My dad has ALS. ALS takes everything from you except your mind. It takes your voice, your movement, and your breathing. These people with ALS go from living like you and me to not being able to move. They use an eye gaze machine to speak for them. They eventually have to have a tracheostomy and a feeding tube if they want to continue to live. They are trapped inside their body. ALS is horrible disease. There is no cure.
Caring for someone with ALS is tremendously hard. (If you’re a caregiver to anyone your an angel. God Bless You!) Caring for my father meant waking up every 2 hours to roll him and making sure he was ok. It meant spending majority of my time at home because going out was nearly impossible without an extra person. It meant being too tired to play with my kids. It meant missing appointments for my daughter because I was unable to get him out. It meant missing my children’s sports games. It meant feeling like a failure because I was physically and mentally unable to care for him and my children the way I felt I needed to.
My dad wasn’t my only responsibility I also have seven children. I had a full time job where I worked from home. My husband helped as much as he could but his schedule was always changing and he had to work outside of the home.
Then came the blessing. I was pregnant. This was going to be a good thing. This was a sign from God. This baby is God telling me that everything is going to be ok. Being pregnant and caring for my dad proved to be very difficult. This baby was a blessing though so it was worth it. I tried to find help. I tried to get him nurses. Nobody was able to help me. My dad asked to go to a nursing home. He knew physically and mentally it was impossible to carry on like this. Finding a nursing home takes time.
During this time I tried to get help for my dad. I tried so hard to find an organization to to help me. I knew being pregnant meant I shouldn’t be lifting 200 pounds several times a day. And the stress that comes with caring for someone with a terminal illness is hard. What was I to do leave him sitting in bed in crap? We’ll thats neglect so I had no choice. And no one deserves to live that way. Caring for him I paid the ultimate price I loss my baby. I could go into more detail about this but I will spare you the painful details.
My dad is now in a nursing home. I am able to do so much more with my kids. I am able to be the mom I need to be. I shouldn’t have to worry about my father being cared for. But I have too. The nursing home sucks. Finding a new nursing home is extremely hard. My dad is supposed to be out of bed at 6 am and given his medicines. Today it is 10:00 am and he just got his medication and out of bed. THIS IS BECAUSE MY SISTER GOT HIM UP. Last week, the nursing home left him hanging off his wheelchair and he now has an neck injury. The nursing home is supposed to check on him every 1.5 hours and give him a drink they do not and he is always dehydrated. There is a million and one things I could write about the neglect. I have called every state agency and they all tell me the same thing “we have to catch them in the act”. We’ll when the agencies are there they are on their best behavior.
My baby is dead because I had no help. I couldn’t get any help in the house. He is in a nursing home and he is worst off. You trust these people to care for your loved ones. Why is it so hard to find help? Why do these people not care? Would they treat their father like this? What does it take to get help? Has he not suffered enough? He didn’t ask for this disease! He doesn’t want to rely on people to care for him at 52 years old. ALS IS HELL! It is hell on him and the family. It is horrible to watch and now I have to worry about his well being. I am unable to lift him on my own now, so I can’t bring him home with no help. ALS is taking my dad and it took my baby. GOD PLEASE HELP US!!!
The big 8 