my mom has had bulber als for two years

[superkate]

my mom had had bulber als for two years and as she is slowly declining i am stressed to the core for her and for my father who is the primary caretaker for her. i have wanted to talk to people going through this but have been scared, but now im more afraid then ever. that my dad is stressed out and does not want help and that my mommy, who wants people around her but will not let them help. My mom lost her voice first, then her ability to eat, and now it is her hands and legs, she has given up using her talking machine not because she cant use it but because she is frustated that she feels she is missunderstood.

 

[Phil M]

Hi Kate, I am in the exact same condition as your Mom. feel free to ask me anything. Glad to help if I can. God bless..

 

[BarryG]

Kate, me too. I still talk with my machines because it would drive me crazy not to but I haven't spoken, drank or eaten with my mouth since January. It is so hard and frustrating and if we can help in any way just let us know.

 

[superkate]

oh my gosh, I didnt expect to talk to some going through what my mom does but I know that you are and wonderful person to post to me as you are going through your own stuff. I think that you are wonderful and i thank you very much for reaching out to me. I know that you must be blessed and I thank you from the bottom of my heart.

 

[JeffP]

superkate you found the right place.there are so many going through what your mom is and you that can help.just to listen or get your frustrations out were here for you .remember this youll never be alone in this .many will reach out with openarms to help you and mom in anyway that we can godbless jeffp

 

[superkate]

wow, thanks. posts here i feel like some one part of something. I have lost comunications with my brothers though this journey and now i feel like i have brothers and sisters though this. i thank you for your very kind words and hope. I hope and I am very glad that you also do> thank you.

 

[ghii]

superkate, I first learned my husband has Als February this year. I trace his symptoms to over 2 years ago. I felt the same way when I first came here; it helps me immensely dealing with the disease. To know people actually with the disease does help a lot with fears of the terrifying unknown. Suffices to know we are not alone in this. Mercifully my husband is still able to walk though slowly, drink half a cup of milk with difficulty and talk - not clearly but still able to make himself understood.


ghii

 

[superkate]

thank you from the bottom of my heart. you are wonderful and i truly thank you. and bless all that you do and are troubled with.

 

[Phil M]

Keep in mind Kate. We like to pretend that theres nothing wrong, and be treated no different than before, but the day will come when we know that we have to be helped. And I enjoy every minute I can get with my loved ones. I tell them, just because I am quiet, doesn't mean theres anything wrong. I just enjoy the company.

 

[superkate]

you are very wise and better saying it then my mommy can. she was raised not to tell the problems and because of that we as childred were not told of her diagnosis. because her mom my grandmother had ALS and we loved her and well it is a lot of stuff. thats all. It is most frustrating not talking about it for me. Mommy is very proper and private and well that just leads to unknowing. thats all.....I am just thankful that I have the chance to talk to all-you-all and I thank you very much. It give me smiles.

 

[superkate]

im sorry. i dd not mean to offend you.i know that i hurt your feelings and that was not my intention. sorry.

 

[Phil M]

Don't worry. You can't hurt my feelings. You can ask me anything. I'm not over sensitive about it.

 

[4mymom]

Kate,

I had to take a deep breath when I read your post. I am experiencing the same thing with my Mom. She was diagnosed July 17th of last year with limb onset and is now to the point (only within the last 2 weeks) that she can't really speak at all. She wants and tries so hard to speak, but like your Mom, she gets frustrated when we can't understand her. She still has enough strength to use her lightscribe, but gets upset to the point she closes her eyes and shakes her head by the time I can get to it. Same situation as you with the assistance when needed. Mom has always been private and kept problems to herself also...she never wanted us to worry about her. She still has that mindset, but has slowing started to let us help her more. My father is the primary caregiver, and she's had to rely on him for almost everything now. He hasn't been able to get a real break for more than a couple of hours at a time since March, because while Mom wants to have people around her...she only wants Dad or myself helping her. Hopefully your father is getting enough rest himself!

I understand your fear, as it usually keeps me up a few extra hours at night myself. If you need anything, please feel free to ask!

Chris

 

[superkate]

Chris,
Thank you for telling me that you are in the same situation. I really does help to know that im not the only losing sleep over things. Dad does get little breaks now and again but mostly He does it all for her. The problem I havent mentioned is that I am many states away from them so my only communication is via email with mom which is sketchy at best and phone calls to dad which always seem to be made at the wrong time for them. anyway thanks for listening. Hope that your mother is doing great and is happy and that so are you
thanks
Katie

 

[Cereus]

Hi Katie,
You sound like a wonderful daughter! My husband has Bulbar ALS and FTD (a type of dementia). What little speech he has is very difficult to understand. We have two children, 22 and 25. One lives 1000 miles away and the other is in South America. Use email, snail mail, postcards and don't give up on the phone. Texting is great too. I've had to tell people I can't talk and now they are afraid to call. Your post here is a good reminder. Ask your dad his schedule and maybe that will help. You may want to try Skype. My husband gets a kick out of seeing our daughter while we "talk" on the computer. Most important is for you to have fun and frequently share your adventures with your parents. Nothing make us happier than hearing about the everyday normal lives of our kids.
Take care,