Teenagers dealing with Dad's ALS

[Phil's wife]

Last year my then 16 year old went through a very tough depression and seems to be doing pretty good now. My 15 year old daughter has been doing well - so we thought - but she broke down in the last couple of days. Last night she was so upset she cut her ponytail/bun off. The majority of her hair is about 2 inches ! Of course now I am paying whatever it takes to get extensions before she returns to school. You know how hard it can be for something like this.

Anyway, I am heartbroken that I didn't realize she was feeling so badly before this. We will get back into a family therapy through Duke but just wondering if anyone has any advice on how to communicate with the kids on this. We are open with medical issues, it's the feelings that are difficult to expose.

Thanks for all of your help through so many topics.

Stephanie

 

[Lavender Lady]

I understand only to well as our 2 boys 11-13 are struggling to cope with me being sick. Our 13 year old is failing some of his classes. We are in family counseling and now he is refusing to go. I was recently told about a web site it is : als411 for teens/young adults You should check it out and see if you want to introduce your daughter to it. I will say a prayer for her and your family. I cannot begin to realize the fear that our kids are having. Bless you all.

 

[brooksea]

Sorry, don't know what to tell you! We have a ten year old that has issues...major issues! He's been in therapy and we've joined him. I don't know that it's really helped in the respect we were hoping.

 

[Miss]

Stephanie, I am so sorry. Daniel is having trouble, too. Like you, I didn't see it right away. I found out with a bad progress report. I thought we were okay because we talk about everything so much. Obviously I was wrong. I am looking for a therapist for him as we speak. If I learn something earth shattering our ground breaking in dealing with teens and PALS, I will certainly pass it on!

 

[pudge44]

My youngest daughter is 22yrs old and just graduated from college & has dropped everything to be with her dad, she has often cried and been teary eyed and I see how painful it is for her to see how her dad's illness is changing him from what she has always known him to be :0( it really affects the children and adult children terribly e.g. my son just re deployed for the 6th time to the middle east and he did NOT want to go, he worries more about his dad than being in a dangerous war zone, that is saying something for the stress the children & adut children feel all the time.

 

[Phil's wife]

I am so sorry to hear so many of your kids are having such a difficult time. Rox, thanks for the ALS411 site. I took a look and will let her know about it and I also printed a copy of the booklet "When Your Parent Has ALS - A booklet for Teens" and will get copies for all of the kids made and bound. It looks like a good resource for them to read -- when and if they will take a look. It seems like kids at this age don't want to feel the pain so they block out many things only to find it all comes crashing in on them when the load gets too heavy. No child expects to lose a parent and to see their parent change and go through so many tough things must be almost unbearable. I will include all of your children in my daily prayers.

Missy, does the VA have counselors their ready to help? We were introduced to a counselor at Duke on our last appt who counsels any or all of our family for free as part of the Duke oncology department. I will be giving him a call and scheduling something very quickly. Hoping they will all go with us and it will help.

 

[Miss]

No, unfortunately, the VA here is very "stingy" with services on all fronts. I cannot seem to get basic care beyond the morning CNA, much less anything for the family. I'm trying to find someone in the private sector here that has a good reputation dealing with teens and parents with terminal illness.

 

[Lavender Lady]

Another thought is to check with local hospitals they often have grief support groups. Lifting all of our kids in prayer tonight.

 

[nate_alvar5633]

I am a 15 years old and my dad also ha ALS. Its very hard for kids, including myself to go through this. I often have breakdowns and struggle with little things in life. I have a lot more responsibilities and definately don't live a normal life. I am in the same shoes as all these other kids and its hard!

 

[Phil's wife]

Nate, I am so sorry you are having to deal with this. You are the voice of all of our children here and I know all parents join me in sending you a big hug and wish we could take away the pain you feel every day. Reach out to your good friends and family for support and don't be afraid to express how you are feeling. I bet there are many around you who want to help somehow, stay active in things you enjoy the best you can and that will help relieve some of the stress. I will include you in our daily prayers.

 

[maryc53]

I am so sorry Stephanie. I know exactly what they are going through. I am 15, and I just lost my Dad to ALS this past January. If any of them are interested they can feel free to follow my blog. I'm really trying to communicate with other teenagers about the whole grief process. So, if they are interested here is my blog address. My Life In A Nightmare

Mary

 

[kelly]

Marcy...I just read your blog....and i must admit...I bawled my eyes out! YOu are so grown up....and yes this path is hard. I have two young boys 7 and 9..they have no memory of their Dad ever walking or talking. I will look to you for advice on how to help my boys. Thanks for sharing your blog. Your Dad sounds like an awesome MAN! Cherish all your wonderful memories.

 

[Larry48]

I'm sorry about what some of you and your kids are going through. My wife is sort of depressed about our daughter having ALS. Last weekend we went to a support group for relatives of people with ALS/MND and there were some teens and 20 somethings there who were having hard time dealing with loved ones' illness. Maybe seek out if they are support groups in your areas.

 

[Katie C]

During the time of Glen's illness, his father, mother, my mother and youngest brother all died. Shortly after Glen's death, his uncle passed away. My 26 year old moved home about the time of diagnosis to help with taking care of his dad and yes, it was REALLY hard. We have a wonderful grief counsellor, who dealt with the grief of losing the Glen we all knew even before he died. She also runs grief groups. Getting support is so important... and for teens and young adults, if they can be in a group where they learn that everything they are feeling is NORMAL for the situation they are in..it's just immensely helpful.

 

[HarlequinHeart]

I know how this feels, as I am also quite young and am losing my mother to ALS currently. My father passed away when I was eight years old, so I also understand the feeling of being much younger and dealing with the death of a parent.

Truthfully, as cliche as it is, time does heal all wounds. Until then, I'd focus on either group or one-on-one therapy (whichever seems to be more effective for the individual) so long as they are willing to go, and perhaps mediation if the depression is severe enough to call for it. (I am on Prozac for this reason.)

Everyone copes and heals differently, but I've found that the more often we talked openly about the situation either with my father, or now with my mother, the easier it became. It's not easy to discuss, especially for some, but the more I can openly discuss concerns the more relaxed it seems to make me. I am now able to joke and have a few laughs with my mother, despite her condition, and each day it makes it a little easier.

Perhaps finding others for your teen to speak with who have gone through similar situations will help?

Good luck, I wish your family well through this tough time.