My dad was recently diagnosed with ALS & I don't know how to act

[EricInLA]

Beauty4everyone makes superb points, as do others here. I can't say it any better, so I will say it less better. . .

There are no approaches that are right for everyone, because everyone is different. However, the feelings and reactions you are expressing are completely normal and valid. It's a tough situation, and the natural instinct is to hide your feelings to protect your parents. I feel the same way. I am the pALS in my family, and though my wife and 3 teenage sons obviously know of my diagnosis, I do not bring it up more than I have to, nor talk about my fears or sorrow because I want to protect them and retain as much normalcy as possible. I'm still regular fun-loving and goofy dad. There's a layer of denial in there too. I can get away with this for now because it's early in the course of this disease and I can still do nearly everything. That will change of course.

My other motivation for this is that I don't want them to treat me like a sick person. I don't want a heap of sympathy, or G-d forbid, pity. They wouldn't do that - they know me too well. But you know your father best and what he would be most comfortable with. Your mother can also help guide your actions with him. I wouldn't want my kids coming to me in tears, but if they did I would hug and kiss them and give them reassurance. But my preference is for a joke or to tell me something great they did in school. I prefer my own tears to be shed in the company of a good friend (as Laurie suggests) or therapist. Having said all that, if they ever open the door to a conversation about my disease, as my wife occasionally does, I would certainly go there. I'm just not pushing it right now. It will happen more once the disease manifests more physically for me.

I hope this helps you, and I wish you happy and meaningful years with your father.

 

[MarieLaure]

Thanks Eric for your sincerity. It certainly helps Many
of us.

 

[Jimi]

Beauty4everyone makes superb points, as do others here. I can't say it any better, so I will say it less better. . .

There are no approaches that are right for everyone, because everyone is different. However, the feelings and reactions you are expressing are completely normal and valid. It's a tough situation, and the natural instinct is to hide your feelings to protect your parents. I feel the same way. I am the pALS in my family, and though my wife and 3 teenage sons obviously know of my diagnosis, I do not bring it up more than I have to, nor talk about my fears or sorrow because I want to protect them and retain as much normalcy as possible. I'm still regular fun-loving and goofy dad. There's a layer of denial in there too. I can get away with this for now because it's early in the course of this disease and I can still do nearly everything. That will change of course.

My other motivation for this is that I don't want them to treat me like a sick person. I don't want a heap of sympathy, or G-d forbid, pity. They wouldn't do that - they know me too well. But you know your father best and what he would be most comfortable with. Your mother can also help guide your actions with him. I wouldn't want my kids coming to me in tears, but if they did I would hug and kiss them and give them reassurance. But my preference is for a joke or to tell me something great they did in school. I prefer my own tears to be shed in the company of a good friend (as Laurie suggests) or therapist. Having said all that, if they ever open the door to a conversation about my disease, as my wife occasionally does, I would certainly go there. I'm just not pushing it right now. It will happen more once the disease manifests more physically for me.

I hope this helps you, and I wish you happy and meaningful years with your father.

Funny you mentioned pity, Eric... My 11yro daughter is just a never ending barrel of laughs. The other day I asked her why she listens to me better than her mom. Her sarcastic humorous answer was ... "Oh I feel sorry for you Dad, so I listen to you.. " Let's all remember the power of laughter !

 

[vltsra]

Dear eyewece, I'm sorry to welcome you here. Laurie (lgelb) has some excellent suggestions for your dad that can keep him involved in art. Did you know that Renoir had arthritis and used adaptive equipment to keep painting for as long as he could? Your dad can continue to paint and draw and then can also pursue his love with digital art.

People will tell you the first few months are the hardest emotionally. I think that's true although we've had our moments since. Try to enjoy the smile on your dad's face when it is there. The people here on the forum have given me invaluable support and advice.

V

 

[eyecewe]

Thank you all for your kind words and taking the time to share your personal stories! Your responses mean the world to me, really.

I think the part I’m struggling with the most is that growing up, my dad was never the sensitive loving type. I knew he loved me, but he was raised in a family who never expressed emotions or feelings so he grew to be the same. I never had doubt that he loves me. He always showed love through his actions, being the main provider for our family. Growing up, it felt awkward to say “I love you” because we always knew we loved each other and didn’t think we’d need to say it out loud. Now, when I say “I love you” I don’t want him to think that I’m only saying it because he’s sick. I don’t want to do anything to make him feel like I’m only doing it because of his illness. I don’t want him to think I’m treating him “special” because of this, but I don’t want him to not think I care.

I visit them at their house about once or twice a week now. Each time, I see noticeable changes in my dad and it makes me really upset. He recently was put on some type of breathing machine at night that helps his lungs. His speech is getting more slurry, and he said he’s beginning to get weakness in his limbs. Good thing though is that he has gained weight rather than losing it. My mom always used to pick on him (not in a mean way, but in a wife-doesn’t-want-her-husband-to-have-a-heart-attack way) about losing weight but now she finds it amusing that he needs to GAIN weight.

I was thinking of doing a project for the family, kind of like a scrapbook. I was going to draft a bunch of questions for him to write out answers to, and then collage them in a keepsake book. What do you guys think? What kinds of questions should I ask? I wanted to ask about how he and my mom first met, about his family and growing up, etc. What kind of questions would you like to be asked?

Again, thanks to everyone for sharing your stories and thoughts. I really appreciate it!! -Mollee

 

[KarenNWendyn]

The scrapbook project sounds like a great idea.

You can ask them about how they met. Favorite childhood memories. What were the holidays like.

 

[vltsra]

What a wonderful idea! You could ask your dad about his childhood-school, who his best friend was, what sports or games he played, what was his favorite subject. Does he have siblings, and what were they like? Did he travel as a child and did he have any place that was special to him? As he grew older, what was his first job? Was he in the service and did he have any special experiences then?

By showing your interest in him and his life, you are showing him your love.