So I’ve been taking care of two clients with Lou Gerig’s Disease the past year. One has the kind that you can live for 10-20 years with slower progressing symptoms, Ed; and the other has the familial kind and hers is the faster progressing kind. She’s had it for 15 months. Ed’s can stand, use his arms and hands a little bit, communicates via an iPad becuase he cannot talk. Sandy, cannot do anything, she is on a ventilator and uses a Bipap and CPap mask. Her body is flimsy and fragile. If she does not wear her masks she will die. She obviously will not be with us much longer. It amazes me the difference between the two different types of ALS, also commonly called motor neuron disease. I’d never in my life even seen anyone with this disease. It is so sad. Sandy was hurting so bad tonight and there was nothing I could do for her except to offer her Morphine and Ativan. She’s unable to speak without her mask on and seeing her winch in pain is heartbreaking because she cannot scream out when her husband transfers her, with those few seconds she’s off of the mask. Crocodile tears toll down her face from the pain and I break inside for her. I have to hold it together for her sake but tonight I cried on the way home.
We think we have it bad when we get hurt or sick. We are pitiful when we are in pain, I know I am. I hate pain. But here I am, 30 years old, healthy, and get mad about the little things. Who the hell am I to complain about anything!? I can move, I can talk, I can scratch my head. I can hold children and animals, I can use my arms to squeeze them and kiss them. This poor lady’s world consists of the computer monitor in front of her and the TV sometimes. She plays games on her monitor and chats on Facebook, watches movies on Netflix. That is her life, that’s her little bubble. She sees her kids, 7 and 5, boys, as they rumble through the house with the newest game or toy. The extend of contact they have with their mother is a quick kiss goodnight, just after I take her mask off so they can kiss her on the lips. I’m at a loss for words at the moment. Her husband has been her main caregiver as he works from home. I was looking at him today and could see the sadness in his eyes. Tonight was the first night they had a CNA work. I believe he felt bombarded. His facial expressions spoke volumes. Privacy is taken away and control is being lost. I don’t think I can fathom a sadder situation.
Ed still goes to work everyday, his private caregivers drive him in his wheelchair accessible van, he runs a family owned business. He really has it made besides the pain he is in and will only occasionally take ibuprofen. He has intense PT to looses his muscles as they are like a rock. The difference between these two different yet similar cases is beyond me. I do know that I never wish my worst enemy to have this disease. This is the worst kind of sickness to have, to loose control of your body but still have a sound mind and know everything going on around you. Besides a grim diagnosis of cancer, ALS is the worst thing to have. It’s becoming a more common “word” to me, as in finding out about more people who have it. I have become a big supporter now of those who suffer from ALS, also their familys and friends. I plan to walk or run the annual ALS walk every year, or try to donate what little I can to help discover a cure. Although at this point in time there isn’t one. And I don’t know that in my lifetime there will be one. ALS patients will die from not being able to breathe, or possibly complications from it.
I think I have been blessed to have been able to care for and nurse these two individuals. Not only for the nursing experience but for the humbling part of it. I complain about things and I have no reason to. I need to not sweat the small stuff, as they say, because to healthy people, it’s all small stuff. But to come one with this crippling disease, one small little thing can cause an ungodly amount of pain and will take a persons last breath. Let’s all take a second look at our lives and think of how much we need to quit complaining, about everything. We are alive and can move around and breathe on our own. So shut up and sit down.