hospital stays and more doctors office visits than I care to remember. Whatever we did, where ever we went, I made sure that she looked beautiful and was moved and treated with all the dignity she was deserving of. Because of this, she was able to continue life with respect and dignity.
 Over the years, the trust issues of course were settled and the way I conducted my self with her was always with the deepest of love. We were granted 19 more years than the doctors gave her and lived everyone of them as wonderfully and gracefully as we could. What a wonderful teacher she was. The Muscular Dystrophy Association has done many studies on Dignity in their patients. they too have learned that healing comes faster when treatment is given with respect to the patients medical condition and their state of mind. Although the loved one in our family does not require such extensive physical aide, it is still so important to allow them to be them-selves and not feel that the illness is a burden to others or that "They" in any way, tax you nor put a strain on you. I pray that each and everyone of you go through this life never having to deal up close and personal with an ill loved one. But should you, remember that Dignity is something you are freely given . You can reach out to a loved one and give them a peace of mind and assure them that they do NOT need to be different in any way. You love this person and they love you. That truly is All that matters.

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