Unable to communicate

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New member
Sep 26, 2022
Hello everyone my name is Ashley, I am here as a caregiver seeking advice for my mother Kimberly and her current ALS diagnosis. Around December 2020 my mother began to experience very mild but unusual symptoms like difficulty swallowing and the months following weakness and coordination issues, on June 17, 2021 she was diagnosed with ALS (aka Lou Gehrig's disease).

My mother is only 55 years old and has declined rapidly since we received her officially diagnosis. Fast forward to present day and my mother is completely bedbound and requires assistance with any and every task from eating to bathing, toileting, you name it. She also now is unable to communicate verbally making it even harder to meet her needs at times. As you can imagine this has impacted our family tremendously mentally, emotionally and financially. My father and I quit our jobs to be full time caregivers to both my mom and brother (who is super independent but also has needs of his own due to physical disability).

With all that said I am here because my mother was gifted a communication device (tobii dynavox) many months ago and she was so motivated and excited to use it when she first got it, and she did well with it in the beginning. However, that has all changed in the last 2-3 months. She seems to be refusing/unwilling to use her device anymore and has been trying to communicate through grunts, cries and screams making caring for her that much more challenging.

My father and I are at a loss on how to be of assistance anymore other than just meeting her basics needs and it's been absolutely horrifying for us all. As she seems to grunt and cry all day long. I am looking for any suggestions or advice from anyone else who may have gone through this or something similar. I have considered that these may be the early stages of dementia but if really hard for doctors to make that determination when they are unable to communicate with her in any way.

We really appreciate any advice we receive even if it's just a kind word of support. I thank anyone and everyone in advance for even taking the time to read this far.
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Hi Ashley,

Have you been in contact with her ALS specialist? You're correct that sometimes ALS comes along with FTD, a type of dementia. In that case, it can be very hard to understand what your PALS is trying to say. It sounds like you're doing all the right things.

Have you reached out to your local ALSA chapter? It might be worthwhile for a telemedicine visit with your mother's neurologist. Sometimes taking care of a PALS or anyone with cognitive disabilities is extremely challenging and frustrating. I've been trying to help my brother who has advanced Alzheimer's and is in a VA nursing home. He will only eat for certain people.

Does your Mom have a feeding tube and use BiPap? If so, is she complying with the use, especially the BiPap?

Sadly, sometimes PALS reach a point where attending to basic needs are all you can do. If she is at that point, maybe in-home hospice is the answer.

You're doing a wonderful thing for your Mother. There are just so many variables but it does seem like her cognition is involved. I've seen large poster boards that have pictures of various caregiving tasks. The caregiver can point to a picture and the patient can give some sort of signal if that's what they need. What does your mother do when you turn the Tobii on? Does she completely ignore it or seem to not understand how to use it?
Kim, you have ALS and are helping your brother who has Alzheimer's Disease?
Hi Kashley-B, Sorry to welcome you here. This is a very difficult situation you and your Dad and your Mom are in. Sounds as if you and your Dad are doing a great job taking care of your Mom. I was wondering about the very basics..is your Mom oriented to who she is and where she is and what day of the week it is. Does she get up into a wheel chair for part of the day? An anti-depressant might be helpful, but also as Kim suggests, she may be more comfortable if she were on hospice. How is your Mom's breathing? Please take care of yourself, as you try and care for your Mom.
I'm sorry to hear about your mom.

I would be thinking about something like a silent stroke, too, if the change was sudden. Admittedly, you are not going to take her for a CT to find out. You have received some good suggestions, though I am not sure what a hospice agency would do that is different from what you are doing, and if she is disoriented, adding strangers to the mix may not help.

If you are unable to ascertain her wishes at this point regarding her end of life, when she was more cogent, did she complete an advance directive or discuss what she considered to be adequate quality of life -- when she wanted to let go?
Wow. Kashley! My heart goes out to you and your dad. If your mom is enrolled in a clinic, their social workers might help you find the answers you need. If not, Hospice is a huge help; they sends a nurse each week, who could help you with stratigies they have learned. Medicare covers many costs and mom is eligible, no matter what her age is. Either way, my advice s....GET HELP! You and your dad need to conserve your strength so you can continue this ALS caregiving path. Stay connected too this group...it is a godsend.
Hey Ashley, I'm so sorry to hear about your situation. You both deserve some praise for your resolve.
( link removed but add .org to Bridgingvoice. Ashley. Bridging Voice may be able to help you. They specialize in communication for ALS clients. They are a non profit. They may be able to help you figure out a way to communicate with your Mom.
I would suggest Making a list of potential ways to communicate. Can she point? Can she look at pictures of common objects that she or you can point to? Does she understand you when you speak with her? Perhaps just getting to yes and no is a solution and you are showing her pictures.
I hope this is helpful.
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Ashley, I don't have any answers, but on some level, your mom knows you and your dad are still there for her and loving her. My husband is rapidly declining and is 58, so I imagine you are around my daughters' ages. Don't forget to be proud of what you are giving your dad. As the person in your dad's situation (caregiver with lots of help from daughters), I can tell you that he is in awe of you and your love.
KimT-I just reread my message, and it was unclear! I apologize. I meant it with awe.
Also sorry to read about your family‘s struggles. But the love you all share is heart warming. hope You and your dad can take care of yourselves too.
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