I'm not doing this right

[ccox]

Hello all, my last post was in early June. My mom (68) was diagnosed in June and has an appointment with an ALS specialist in San Antonio (Dr. Jackson) next Monday.
Why am I not completely freaked out? I love my mom. I don't want her to die. I find myself spending time thinking things like "will this be out last Mother's Day, 4th of July, etc/" I just can't really wrap my mind around it I guess. She's using a walker, has very slurred speech, and other slight difficulties, but things haven't really changed as far as how she relates to the world. I call every couple days. It feels like there's this giant elephant in the room and no one is talking about it. I want her to go out and live life, do things, but she's "just reading a book" everytime I call.
I'm rambling. Could it be that it's all still too new? I'm in denial? She's in denial? I feel bad for not feeling bad. Is that stupid or what? My brain keeps telling me that she's not going to die tomorrow and I need to hang in there to help care for her when the time comes. Otherwise I'll be crying for rest of her life and that would be hard on all of us.
Thanks for letting me vent. I just read everyone else's posts about how upset they are and wonder where I'm going wrong.

 

[Al]

Hi ccox. Who says you're wrong? Just as this disease is different in so many ways so is the way we handle adversity. Just because you are not wailing and gnashing your teeth does not mean you are not feeling pain. Maybe you and your mom are in denial. Who says that is not right for you at this time? A year from now might be a little long to be in denial but for now it may a coping mechanism. There are many stages to accepting a diagnosis of ALS and some people take longer to work through them. Don't be hard on yourself if you don't have to be.
AL.

 

[CindyM]

Hi Ccox- Al is right. There is not right or wrong way to feel or act. Back when the Docs were more sure I had ALS I read a book by a Swedish woman titled "Rowing Without Oars." She celebrated and cried over each "last holiday" for the entire two years between DX and her death. Everybody has their own way.

I'm betting you will have a variety of emotions over time. For now, just keep loving each other and being glad for the time you have together.

Regards, Cindy

 

[saska]

My brain keeps telling me that she's not going to die tomorrow and I need to hang in there to help care for her when the time comes. Otherwise I'll be crying for rest of her life and that would be hard on all of us.

Hi Ccox,

Your brain is right.... Al and Cindy are right, too. It is so hard for people, particularly women, to not compare ourselves to others. We also are waaaay too hard on ourselves much of the time. You feel bad for not feeling bad? But...that's feeling bad. You are fine...you ARE doing this right -- right for you, right for your mom, right now.

Take care and try not to worry about how you should feel. Based on your post, I think your predominant feeling is love for your mom, and that is so very, very right.

Sharon

 

[Rhonda]

Hi Ccox,
I agree with all of the above. There's no right or wrong to how you handle the diagnoses. I'm 46 and have twin daughters 26 and they both have been different in how they have handled it. One is over protective and the other is distant, it's been a year since my diagnoses and the one that has been distant is starting to come around. We are very close I thank God that with 4 children we have managed to always be close. I have to let each child handle it the best way they can. I know they love me and will be by my side for the hard times. I know your mom feels that too. My kids think I should be going and doing things too. Sometimes us moms are just as happy reading a book or sitting on the deck watching wild rabbits play in the yard. When your mom is ready to get up and go she will. Take care. Rhonda