ALS is bad, and then this dimentia...

[lisaohgee]

My mom has ALS-induced dimentia. It bothers me of course, but on certain days it bothers me more.

She forgot my daughter's birthday last month -- and my wedding anniversary is today and I haven't heard from her (usually she'd have her caregiver or my stepdad send an email or text).

I know this is because she doesn't remember because of the dimentia. And I know I sound like a spoiled brat, but it's things like THIS that make me saddest of all. Because she would have NEVER EVER forgotten these important dates. She would have made a huge deal out of them.

I just needed to get that out. Thanks.

 

[Ms. Pie]

First of all, Happy Anniversary. How many years?

Second, this is small potatoes. There are much bigger fish to fry, given her terminal dibilitating desease, the economy, wars, violence, being the best person we can be in our short existance, helping people in need, I could go on and on...
Don't waste your time kvecthing about you're poor Mom's forgetting things and just love her a lot before she dies. If she in fact has FTD then give her a break. She can't help it and if forgetfulness is the worst of it then count your blessings.

Have a great anniversary.

 

[Ms. Pie]

I apologize if I was harsh. I know these changes are hard.

 

[KissJ]

True, in the big picture of it all, bottom line...she loved you, remembered your b-day when she could. Life isn't fair! It just isn't.

 

[tammyg]

Happy Ann. I know it is soooo hard. You are not a spoiled brat. I am an only child and my mother can never remember how old I am. There is nothing wrong with her. except she might drink a couple to many beers once in awhile. She seems to have a perfect memory on dumb things though. LOL Just enjoy her while you can.

 

[TedH5]

Happy Anniversary! It is easy to understand why her forgetting key dates would be troubling as it is a reminder of her continuing deterioration due to this awful disease. That being said it is even more reason to cherish your time together and perhaps call her for the key dates she still most likely will not remember what she is missing but you will be happy that it is one more time you got to talk with her and tell her how much you love her!

 

[Alyoop]

It's a nasty debilitating illness, no doubt. What a lovely lady to remember those things. My MIL does not even know my children, occasionally sends them a card. Rejoice in the amazing lady you have in your life.

 

[brooksea]

If she has FTD, is she forgetting or perhaps just apathetic? There is a BIG difference. She can't help it, as frustrating as it must be to you. But just "forgetting" dates that are of importance to you? You are in for an emotional pity party right there! Apathy is nothing, compared to what can happen with FTD. Plus, she has ALS! HELLO!?!

Let's hope the FTD stays at this level and doesn't escalate. FTD is not Alzheimer's.

For more info, go to the FTD sub-forum to read research articles that might help you understand what your mother is going through.

FTD is very frustrating, but what you have experienced is something women have endured forever from men!

 

[asantiago]

You are starting to feel the loss of your mother. While she is with you physically you've lost her emotionally. We always need our moms, because nobody will ever love us like our moms did. Just because we get older and become adults and parents ourselves doesn't mean we ever stop needing the love they provide.

You're not being a brat, I've read your other posts and you love your mom very much. ALS just hurts from so many angles.

 

[lisaohgee]

I don't think she is apathetic. Forgetting my daughter's birthday is important to her because she dreamed so much of being a grandmother. And our anniversary is very important to her too. I know it is small potatoes. It's the little things that hurt the most.

We've been married four years.

 

[brooksea]

Lisa, I really hope you will research the FTD end of things. It would really help you understand why your mother may be acting out of character. Often times, people with FTD do a complete turn around, personality wise. An usually compassionate and thoughtful person can seem like a complete a$$. You mentioned that those dates were important to her, but in her mind they may make no difference, as she can no longer connect. It is very difficult for the person on the receiving end to try to remember that they (the FTD pALS) cannot control their actions.

I know you love her very much and you want her to keep that connection, especially with your daughter. Please try to be patient with her. It's not her fault.

Please go to this link and scroll down to Symptoms. I think you will gain more understanding of what exactly is going on with your mother.

http://alsn.mda.org/article/when-thinking-parts-brain-go-awry-als?refid=12

Good luck to your family.

 

[Laurenp89]

I just found this forum and signed up (though there was a slight delay on the registration confirmation email... grr!)

I know exactly how you are feeling. My dad's ALS went misdiagnosed for 2 years and he's having been severe cognitive trouble. He was a soft, gentle man who loved his children, his dog, his wife and his scouting. Now he yells at children outside, and follows my mom around throwing tantrums. He also leaves the gas stove on & when he could drive, would get completely lost. I cut my formerly long hair short recently and he didn't recognize me either. it was very sad.

but these things happen. and it's okay to be upset about them. let it out- that's why we're here!
just remember, through all of the hard bits, to love. love your mom, love your husband, love your kids, and love yourself. because you're going to need it.

 

[brooksea]

Lauren, welcome to the forum. Sorry about your dad. Just to let you know, there was a problem with notifications via email. None of us forum members could receive email from the site for a while. It was just fixed yesterday. Whoohoo! A gentleman named David runs the site all by himself, so when something goes wrong, it might take a while to get fixed. But we are a patient and loyal bunch here...

Also, Lauren, you may or may not know there is a sub forum for FTD. If you have any contributions, research or questions, you can post them there.

 

[Ms. Pie]

Welcome Lauren! I'm so sorry about your Dad.
Hugs to you

 

[lisaohgee]

Brooke, thank you. I understand why she is acting this way, I am just saying it's upsetting. In addition to everything else this disease takes from those who have it and their loved ones, it just sucks.