My Dad was diagnosed with ALS. How do I deal with this?

[thedude]

Hello. My dad was just diagnosed recently. I'm only 16. He has always been active and healthy, but he had to get his. I'm trying to cope with this, but it's hard. My mom is a huge help, and I don't know what I would do without her to be here. I also have three older siblings, that help. I don't know what to do. I try to help, but I have no idea what he is going through. When will I start to feel normal again? It still feels weird, even though he is the same, old dad I've always had. It seems so unfair that this happened to him. Then again, most of you probably have felt this same way at some point. Lastly I get angry because there isn't a cure. My mom get helps, but I needed to hear from people who have first hand experience. Thanks.

 

[brooksea]

Dude, I'm so very sorry about your dad. My son was 6 when my husband was diagnosed. Things were fine for a long while. I hope that is the case with your dad. But, as things get more challenging for all of you, I would strongly suggest you ask your mom for counselling from a professional that deals with grief (you are grieving, even as he lives with this disease). Even now, you may need it as a coping mechanism in this journey. I'm serious about this! I wish I had found a really good counselor for my son a while back.

It was very brave of you to reach out on this forum. Please tell your dad you love him and give him a hug everyday. And remember, no matter what you see or hear from your father, he loves you.

 

[vzandt]

Hello Dude. sorry about your Dad. This really is a good place to be when you have questions. When my sons found out about their Dad they didnt know what to do...how to help....what to say. Its been over a year now since we found out. The best thing you can do is share your life with him. Let him know you love him. Make him laugh. Just be you. Take it one day at a time. We all learn as we go along. This is your new normal. You will get alot of them. And whether you know it or not you ARE coping. I wish I had some great words of wisdom for you, but I dont. Just know you are not alone. Join us anytime.

 

[lpcarr]

don't know what happened to that like button. Can't say it any better than Brooksea and
Vzdant just did. One of the blessings we have is at least our children are older. It's hard enough to be 16 without piling ALS on top of your teen years. Focus on all the things he can do and not what he cannot do. Take lots of pictures and do as many things together as you can. You may be amazed where this journey will take your relationship. Stay strong, but talk to others when you are down. This forum is great place to start. We all care about your family. I read this forum everyday, but don't post much. Always lots of good info here. Stay close and prayers to you and your family.

 

[panguinjen]

Hello dude,
Welcome and I'm glad you're here! My husband was diagnosed in August and my daughter is also facing many of the issues you are facing. We take one day at a time and focus on what is good; we've had to learn to let the little things go. Please ask your mom to set you up with a counselor or therapist to help with this journey! And like the others have said; spend time with him, talking or not talking....take lots of pictures...find something to laugh about every day. Your dad's body will change but his mind will still be there, his voice may go but not his hearing...lots of good information here! Come when you can...

Jen

 

[Miss]

My son was 16 when my husband was diagnosed, and my daughter was an 18 year old senior in high school. Within 5 months, she headed to college, and it was just the two of us. My son came to me and asked to see a councelor. He realized that this was not a normal situation, and sometimes it was better to have someone outside of the family to talk with about everything this disease entails. If you don't find the right one at first, go to someone else. Get your mom to check around for someone who specializes in this type of thing. Encourage your mother to check into the forum. She will find some many resources here. Do know that your mom is going to have to call on you for help sometimes. I needed my son's help with transfers for evening transfers for a few months. As for how you deal with your Dad, like vzandt said, just be yourself and include him in your life as much as possible. Don't set yourself up for regrets. Remember to say "I Love You".

 

[Barbie]

My son is also 16 right now andhas been dealing with his dad for 5 years. at 16, you can help with transfers when he starts needing help, in and out of bed and the toliet. try not to make it a big deal, he will be dealing with a little embarassment. we make jokes about his naked dad--all in good fun and that relaxes everyone. my son as very upset at first about seeing his dad but now he is a huge help. Also, try to make time for him and do things he can do, like watching tv together even though you would rather be on facebook with your friends. take him to the movies or play online chess or games with him. good luck!

 

[EGBAR]

Hello Dude
I too am sorry that you are having to go through this. Everyone is going through something. When our lives are normal, what ever normal means we don't think about it. The people we meet, we don't know what they are dealing with in their lives or the lives of their loved ones. When something as bad as ALS shows up, it is a slap in the face to say the least. I cannot describe in words how i felt, and how was worried about how it would impact my children, my wife and my parents and siblings. I am proud of you for reaching out to understand and seek help and counsel. This forum has helped me tremendously and know the people here will help as much as they can. I know your Dad is proud of you for how you are handling things. Enjoy the time you have with him. The best to you Dude contact me if I can help with anything.

 

[thedude]

Thank you all so much. I talked to my mom and she said it was probably a good idea to seek some help for the whole family to calm ourselves. My dad always talks about turning a negative situation into a positive situation. It's nice to see that people from all different backgrounds, beliefs, cities, etc can come together and provide so much help just because we share a connection to one, terrible disease. With this I leave you with a quote that will rule my dad's life for the duration of his sickness.


"In the confrontation between the river and the rock, the river always wins, not through strength, but by perseverance." - H. Jackson Brown

 

[panguinjen]

You are a wise young man! Have a good day today!

Jen

 

[HelenL]

Dude, your Mom and Dad are lucky to have you... my daughter was 16, my sons 13 and 11 when I was diagnosed 2 years ago... they have to help out more, but luckily I have slow progression. Hoping your Dad will as well.

The best testament for any parent with any disease is to keep participating in your "normal" life! Participate at school, sports, music, whatever your interests are... and include him when you get home. I certainly don't want my kids to put their lives on hold for me; however, I do need their help, patience and love when they're here. My 11 year old is my biggest help right now; sometimes its my other son, it's rarely my daughter as she's basically never here. But she does drive them, do shopping for groceries, etc. Remember to spend time with your Dad, and great advice on the previous posts.

 

[Chase_Corin]

My father also has ALS I am not as young as you but I currently live at home with my mom and dad to help out. Dad was diagnosed in 2010 and I know what your taling about when you say your dad was active and healthy. I remember my dad cutting down trees and hauling away huge logs on his shoulder.
Firstly it took a while to accept the diagnosis. For the entire family, we were in denial for a long while. Trying to say to ourselves that the doctors must be wrong, that there is no way dad could have this. It was hard for us to accept, even my dad had a hard time accepting it. It is hard to get your mind around the facts of the diagnosis.
I am glad you have siblings that will be able to help you. I encourage you to spend as much time with your dad as you can. Keep him in the loop of your life, don't treat him like anything is wrong. Also make sure your mom is doing okay she is the primary care giver and that can be stressful.
I think we all go through the whole gambit of emotions, anger is one of the main ones that come to mind but don't let that anger get away from you. I took some kickboxing classes to focus my anger without having it burst out of me around my family. I try to focus it into somthing constructive that allows me to get it out without hurting others emotionally if you know what I mean.
There are pleanty of people around here that will help you, listen to you and support you. You don't have to do this alone. We are a big, international support group. All the best *hugs*

 

[tammyg]

Hello Dude,
I am so sorry about your dad, I lost my dad too. You are so young to go through this, but you are at the right place. You are very smart and you are educating yourself on ALS. Dad has a tough road ahead of him, but with a son like you so caring it will make it alot easier..Give mom lots of hugs too. Nobody know why it picks our loved ones. All we can do is hope & pray that one of the trails will have a miracle in it. There are alot of them going on. Maybe this is a calling to you, maybe you were meant to be a Doctor, nurse, lab person, and this is your field. You have first hand knowledge and the other knowledge you are here getting yourself. Good Job. I am sure your parents are so proud of you. We will always be here for you buddy.

 

[Seen_89]

Hi,
I can empathize with you. My Dad was diagnosed when I was 21 (I am now 23). Seeing someone you love dearly go through such horrid disease is extremely difficult and I think you are a VERY brave for what you have to deal with. I can definite relate to seeing a fairly healthy person slowly loosing their everyday abilities. Seeing my Dad cope with the disease so bravely definitely made me appreciate the little things in life. Also being young and in school when your Dad has ALS is not easy. I know me personally, I feel a bit isolated from my classmates and friends because I feel they can't possible relate to what I am going through. I do have a few close friends that have really been there for me. I hope with time, I can open up and feel a little less isolated from my classmates.

When my father was dealing with ALS I went through different stages. First I was in denial, then angry, depressed, felt helpless and finally with a lot of prayers and thought I came to terms with it. At the end of the day, you have to be strong and I know you and your family can get through this. It is definitely a team approach. No one person can handle this situation alone and I am glad you have close family members to help. If anything, ALS will make you that much closer to your family. There will be good days and bad days ahead but my advice is that you cherish every moment you have with your Dad. Your Dad is truly appreciative of everything you do for him and I am sure he would offer the same love and help if you were in his situation.

I'll keep you and your family in my prayers and if you need any help or advice let me know. We are all hear for you!