Not sure what to do for my mom

[Curly Sue]

Hi My name is Sue, my mother was diagnosed w/ ALS in April 2011. She has COPD and has started smoking again since her diagnosis. I feel like she has curled up into a ball and is just witing out her time. I have taken over making all her appointments, getting her any medical equipment she needs, calling medicare to ask questions. My question is how long should I let her feel sorry for herself ( which I whole heartedly understand!) . I told her I cant fight this fight for her but she doesnt want to talk about what she wants us to do or help her with in the future! Thanks for your help ....and i sure hope i didnt sound cold hearted because i dont mean to sound it!
Sue

 

[joni51]

Sue I would think your mom's feelings are normal. Have you talked to her Dr about putting her on an antidepressent? Just be patient with her, let her know you love her, and will be there for her, but you will not be able to make her come out of this funk until she is ready. You don't sound cold hearted...just concerned. My husband still smokes away, I fussed at him, but he is grown, his decision. Not sure how I would act if I was the one with the diagnosis..Oh and a lot of days , even taking his meds, he is still down. Sorry wish I had more answers. Hugs to you!

 

[Atsugi]

Anti-depressants are absolutely necessary for everyone involved in ALS , in my opinion.

It allows us to focus on happiness, which is all we can do, anyway.

 

[notme]

The stages of grief are pretty much the same for everyone, but the majority of people seem to hit them all. Two stages that often go together are acceptance and depression. It's not at all uncommon. For family, denial is the stage that is most frustrating for the one that is sick, because the I'll person needs to be able to talk and wee-meaning family say things like "oh, it's just this or that".

Any. Variety on the above themes happen all the time. Sounds like your mom is in the depression and acceptance stages at the same time.

I can not speak on what med might help. But unless she is suffering from a mental illness, you will not be able to force her to do anything. With COPD she knows she shouldn't smoke, but as an adult, it's her right. She is probably thinking that if she has ALS anyway, it doesn't matter. There will come a point where she just won't be able to smoke. Perhaps it's also something in her life she wants to control in a new world where her body is betraying her and smoking is her method of having control over at least that one choice.

I think she has a right to be depressed and to feel sorry for herself. Shes been diagnosed with a condition that has very little in the way of treatment. The ALSA social workers will work with you and with her. I would give them a call.

 

[Katie C]

My mom had COPD with emphasyma. Eventually developed lung cancer. And would take off her oxygen to go out to her patio to smoke. At this point in her life, I wouldn't expect your mom to quit... it takes a lot of energy from a healthy person! I WOULD suggest you talk to her about anti depressent medication. Also, I'd make sure her paperwork is in order... power of attorney, living will, etc.

 

[alightsey]

My dad went thru those feelings as well. He has been on anti-depressants most of his life. They did give him xanax that he takes twice a day. But he has a strong faith in God and just decided that he was going to fight this horrible disease. And I do think having that fight attitude has prolonged his life. Just be there for your mom and support her thats the most important thing.

 

[kmendsley]

Your mom was diagnosed at almost exactly the same time I was...and let me tell you...I am still going through the stages of grief...specifically denial, anger, and depression quite frequently. It has been two months today to her diagnosis...wouldn't you be depressed too? Her life is changing, she is probably already seeing her independence slip away as you have already made appointments for her which 2 months ago she did on her own( I know you had the right intentions)

Think of it this way, Your mom was independent and was use to taking care of you. Now imagine if you were in her shoes. If someone told you just two short months ago that your life was significantly changed and would be over soon. Her mobility is taken away, her ability to make choices, calls to dr., short term goals, long term goals...all poof...taken away. Yes she can make new ones...and encourage her to do so to help her with the depression. But coming from a PALS who is in the same boat, and same timeline...know that the stages of grief take a while to get over. It is like experiencing a death. When you know someone who dies you just don't 2 months later say you are over it and accepted it. You are still sad, angry, maybe bargaining and this can go on for years depending on how close they were to you. She will have to accept her diagnosis at some point...don't rush her....let it be in her time.

Smoking is something she can control and something she chooses to do. Yes it is unhealthy, but if it is something she enjoys and calms her down at this point...really is it going to make that big of a difference? Once the initial shock is over she may cease doing it again, esp. if she starts to notice her breathing is becoming a problem.

I wish you the best for you and your mom. I hope what I have told you helps...just wanted to give you more of a 'inside' view as to what a PALS is thinking while on this train they did not ask for. Take care.

Kell Bell