Daughter struggling with father's ALS

[mellabee]

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.

 

[scaredwifetx]

I am so sorry your father has ALS. I understand everything you said. It's so hard watching them struggle. You sound like a wonderful daughter and your father will be so blessed with you by his side. You also might want to think about counseling. You have so very much to deal with. The most important thing you can do is what you are doing already. Sending time with your father. Maybe you can cook together and he can teach you some of his wonderful recipes and you can help him.

There is nothing we can do to change the future with this disease but what we do today is so very important. Anytime you need to vent or ask questions let us know. There is a lot of support here.

 

[soonerwife]

So sorry to hear about your dad. It's so wonderful that you were able to move home to be with him and help. Cherish this time as much as you can. Try not to look too far ahead. You will never regret what you are doing. I believe it will give you comfort later.

 

[Nuts]

Welcome M, I'm so sorry about your dad, but so glad that you found us.

You can't predict everything, so please don't ever let guilt nudge it's ugly way into your already crowded life. I cannot imagine your mom caring for both your dad and brother, so thank you so much for being there for her.

I think the questions you wonder about are normal, at least at first, but at some point do try to let them go and just live in the present. Enjoy today. Living in the future with this disease just robs you of today.

Again, welcome, and chime in anytime.
Becky

 

[Jhill]

My oldest daughter lived at home during her dad's illness and also struggled with watching him deteriorate on a daily basis. She decided to see a counselor, which helped her a lot.

She is so thankful that she had the opportunity to spend so much time with
him and to let him know how much she loved him. He loved her back rubs & foot massages.

Hugs
Joan