Daughter struggling with father's ALS
My dad was diagnosed with ALS about a year ago while I was living in out East and they were in the Midwest. I moved home to be close to family, help my mother (as she is helping with my dad and brother with Cerebral Palsy), and spend time with my dad while he was still in good health, or as good as can be. Now that I'm home, I have severely struggled as his condition and it's progression is much more obvious to me whereas living away from home I was more separated from the reality. Some days I cry because I feel so blessed to have the opportunity to appreciate my time with him, and some days I cry because I am devastated and don't know how to continue this rollercoaster ride until the end when it will only be worse - and when will the end be?
Little moments have haunted my mind. My dad is an amazing cook and has always made extravagant meals, however, this is becoming more difficult. As he is stirring he'll drop the spoon and claim his hand just stopped working, something so small but carries so much burden. He was proudly bringing food from his grilll and I hear him yell and I look over to see him fallen over the steps. The hardest part wasn't that he fell but the look on his face. It was as if he finally realized he needed help and I felt guilty I had not predicted he would. I should've know.
I can't help but fear the day he is in a wheelchair and struggling to eat, as we have grown up with a brother/son with severe Cerebral Palsy. It must be hard for him to realize that his son whom he had worked and struggled so hard to help as a father will soon be his own situation - it seems like a sick twist of fate to me.
Questions flood my mind constantly. Will my sister regret not being around? What will my mom do? Will he be at my wedding? Will he meet my children? Would my mom ever re-marry? What will holidays be like without him? How will we manage? How can I make sure he never feels guilty? How can I help? Can I do more?
Will life ever be okay again?? Endless. Questions.
Comments
tanvidhi
Tue, 10/11/2016 - 17:17
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Also A Daughter
I can see where you're at and I have also been there. And it's hard. There's nothing I can really tell you that will make you feel better because false assurances only hurt more. This much I am certain of.
Being a child to someone with this disease isn't easy. It's hard. There are so many aspects of it that make you want everything to just stop and you hate yourself for it. At least, that's how it feels with me. My own mom was diagnosed with ALS a little over 18 months ago and it's really been a struggle for everyone. I have been by her side ever since the beginning and I've watched her slowly deteriorate more and more each day.
Every time she realizes that she can't do something she used to be able to do , it's like everyone's heart breaks a little bit and fear slowly builds in about what is going to happen. I've always tried to be strong.
And ever since she was diagnosed, I never cried. It was like I was in shock and it still hasn't hit me that she's slowly disappearing. I keep expecting her to get better. Lots of diseases have cures. Why not this one? I keep praying that there's some cure. That there's something that happens that will make this all go away and it would be like a bad dream.
I can only give you advice. Be careful. It's hard to watch someone who's always been there for you and supported you grow weak the way they do. And with every fall your heart breaks a little too. You want to scream and shout and let it all out, but you can't because you have to be strong for them,
My mom is confined to her bed and wheelchair now. I know that none of this makes you feel better but it's the truth and it's not easy to accept. Every day they get weaker and weaker. And every day things get harder and harder. The person who held your hand and taught you how to walk is now sitting in a chair waiting for you to push them. It's hard.
Your dad isn't that bad yet, and his progression seems to be pretty slowly, comparatively. But there are so many things that will happen in the future that you just won't be able to imagine. And that's all what ALS is like.
People will tell you to stay strong and to take care of your dad. I know. I hear it all the time. And sometimes, it makes me mad. They don't know what this disease is like. They can't know. They can't imagine it but we have to experience it. It's easy to say "take care" and go back to their homes and their happy little lives.
We're the ones who take care of our parent.
If you have questions, I can try to answer them to the best of my ability but the questions that you talk about, I ask myself the same thing.
When I get married, will she be there? Will she get to hold my babies ini her arms the way she used to hold me? What can I do to make this better? To make it all stop? How can I make her happy? How can I be happy? What will life be without her? Who will I go to when I need help? She's my mom. How am I supposed to be without her?
And these questions make me really said. Really sad. But I can't do anything, except wait and watch it get worse. It sucks.
Pamela
Fri, 11/18/2016 - 00:33
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Daughter of Dad with ALS
My Dad was diagnosed two years ago in Nov. 2014. It is now Nov. 2016. He has went from a strong man, working hard and always on the go at 61 to now completely confined to the wheelchair. He still wants to get up everyday. I am his primary caregiver. I too moved to be by him and care for him. There is nothing more terrible than this disease. It is like watching someone waste away. In the last two weeks my Dad has lost the ability to speak and is only being fed by a peg tube. He is sad and hurts all the time, especially his tailbone. It is uncomfortable for him to sit or lay down. He does not sleep well. In the end your whole family will be exhausted. There is no happy place for you to go. It goes with you all the time. You want it to just be over. It is like a cruel joke. My family believes strongly in God but you will find yourself questioning when he will give your parent mercy and just let them go on home. Thier body is a shell, it moves and falls like a puppet with no strings. I am sorry if this sounds mean, I do not mean it to be. At this point this man I care for is still my Dad but he is not the same. His mind is overwhelmed, waiting to go and wondering how and when it will happen. He is so weak and frail but mentally he is cognitive about what is going on around him but you can see that he can no longer even participate. He is too tired of the struggle.
This disease may tear your family apart. It has done a great job of it with ours. And yes, there will be many people that say, "We are praying for you" but they will never come hand feed him, toilet him 10 to 12 times a day because they constantly feel like they need to use the restroom. They will not be there to lift him in and out of bed and wake up with him 4 and 5 times a night. They will not be there to take him to appointments and make financial arrangements, they will not be there to help you and this will begin to harden you toward Christian brothers and sisters.
This disease is horrible. Nothing that I know of compares to it. All I can say is talk as much now as you can. Once you can't talk with him all you will have is a speech device he can stare at but it will be difficult for him to carry on complex conversations with you.
I am sorry you will have to go through what I am going through. I am 42 and married, have two teenage children I am trying to care for in the mist of this. I am sorry I have no good news for you. I wish I could give you some encouragement but there is really nothing I can say about this situation that is positive except for my own fathers boundless faith in his creator. That is the only testament I see from this situation.
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