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Alana

Active member
Joined
Jun 25, 2015
Messages
51
Reason
CALS
Diagnosis
05/2015
Country
US
State
CA
City
Long Beach
Alana here,
We have two teenagers, daughter is 15, son is 14. My husband has ALS. We did the general talk with them about what ALS is and honestly told them we don't know if this is going to be a slow/short process for Dad.

They are typical teenagers who don't want to help around house without the argument, fight with each other, show disrespect and many other minor things. I don't want to give them any guilt trip, but they need to make our family life more enjoyable without me getting on there case which stresses out my husband. I know they will be going through there own process and I know it's hard for them too. They don't talk about there feelings at this age as much and it has to be scary. I'm scared myself.

I will probably look into a therapy group for them that can help but just wanted to see how others may be handling things if they have teenagers.
Thanks for reading. Keeping my Hope & Faith & sending it forward to all.
Alana Cheers.
 
I will be following this thread and any profferred advice with a great deal of interest.
I have an almost 16 yr old son, and have wondered how to deal with these issues myself. I can only imagine having some form of therapy is important. I intend to do this for my kid, and will definitely be speaking with a few of his teachers and camp leaders in the meantime to let them know to keep an eye on him and take any opportunity they can to provide him with a sympathetic ear.
 
My almost 13 yr old has been in therapy and on anxiety meds since august 2014. He was having issues before we told him and then they skyrocketed. Therapy has helped immensely and so have meds...for him and myself. The stress, bad sleep, emotional toll, etc can take everyone down the depression/anxiety rabbit hole without you really realizing it. A therapist will help you.

My husband does skype sessions with a therapist. They help him a lot;he also takes meds. I think most pals do.

We haven't found a group that deals with grief for children. Few psychologists work with children and do grief work with them so be choosey.
 
Is there a FaceBook group for kids/young people with ALS in their family?
 
Decades ago, my dad told me that the best therapy is hard work. Funny thing, he would say that just when the hay needed to be reaped and bailed. :)

My kids were 15 and 13 at the time my wife was diagnosed. We involved them in everything. "Hey, Stephen, would you fetch me the medicine real quick" eventually became a daily responsibility where Stephen was in charge of crushing pills, mixing it into applesauce, and feeding his mom. We involved them in many tasks very gradually, and over time they each were nearly qualified to be nurses! (A bit of hyperbole, there.) They literally could do everything that I or any nurse did (except for intimate care and morphine). They operated the patient life independently, and could operate the cough assist and vent machines.

Inside, they sensed the seriousness of the diagnosis and the importance of contributing to their mom's comfort. They knew it was important to help out with other chores, to give me time to rest.

After the end came, I introduced them to a couple of therapists, who interviewed them and came to the conclusion that there was no therapy needed.

(Don't get me wrong. I don't mean to poo-poo therapists. I rely on them myself.)

--Mike
 
All good stuff. Thanks.
My kids don't do FB yet, thankful for that! I know later down the road they will pitch in and help it's just that communication stuff is hard. Because they don't see too much change yet they don't fully understand the process. All responses are better than non Mike!
Alana
 
G'day Alana. It's must be so hard, being caregiver to Ed and your children.

Slowly, slowly...I am not terminal, so don't feel 100% qualified here, but happy to tell you what works for us.
Firstly, what can you do, or not do, to lessen your workload? Not a single thing gets ironed in this house anymore. We've learnt to hang washing better to avoid this. This is not easy to give up, I took pride in my kids going to school in ironed uniforms. It's a matter of what's really important...a happy home or ironed clothes?
Wayne's sister has a cafe. Twice a week we buy tea from there. Thursday is roast day (yum) and Tuesday is whatever she's got going on...could be as easy as focaccia or quiche...it's more than someone doesn't cook. There's no preparation, no mess to clean up...a huge help twice a week.
The kids cook once a week (we are 18 months in...slowly slowly). Connor is 11. He cooks fish and chips in the air fryer. It's food...

They are responsible for their rooms. Granted, we haven't seen the floor in Carrahs room since October...I can live with that. When she's ready not to live with that, she'll sort it. I just insist on getting dirty clothes out daily. And changing sheets weekly.

Not sure what programs there are in the U.S. But the kids are part of a program called Young Carers. It's run through one of the government departments, they meet once a month with other kids who help, for whatever reason, in the home.

Yes, tell all schools what's happening. The high school has been told not to discuss it with Carrah unless she brings it up...
Her maths grade did slip, but because her teacher is on board, we are dealing with it. The school also has a program for kids dealing with grief. Carrah goes to that when it's on. I know little of this. What happens at school stays at school...to a certain extent! They need a place where ALS doesn't exist.

Connor is still in primary school. He works on reading/spelling with the deputy three times a week. I'm fortunate I guess, I worked at the school when all this happened, so everyone knows me and my situation well. I've talked to Connor and the deputy separately, Connor is able to go to him with any problems.

I guess, Alana, you need to pick your battles. Don't be afraid however to yell and scream...as though ALS isn't happening. You are still the parent...

We also got the kids a rabbit each when I first came out of hospital. They needed something of their very own to love and cuddle...mind you they were 9 and 11 at the time. The rabbits do help though.

Involve your kids, if they will. Make a small scrapbook of Ed's life (so far!) with them, make his life 'real' to them...something to include Ed without wearing him out...

I am seeing a counsellor myself. We have goals. My main goal at the moment is to see what I can get done in half an hour. I have very limited use of my dominant side, so half an hour is huge. It works though...tiny steps.

Most importantly Alana, DONT BEAT YOURSELF UP!

This is real life, not a movie. It won't be resolved in 90 minutes...

All the best to you...
God bless, Janelle x
 
Teenage years are tough enough with out adding in a life altering illness. My kids were 10,11, 14 and 16 when husband was diagnosed. Each one reacted differently--one ignored and withdrew, one was helpful, one got a little crazy, and one got angry...I always wanted them to help but always still had to ask and hated the extra stress that put on me.

I do think you need to try and let them have as normal a youth as possible, but asking for help is also important. they need to realize that things have changed and they do have to step up for the family. I took 3 of my kids to a family therapist and t he one that had the most trouble dealing with everything continues to attend. he had to try out about 3 therapists before he found one that he clicked with.

hugs to you! I am glad those years are behind me! :)
 
Shift kicker have you been in contact with the BCALS society? They have a summer camp for kids every June, and everything is covered. Tim's son flew in from Texas for his summer stay here, and they flew him out of Kamloops to the camp and back. He did not go this year as he couldn't come until after the camp.
As far as dealing with teens, try being a step-parent and doing it. We have a fairly good relationship but I have to say that I was quite strict with my kids, so it is a bit difficult trying to rev it down a bit so that he doesn't shut down to me. We had both of Tim's younger kids here for the summer that we started using a sling lift. I had them each take a turn being the patient while the other helped me lift them, then I was the patient and they lifted and transferred me. I kept a hospital gown in the bathroom, and they would put it over his clothes, and could potty him with out seeing anything that they felt would scar them. They rarely ever had to do it, but they knew how if they had to. Initially Gabe was pouty about learning, but I just talked to him, and asked how he would like to be treated if things were reversed. Last year we had an accident in the shower and Tim ended up on the floor, so I screamed for Gabe, threw on a house coat myself, and he helped me until I could get my son, who lived only a couple of blocks away to come and help me get him up. This was the first time he had ever seen his father naked, and with everything going on that was the least of his concerns. He is now 16, and has been here for 10 days so far, and has given his father the bottle a couple of times. Usually he comes and gets me so I can do it, but I was right in the middle of our pond cleaning it out, so I asked him to do it please, and he got right at it with no complaints. He did accidentally spill the bottle on his dad, but stuffed a towel as best he could down there. When I got in, I told him it was no big deal, I have spilled it as did another nurse friend who helps. I brought Tim into the BR and gave him a shower, and after we all watched a movie together.
I try to be as matter of fact as I can, and always remind them to put themselves in the other person's place and think how they would like to be treated. How would they feel if when they asked for something important and we rolled our eyes and pouted. I believe this should be practised for all things. Do onto others as you would have them do onto you.
And I pray a lot! I tell myself homicide is not an option.

Paulette
 
>hugs to you! I am glad those years are behind me!

you are one tough warrior princess :)
 

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It wasn't until I had kids that I realized why some animals eat their young...
 
Yes Janelle I will have to give up my obsession of tidyness!
It's all a new learning curve that can be done, just one step at a time shall work I think! It's always good to have knowledge, I feed off that. So thanks for all the input. When the kids go back to school in Sept I will be having a conversation with there teachers just so they are aware of our new lifestyle. Kids might get to play hookie some days! I too strive to be Zena, she's my hero Barbie! ( even if Lucy is a Kiwi!)
 
What a wonderful conversation!
 
It wasn't until I had kids that I realized why some animals eat their young...

Gil, I wasn't going to mention it but we did have three kids...:):):)

J x
 
Kids might get to play hookie some days!

That's the spirit! One of the battles to pick, really.

They go everyday now, but early on, they just wouldn't, such as the day after a big fall...it's great they care. Plus, they're human...they have to process this in their own way. Wagging occasionally is good for the soul.

God bless, Janelle x
 
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