Als

[daisygrl]

Hi I have a 27 year old son that was diagnosed with ALS 05/2012. I am not dealing well with this. I cry all the time and want to help and he is not letting me help. I want to spend time with him and not able too cause of no transportation to see him. I might get to see him once a month if that. Today he told me I was smothering him but I dont know how I am smothering him. I text him maybe every other day to check on him cause if I call him I cant understand him at all. So we text. He said he was going to start being selfish and just concentrate on himself and not worry about anyone else. I sorta understand that but sorta dont. He told me he is worried about loosing his own life. He said he needs time to reflect on his own life. He said he feels smothered not physically but mentally. I am so scared of loosing him it consumes me. I have issues with depression as is and that does not help matters. I just wish I knew what to do with all these feelings I am having.

 

[vickim]

Hi Daisygrl

Well talking about your feelings is a good start. You may need to seek out some anti depressants. You are dealing with a terrible illness affecting your child and it is understandable wanting to be near him. It sounds like he is still comming to grips with his illness.

More than likely once he accepts his illness, he will be more willing to let you in. Coming on this forum will help. Everyone here is understanding and full of insight from both sides of illness. I am sure people will chime in and give you advice.

 

[ottawa girl]

Oh, how I feel for you. And for your son.

Firstly, please seek counselling ASAP! You cannot go through this alone. Check with your local ALS office. They have wonderful support groups.

Secondly, I know exactly how your son feels. My family initially smothered me too. I couldn't breathe. It was over the top. They love me. My parents were sad. I was sad. Finally got the gumption to say something like " please, I know you love me, but please don't make me sick before I'm sick". They understood, for the most part. I have to remind some of them. It's a hard tough road, and some of which, we PALS must walk alone. We need to find our way and decide what it is we want. It's not that we do not love our families. Sometimes we love them too much to share.

He will find his way. I'm sure he loves you. Try not to cry when you see him. Unless he does.

Stay close here. You will be helped. The people here are the best!

 

[daisygrl]

Thank you for talking to me. I am sure that is what it is. I am going to see a counselor on monday cause I suffer from depression anyways. I talked to a lady today in the Dallas Chapter today about getting to a support group for ALS. I have been trying to do things like help him get help with items he will be needing. I got in touch with a lady today that wants to talk to him and make sure he is getting what he needs to deal with his ALS. She is with the ALS chapter there in Dallas where he lives at. I have been doing so much research and calling and emailing people to get him in the clinical trials for like NurOWN when it comes to the states and Neuralstem when they start a new one up. I dont know how I am smothering him cause I do not get to see him hardly at all, once a month or every 2 months. That is so hard. I cant talk to him on the phone anymore cause he is hard to understand so we text. I know he wants to be independant while can.

 

[Katie C]

Daisy after reading your post, I can start to see how your son is feeling smothered, even without your meaning too. Assuming there is no dementia involved, and there doesn't seem to be, you really have to let him make some decisions on his own. He has to decided which, if any, clinical trials he wants to do. He has to decide which, if any, support groups he wants to be in. It's hard for us to let them ago as adults under the best of circumstances, let alone if they're facing this monster of a disease. By your own statement you're making calls and sending e-mails and "doing all you can..". My guess is THIS is what feels like smothering. He truly has to take this at his own pace, and frustrating as it can be, you need to let him do that so you don't ruin your relationship.

 

[Cricket]

I think I can understand your son. As kids, we grow up striving for independence. Parents learn to let go so we can become self confident and self reliant. When I was diagnosed, i made it clear to my mom that i didn't want her to do certain things. I did this to protect my relationship with her. I want to laugh with her and enjoy her company without her fussing over me. If she starts doing everything for me, i am afraid that she will burn out. Also, it makes me feel like i am two yrs old and i don't like that. But you know what, when i got the flu, the first person i called to help me was my mom. Healthy boundaries are important and it feels good when they are respected. I hope you can find the proper support and the tools to help you deal with all of this. Keep in touch.

 

[CRR10]

Hi, I am a 28 year old male that is in limbo land with regard to a diagnosis. However, my chest has fully caved in and the doctor suspects some type of MND, however, not als because of clean EMG. I understand your son's frustration as I have the same issues with my mother. I have days when I am so sad I do not want to speak with anyone. Also, my mother kind of has her head in the sand. I would feel so very fortunate to have the support you're trying to give your son but I do understand where he is coming from. I got hit with a ton of bricks as I am already on Bipap for unknown disease. I really would like to speak with young person that is suffering from MND. Please tell your son that we are out there, and I know where he is coming from. Please feel free to send me a message.

 

[JamieL]

Hi Daisy. My children are 4 and 6, and if I allow myself to fast forward 20ish years and imagine them with a disease like ALS, I can fully understand your actions. But as a 36 year old, I can see where it would make me feel smothered if I was the one with ALS and my mom was doing these things. By the way, I also live in Dallas. My mom is PALS and she lives in Oklahoma (Durant area) where they have no resources. They don't even own a computer. So I've gotten to indulge my "over helping" urges because they NEED me to. Your son doesn't NEED you to. He is a young, independent man who lives in a very large city with lots of resources and the ability to seek them out when and if he chooses.

We did get my mom into the ALS Clinic at Texas Neurology. Her doctor said the ALS Association chapter in Dallas isn't very active for whatever reason. He suggested we contact the MDA chapter here instead. They have a support group that meets in Plano and are much more active. My suggestion is you give your son all the info you have gathered, maybe mail it to him, and then let it go. Let him do with it what he wants. It sounds like he is begging for space to breath and think and grieve. So give it to him. As hard as it is. Give it to him. So you've gathered the info, you've sent it to him, you can feel you've "mothered" him, and close that door. But leave the window open for when (if) he reaches out and wants your help at some point. Get some support and help for yourself. Then you can be the best mother possible for him.

Aaaaand I just realized the only thing separating "mother" from "smother" is the letter s.

 

[johnnyliverpool1]

a family member of mine had depression...over a 7 year period i realised that their perception of things was skewed...a loss of some reality really...get treatment for your depression and just maybe things may not seem so bad...i sure hope so......johnny

 

[dianan]

I think your son is a lot like me. He just wants to get away and feels like by you contacting him all the time, it makes the condition more "real". My mom has ALS and it's really hard for me to see her. I would rather not see her the way she is and remember how she was before the illness, but I go to see her because she wants me there. She would have me visit her every day if it was possible. I live in another town as her, so once a week is difficult to make it there. So just give your son some space. For the depression, the health food store has a lot of things that help that are not harmful like prescriptions. In fact, prescription drugs are counterfeit (copy-cats) of the real thing that scientists pull from natural elements then create their own synthetic drug in the lab--including aspirin! I just found that out recently.