the ugly side of als

Well, that’s an oxymoron because there isn’t any pretty side of ALS.

ALS in a nutshell…

Amyotrophic lateral sclerosis (ALS), often referred to as “Lou Gehrig’s Disease,” is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.

There is not a cure or treatment today that halts or reverses ALS. Once diagnosed, the person has 3-5 years to live.

My step-father, Ron has lived with ALS for 8 long years! He is completely paralyzed. He can not talk, he can not eat, drink, sit up, walk, hug his grandchildren, kiss his loved ones… he requires 24/7 care. My mother is one of his caregivers. She also works a full-time job. The state of Missouri does not deem him worthy of 24/7 care benefits and only pays for a part-time caregiver. So, Mom works to help pay for another caregiver out of her own pocket. After her full-time job as a factory worker at Gates, she comes home to “relieve” the caregiver for the day and she starts her next full-time job. Caring for Ron is like having a baby that has never grown up. He is now almost always on a vent to keep him breathing. He needs suctioning out because he can not swallow. He needs fed by a feeding tube. He needs his diapers changed if she doesn’t get him on the toilet in time. She gets up every couple of hours to suction him out at night, so she is seriously sleep deprived. They “communicate” by reading his lips.

Years ago, when Ron was first diagnosed, a friend gave me the book “Tuesdays with Morey”. What a wonderful and inspiring book! But, where Morey was compassionate of other and inspiring, Ron is ungrateful and hateful. Where Morey valued and cherished everyday that he was still breathing, Ron berates and belittles everyone around him that is keeping him alive.

He takes so much effort to “communicate” that one would think he would choose his words more wisely. But he doesn’t. Instead he calls my Mother a “f*&%ing B*&%ch”, “fat pig”, “dumb ass”, “idiot” the list goes on. Even after finding out about infidelity on his part (before he was sick) she still refuses to put him in a nursing home, so my hands are tied. It is her life, her decision. She and I know when she does put him in a home he will die. She doesn’t want that on her conscience. He is bankrupting her and I have to sit by and watch it. We live 2 states away so I can not be there everyday. My mom also takes care of Ron’s 2 grandsons who are 5 and 8 years old. Their mother lives next door but couldn’t care less about them. The boys live with my mother. I am afraid of the stress this is taking on her. I am afraid he is killing her. There is no longer any love between the two of them. That is really the most heartbreaking part of it all. How can one care for someone who is demeaning to you all the time and doesn’t love you, even care about you?

I really admire Michael J. Fox, who has Parkinson’s disease. The two diseases are related in that they both are neurodegenerative diseases that effect nerve cells. His outlook on his illness is inspiring and sad at the same time. Because Ron’s life is not an inspiring story of hope or determination. It is a sad and ugly truth that most never talk about when it comes to a fatal disease. We don’t talk about it because it would somehow be “wrong” to do so. To often the caregiver suffers more from the disease than the one diagnosed.

Are you are a loved one in the same situation? I would like to hear from you.

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