I feel so guilty

[SPMV]

I am new here and I feel terrible guilty. My lovely mom, 72, was diagnosed 4 months ago. I have read a lot about ALS and I don´t want her to go through all this. Sometimes I feel that is better for her to suffer a heart attack of something and end all this. She was always extremely independent, now she is not anymore. I never saw her cry, now she cries and screams for nothing. She still can eat, walk, barely can talk, but is deteoreorating quite fast. This is horrible. I don´t want her too suffer. I want her to die peacefully and go to heaven without going through all of this, but at the same time I feel guilty for wanting her to go ... this is horrible! I don´t want my mom to suffer, I don´t want my dad (75) to go through this, I don´t want that her grandkids have to see how she is losing every capacity. I love her so much that I don´t want her to suffer. I sometimes think that is better for her not to take the Rilutek, since that will only make the suffering period longer. I cry every day because I see her like this.

 

[HelenL]

SPMV, I'm so sorry about your Mom, ALS is truly a disease that affects the whole family. The screaming and crying may be part of the ALS known as FTD, which affects the brain function. I'm not an expert in that, but do know that medicine can help her. Please don't waste any time but have your Dad call her neurologist and tell them the symptoms. She doesn't have to live like that, and neither do you. Others here on the forum have dealt with FTD symptoms, and you can do a search as well.

Good luck, learn more about FTD and welcome to our forum family. Keep us posted...

 

[SPMV]

Thank you ... thank you ... thank you. Your prompt reply shows me that I am not alone. I will read about FTD. I hope she does not have another thing. ALS is more than enough.

 

[HelenL]

I agree that while it would be awful for her to have another symptom of ALS, it would explain the outbursts, and there are some meds she could take. Others in the caregivers threads can give you a better idea of what to expect, and it is always easier if you're prepared for it beforehand. Unexplained outbursts of anger, crying, laughing, are all symptoms I believe, though as I said, I do not have first hand knowledge of it.

Good luck, you're a good daughter to care so much about your dear Mom.

 

[notgivnup]

I am so sorry for your Mom's diagnosed, this is an awful disease but like all of them it is not pleasent and very hard to see a loved one suffer. Don't feel guilty you just want her suffering to end that is not a bad thing. Just help her the best you can that is all that is required, you cannot change things but you can hold on to hope and know she loves you and wants whats best for you also and to watch her grandkids play. {Hug}

 

[brooksea]

Nuedexta might help, if she suffers from Emotional Lability . I don't know if it is available in your area, but you can have it formulated.

 

[judyroyalglenn]

SPMV, I am sorry about your Mom's diagnosis. My mom's ALS progression was also fast. She was diagnosed in Sept.(ish) and died in March. She decided after taking the Rilutek for a very short period of time that she did not want to take it anymore. She knew she was going to Heaven because of her personal relationship with the Lord, so she was at peace. We want our loved ones here as long as possible, but it is hard because we don't want them to suffer. It's tough. DON'T feel bad about how you feel; I understand. I would suggest looking into how you want her to communicate once her voice is gone if you have not done so. There are computer devices such as eyegaze systems and other simpler ways of communicating. Check into seeing different therapist such as Occupational, and Speech. Plenty more knowledgeable people than myself on here to help you I wrote about my mom's journey on a thread titled a "blanket of snow" under past caregivers. The bold questions are beneficial to read if you would like to read them, but start with the earliest pages.
~ Judy

 

[SPMV]

Thanks to all ... there are so many emotions involved ... some days I want her here, no matter what, other days I just want her to rest. This is extremely difficult and quite horrible.

I will try to find out about the medicine mentioned above. She is just taking Rilutek right now, which is not covered by the insurance and costs around US$830 per 56 tablets. I heard about other medicines, but they are not found here.

Really thank you all!

 

[brooksea]

Active Ingredient/Active Moiety of Neudexta:
Ingredient Name Strength
DEXTROMETHORPHAN HYDROBROMIDE 20 mg
QUINIDINE SULFATE (QUINIDINE) 10 mg

Info found here:

http://dailymed.nlm.nih.gov/dailymed/mobile/lookup.cfm?setid=484e0918-3442-49dc-8ccf-177f1f3ee9f3

 

[skipper66]

I understand totally what you are feeling. My father was just recently diagnosed with ALS as well. I've had thoughts to of him just having a heartattack so he doesn't have to suffer everyday with this. You are totally no alone. My dad asked his primary physician to put him on the antidepressant Paxil. He used it 15 years ago for a short time after my mother passed away. The people on this site have been very kind to me. Please call your mom's neurologist and describe her symptoms. They will be able to help. A big hug to you. You can add me as one of your friends on here if you'd like. Be strong and get some comfort in the fact that others care. KiM

 

[EGBAR]

I use Nuedexta and it does help, I hope you can find it there.

 

[SPMV]

To Kim (skipper66): Thanks Kim for your post ... now I do not feel so alone. The dream of a heart attack is a shared one ... I also thought it ... shame on me, but it is horrible to lose a little bit of her every day.

Now my mother has a lady that helps her everyday in her daily tasks. My mom told me on Sunday that it´s difficult for her to take a shower because she cannot breath with the water in her face. She also asked the lady that is taking care of her to please keep her clean and her hair well combed when she cannot do it by herself anymore because she does not want my father to see her not her usual way. Of course this made me cry. On Sunday, I had to put her perfume on her since she cannot do it by herself anymore. We really don´t know how to act. We are going with our usual lives and acting as normal as possible, but I don´t know if this is OK. Should we act differently? What is better for my mom? For her to know that we are suffering for her? For her to think that life keeps on going? Why is this so difficult! She is still doing her normal things ... swimming, going to her charities, going to the supermarket, going to mass, playing cards ... but everyday a little bit slower and everyday with more difficulties. I am amazed of her will to keep doing her normal things ... because I know that she knows that she is dying ... oh God, I am crying while I write this. Thank you all for being there and for listening (reading).

 

[marypat]

I'm knnow this is hard for you. Theres no right way to act,it's hard for everyone. Help her with what she asks and try to b aware of things that she use to do but is no longer doing(ie: i use to wear a necklace that went with my outfit everyday, now i cannt change them it gives me happiness when someone says to me do you want to wear a different necklace) One of my biggest fears is losing myself so I do anything I can to do things that makes me feel like me. I imagine your mom might feel the same way...she wants to be normal. you and your family are in my htoughts and prayers

 

[Pandabear]

I feel the same way, Mom is 74 was diagnosed Jan 2011 and is now in hospice care, we dont think she has much time now..I want God to take her soon as well, she should not be laying in a bed and not being able to eat, talk or move..please dont feel guilty...
by the way, my mom took that rilutec and almost killer her..she got so sick and it hurt her liver...she wanted to live so badley that she continued to take it until she couldnt take it anymore..it was the only hope..then the feeding tube made her so sick and nausea..so from there was the beginning of the end..she doesnt want any ventilators so we are now just waiting..so painful..you are not alone!

Pandabear

 

[AKjo]

SPMV, I would be as "normal" as possible, and that will change every day. It is wonderful that your mom is continuing with the activities that she enjoys! A good attitude goes A LONG WAY with ALS. Act as if you have always put her perfume on for her, as well as any other tasks that you start doing for her. Bring humor into it if needed - a lady likes to look good, right? No matter how she gets there. Her life IS still going on; help her to take pleasure in anything she wants and can still do.

So sorry this disease has entered your lives.