I've been having a hard time lately too
Hi Sandy and others,
I also find this disease to be horrible, and possibly one of the worst things that could happen to someone (at least the form that my dad has). The only blessing is that dad is not in any pain. My dad has the rare dementia that can come along with the bulbar form. He cannot express what he wants or needs because the dementia has made it to where things just don't make sense to him or us. He is on a vent, which has prolonged his life, but has also made this end stage prolong too. He is beginning to lose the ability to walk and his arms are becoming very weak. When he stands, he is very hunched over and cannot hold his head up, so now he has to use the wheelchair. Along with all of this, he cannot use the bathroom without assistance every time. His hands are too week to use a urinal by himself and his sphincter muscle is so weak that he cannot push out a bowel movement. My mom cleans up many messes needless to say. It can be frustrating because dad will think he needs to use the bathroom many, many times throughout the day (both with urinating and bowel movements) and nothing will happen. I don't know if he just doesn' really understand what he needs and thinks it might be the bathroom, but it is very laborsome on my mom. This would all be so much easier if dad was clear headed and was thinking straight. The dementia has made it feel like we have already lost my dad and that he is stuck in this broken body now. It's horrible. If there is one thing that I could changed about dad's ALS it would be that he could still communicate with us clearly and tell us what he needs or wants. He just has this haze over his eyes most of the time, and it is hard to tell if he really understands what we say to him. At times, it is really hard to stay positive, but we all try our best. Dad's 53rd birthday was yesterday and we celebrated. You can't help to wonder though if this is his last birthday or not. I hope and pray that this new year brings some joy in our lives, but I definitely worry about what is to come.
Dana
Hi Sandy and others,
I also find this disease to be horrible, and possibly one of the worst things that could happen to someone (at least the form that my dad has). The only blessing is that dad is not in any pain. My dad has the rare dementia that can come along with the bulbar form. He cannot express what he wants or needs because the dementia has made it to where things just don't make sense to him or us. He is on a vent, which has prolonged his life, but has also made this end stage prolong too. He is beginning to lose the ability to walk and his arms are becoming very weak. When he stands, he is very hunched over and cannot hold his head up, so now he has to use the wheelchair. Along with all of this, he cannot use the bathroom without assistance every time. His hands are too week to use a urinal by himself and his sphincter muscle is so weak that he cannot push out a bowel movement. My mom cleans up many messes needless to say. It can be frustrating because dad will think he needs to use the bathroom many, many times throughout the day (both with urinating and bowel movements) and nothing will happen. I don't know if he just doesn' really understand what he needs and thinks it might be the bathroom, but it is very laborsome on my mom. This would all be so much easier if dad was clear headed and was thinking straight. The dementia has made it feel like we have already lost my dad and that he is stuck in this broken body now. It's horrible. If there is one thing that I could changed about dad's ALS it would be that he could still communicate with us clearly and tell us what he needs or wants. He just has this haze over his eyes most of the time, and it is hard to tell if he really understands what we say to him. At times, it is really hard to stay positive, but we all try our best. Dad's 53rd birthday was yesterday and we celebrated. You can't help to wonder though if this is his last birthday or not. I hope and pray that this new year brings some joy in our lives, but I definitely worry about what is to come.
Dana