Help my mother

[Momhasit]

Hi everyone,
Not sure where to start but I wish I can find some kind of help...
Mom was diagnosed a bit more than 2 y ago with bulbar onset.
It has progressed enormously in the past months to the point where she does not talk, eat and move anymore; just slightly her head and one of her hands.
Every week we see the progress and she is on bipap 24/7 and have a PEG for food and meds.
She does not want tracheo.

It breaks my heart and makes me mad for being unable to help her more but I dont know how to give her more comfort and help her to sufer less.

She is suffering, especially with the damn saliva and mucus in her throath.
At the moment, mucus in her troath is driving her crazy and me too. Every five minutes we have to dry her mouth and suction some of the mucus. Authough we have help, she only wants me and my aunt to do it ...but I am exausthed and it is difficult to be by her side all the time.
If other people will do it; she just stares at me, like asking for help and I just feel I have to do it. In 2 weeks I have to go back to work (2 h away) and I am not sure what to do. If I should give up my work.
Tonight she wouldnt let me get out of the room. After some saliva crisis and calming her down I left but with my heart broken as if something could happen and I wouldnt be there.
And that scares me because it feels the end is approaching. Yet, I am not sure what to expect anymore and I need to have some sleep to take care of her the whole weekend .

Thanks for reading and for sharing here.

Love
Sandra

 

[Candle2014]

Hi Sandra

I'm so sorry for you and your mum. However you do need to sleep. As other people are there to keep an eye on her and know how to use the equipment properly then you must take the time. Whether or not you can take time away from work is tricky. Can you afford to do so? Will work allow it? Without knowing how long you have with your mum it's a difficult call. Has she had treatment to dry secretions? If it's not doing the trick can something else be offered? I know my mum asked for suction when often nothing was suctioned so it may be a "feeling" rather than actual secretions which is bothering your mum, perhaps due to anxiety.

Sorry not to be able to offer more reassurances. X

 

[GilWest]

There are many great meds that can deal with the symptoms of ALS. I would not opt for a trache either. Some docs will reccommend it for sucitoning, but it is just too easy to hook that Trilogy up to it and even easier to change the settings to full-time mechanical ventilation.

 

[MaxEidswick]

>It breaks my heart and makes me mad for being unable to help her more but I dont know how to give her more comfort and help her to sufer less.

many here say anti-depressants help both CALS and PALS -- you may also look into anti-anxiety meds to help her ...

welcome!



Max - Saturday, January 03, 2015 1:03:09 PM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


.

 

[Barbie]

Please Sandra, take a week off from your responsibilities and let others care for her. You sound like you need to recharge your batteries! take that time to have fun and relax and not worry about ALS and your mom. at the end of the week, you will be better able to make long term plans--and I promise, you will be a better caregiver for it.

Barbie

 

[SMP51]

Sandra, I am just heart broken for you, you sound exhausted and rightly so. Please leave the room when someone else is helping your mom. feeling guilty will kill you. My husband would much rather have me do everything for him if I could/would! but I am so much better for him when I have a little breathing space. Take care of yourself so you CAN take care of her
peace
Meg

 

[Nuts]

Barbie and Candle are right, you need a break, and you can't be your mom's only 24 hour caretaker. If you won't take a break for your own sake, take it for your mom's. I'm sure she's scared and trusts you and your aunt, but she needs to learn to trust others so that you can take some time for yourself when you return. When someone else is willing to help, you might have to leave the room so she can't stare at you--then she can focus on her other caretakers. Also, keep in mind that her mind is intact (unless there were other issues before ALS took her ability to communicate). Perhaps you could sit with her and explain some of what you've shared with us.

You say work is two hours away. Does that mean you live elsewhere, or are you driving 4 hours a day? Do you have someone else to care for her while you are at work?

 

[Janie H]

Prayers for you Sandra and your mother.

Janie