Saturday, March 1, 2008

Things I know about care-giving and Dignity

When dealing with persons that are wheelchair bound, we can forget that along with loosing the use of their mobility, there is another factor to consider. One that may be more important than the acts you perform daily to help them. What could be more important than caring for them? Allowing them to keep their Dignity is a very important part of care-giving. 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 worthness 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 alloted. 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 responce. 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 embarresses 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 bt 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 flowe 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 aburden. 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 ws 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 Assosiation 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.
I have another few things to add to this, but will stop for right now. Thank you for reading this blog.


Rene Perez said...

Many years ago when my cousin and I were children, she has Muscular Dystrophy. My Aunt has worked religiously with the MDA and I even have a shirt around here that I just washed the other day! My cousin got better but MD had left it's mark on her bones. She had to have surgery because her jaw lower jaw didn't grow and the bones in her hands didn't form right. She was always in a lot of pain. When we would visit her in the hospital, she insisted on pushing us (my cousin and I) in the wheel chair. Anyway.. as usual, your words of wisdom are far reaching.

Darrel said...

I think it is wonderful that your Aunt dedicates so much of herself to MDA. It is people like her that keep that great organization always ready and able to help those in need. I still answer phones for them yearly and walk for them and collect money for them. They gave to us a lot and I want to keep giving back to them.
I am touched and sorry that your cousin has had so much to deal with so much. I will keep her ever in my thoughts and prayers.
Thank you for reading this and for your Very kind words. Darrel

Michelle said...

i think often times it is so easy to forget that a person who is chronically ill or unable to motor themselves has embarrassment or suffers from indignities and most often at the hands of a loved one who has so much responsibility that they get overwhelmed and and just want to get through everyday.i think this could happen to anyone of us .i admire the way you loved Sheila and the adoration and respect you gave to her is rare and beautiful

Darrel said...

Chelle, I think that many times it is not meant but simply overlooked when someone is a care-giver. I hope my words may reach out to others and allow them to see things from the eyes of the person they are caring for.And yes sometimes the issues of just keeping them safe or from getting sicker can block or ability to see their need for that diginity.
Thank you for your kind and caring words concerning my respect for Sheila. I too had to learn along the way. Hugssssss, Darrel

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