Her name was Lilly, and I found her to be a sweet human being. I remember the first time I showed up at her house, she couldn't talk, but she could walk with my help and express herself through grunts and gestures. Taking care of Lilly was easy and fun. Her husband would spend the 4 hours I was with her and go run errands, make model airplanes, write, or just get away for no reason. To take care of Lilly, it was a 24 hour job, and it was exhausting.
I didn't do much while I sat with Lilly. It was much more for the comfort of not being alone. We would eat, well, I would pour her liquid food in the tube that ran through her stomach wall into her inner stomach. She hadn't eaten by mouth in a few months. I would walk her to the bathroom at least 7 or 8 times an hour, even if she didn't have to go, she still wanted to go. She was a religious 7th Heaven and Little House on the Prairie watcher, so it was a good way to spend our time. She couldn't control her overactive saliva glands nor swallow so she would wipe her mouth constantly with a Kleenex. I think we would go through a single box in 4 hours. Her husband was buying copious amounts of tissue.
I loved this woman. She would beg for me to read to her. Anything really, and it was so much fun. She would listen to me read, sit back with her eyes closed and just listen. However, there were times when she would have a mood swing and because she couldn't talk or communicate it would be frustrating for her, and sometimes for me, to the point where she would want to go into her bedroom and not be around me. It was hard to watch the slow decline of Lilly. She was a kind woman with a horrible disease.
If you have an account on FaceBook or are a breathing human being (save for my father) no doubt you have come across a fundraising "fad" for ALS. It is: dump ice on your head and challenge others to do the same. I think I have heard several rules for this "game." The first is get challenged and dump ice water on your head and pay 10$, the second is get challenged and dump ice water on your head so you don't have to pay 100$, or get challenged refuse and pay 100$.
I think my favorite thus far is Patrick Stewart's. (Are we surprised =) He is sitting at a table, in front of a fireplace obviously writing out a check. Instead of showing the check amount, he rips it out of his checkbook, places it aside, reaches to his left and grabs the ice bucket. I thought he might pour it over his head, but come on, it is Patrick Stewart...the man is so uber classy! Instead, he grabs a glass, puts 2 ice cubes in it, pours himself some scotch and toasts to nothing in particular. Damn, I love that guy!
But...Whatever the rules--it is garnering tons of limelight on this horrifically debilitating disease. I remember speaking with Lilly's husband and the resignation on his face as he looked at his wife looked like it had been there for a little while. He told me it was a disease with no cure, and it would eat away at Lilly 'til her tiny body couldn't take it anymore. 'Til all her muscles gave out...and he just had to watch her fade.
I showed up on a Thursday, it was my last visit for the week, and I was heading to see Lilly. I showed up in a pair of scroungy shorts and a ripped up t-shirt. I was heading to the lake when I got off work, and I knew that Lilly and her husband didn't care what I wore to their house. But when I pulled up, I noticed a lot more cars than usual. I didn't think too much, could be family. But when I went inside, I saw Lilly, on the couch being held by her husband, desperately trying to hold on to life. This was it. This is what the disease ALS does to someone...it forces them to gasp and struggle and fight with every ounce of strength they don't have anymore just to stay here.
I didn't know what to do. I had never had anyone die in front of me before, so I prayed. Her priest showed, her family showed, her husband held her, and I prayed at the foot of the couch. I still remember that moment, as her husband took off the oxygen cannula, and bawled holding her close. It was mere minutes when we all watched her take her last breath. This disease destroyed her, but not just her her entire family.
Several moments passed and I was then given the honor of preparing her body in the living room before they came and took her away. I thought of this woman, this family, this disease, and I cried myself.
So when I heard that this challenge was happening I was grateful. I am hopeful that people like Lilly will get a chance to live longer. I am hopeful that the money that is raised will perhaps be used to find a cure, and maybe it will. We can only hope. I don't plan to dump water on my head, but I plan to send that text with that donation that will perhaps allow people like Lilly to keep a smile on her face for just a bit longer.
I didn't do much while I sat with Lilly. It was much more for the comfort of not being alone. We would eat, well, I would pour her liquid food in the tube that ran through her stomach wall into her inner stomach. She hadn't eaten by mouth in a few months. I would walk her to the bathroom at least 7 or 8 times an hour, even if she didn't have to go, she still wanted to go. She was a religious 7th Heaven and Little House on the Prairie watcher, so it was a good way to spend our time. She couldn't control her overactive saliva glands nor swallow so she would wipe her mouth constantly with a Kleenex. I think we would go through a single box in 4 hours. Her husband was buying copious amounts of tissue.
I loved this woman. She would beg for me to read to her. Anything really, and it was so much fun. She would listen to me read, sit back with her eyes closed and just listen. However, there were times when she would have a mood swing and because she couldn't talk or communicate it would be frustrating for her, and sometimes for me, to the point where she would want to go into her bedroom and not be around me. It was hard to watch the slow decline of Lilly. She was a kind woman with a horrible disease.
If you have an account on FaceBook or are a breathing human being (save for my father) no doubt you have come across a fundraising "fad" for ALS. It is: dump ice on your head and challenge others to do the same. I think I have heard several rules for this "game." The first is get challenged and dump ice water on your head and pay 10$, the second is get challenged and dump ice water on your head so you don't have to pay 100$, or get challenged refuse and pay 100$.
I think my favorite thus far is Patrick Stewart's. (Are we surprised =) He is sitting at a table, in front of a fireplace obviously writing out a check. Instead of showing the check amount, he rips it out of his checkbook, places it aside, reaches to his left and grabs the ice bucket. I thought he might pour it over his head, but come on, it is Patrick Stewart...the man is so uber classy! Instead, he grabs a glass, puts 2 ice cubes in it, pours himself some scotch and toasts to nothing in particular. Damn, I love that guy!
But...Whatever the rules--it is garnering tons of limelight on this horrifically debilitating disease. I remember speaking with Lilly's husband and the resignation on his face as he looked at his wife looked like it had been there for a little while. He told me it was a disease with no cure, and it would eat away at Lilly 'til her tiny body couldn't take it anymore. 'Til all her muscles gave out...and he just had to watch her fade.
I showed up on a Thursday, it was my last visit for the week, and I was heading to see Lilly. I showed up in a pair of scroungy shorts and a ripped up t-shirt. I was heading to the lake when I got off work, and I knew that Lilly and her husband didn't care what I wore to their house. But when I pulled up, I noticed a lot more cars than usual. I didn't think too much, could be family. But when I went inside, I saw Lilly, on the couch being held by her husband, desperately trying to hold on to life. This was it. This is what the disease ALS does to someone...it forces them to gasp and struggle and fight with every ounce of strength they don't have anymore just to stay here.
I didn't know what to do. I had never had anyone die in front of me before, so I prayed. Her priest showed, her family showed, her husband held her, and I prayed at the foot of the couch. I still remember that moment, as her husband took off the oxygen cannula, and bawled holding her close. It was mere minutes when we all watched her take her last breath. This disease destroyed her, but not just her her entire family.
Several moments passed and I was then given the honor of preparing her body in the living room before they came and took her away. I thought of this woman, this family, this disease, and I cried myself.
So when I heard that this challenge was happening I was grateful. I am hopeful that people like Lilly will get a chance to live longer. I am hopeful that the money that is raised will perhaps be used to find a cure, and maybe it will. We can only hope. I don't plan to dump water on my head, but I plan to send that text with that donation that will perhaps allow people like Lilly to keep a smile on her face for just a bit longer.
Comments
Post a Comment