Help! Mom's not making sense anymore

[monica997]

Hello all,
This is the first time I've used this site, I am here because I need to ask a question. My mother has had ALS for over 2 1/2 years. She was officially diagnosed in 2009 but the symptoms of the disease had been happening for over a year before diagnosis. My father and I are her care takers and have been coping with things the best we can but she's now at the later stages of the disease. She can't talk, use her hands, legs and constantly complains about being short of breath. Lately, what has us more concerned is that she is in the stages where she constantly spits out saliva and now she's been saying that she feels a cord in the side of her mouth and in this cord there is a ribbon. Now, I looked at her like "WHAT?" but she insists it's there. My dad and I have checked constantly just to put her mind at ease but she keeps complaining. Today, she told me that the cord is now at the front of ther mouth, so, I checked and nothing. Has anyone had a patient go crazy at some point? I know the disease does not affect the brain but I believe she is going insane. I wouldn't blame her, in the position she's in, I'd probably go insane too. I am just trying to find out if ANYONE has ever heard this from an ALS patient before or something similar has happened? Thanks for your help!

 

[hopingforcure]

Maybe she means that is how it feels like a cord is pressing, just guessing. If not Frontal lobe dementia does happen sometimes with ALS. I think it is worth mentioning to the Neuro at Clinic, or calling to get an earlier appt.

 

[Alyoop]

Monica, does your mum have any breathing assistance? If not her O2 levels may drop at times causing confusion, just a thought.

 

[penny1]

It may be possible it is a pulled muscle or a muscle twitch in or long her neck or throat that feels like a cord to her. Consult with her Dr. using her words, they probably have heard it before.

She's not crazy, it just feels like her thoat is.

Penny1

 

[Lavender Lady]

Having alot of saliva is a very typical symptom. There is medication that can help, also several people use a suction machine for secretions. Are you working with your local ALS association? Is it time for hospice to help you? I wish you all the best. Your mom is fortunate she has you and your dad.

 

[ZenArcher]

I don't know what is going on with your mother but realize that ALS can also present with Frontotemporal Dementia. I'm not saying that is the issue but you should know about it and discuss it with her doctors.

 

[Marjorie R. Wilcox]

Hello. I don't think she has a mental problem or the frontal dementia. I think she is just lacking air. I have taken care of clients who have done similarly. A woman had a tumor in her liver, the size of a soccer ball. She was fine as long as she didn't bend over the dishwasher to empty or fill it. She didn't get enough air then, and would say the funniest things. It would happen other times too. At the table, my son asked her to please move over, he didn't have enough room to sit down, and she replied, " I wouldn't like any rye bread, thank you." She wasnt' demented, but just lacking air, the doctor said. Frontal dementia, I understand causes what I call "gliches" in memory and behavior...... like I asked my PALS to please take out the garbage and he went and got the mail. I asked my PALS to get me a book of stamps and three days in a row he got me a book of stamps and couldn't remember he already did. He is mentally fine.... except once in a while these gliches occur. He isn't getting enough air. He perspires readily, breathes with his mouth wide open, and perspires in his sleep. It is near time to use the bipap 24/7 or consider a trache.

 

[Katie C]

The common belief that ALS does not effect mental processes is now being challenged by some members of the medical community. And it's not an either/or having full on FTD or not. There is a continuum of cognitive changes. Some are minor all the way to frontal lobe dementia. It sounds like maybe your mom is experienceing some kind of minor aphasia, where she is having trouble finding proper wording. This could in fact be related to low oxygen levels or high CO2 levels. Of course it's impossible to really know what's going on just from what you've told us, and talking this over with her doctor might help you find an answer.