comforting a loved one with bulbar

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blonde

New member
Joined
May 11, 2020
Messages
2
Reason
Loved one DX
Diagnosis
9/2018
Country
US
State
CA
City
los angeles
Hi!
My loved one is in late stages of Bulbar, and can not communicate. I am curious what sort of comforts I can offer him. He still has some leg mobility and is not bed ridden. I have tried hugs and gentle leg massage. Please, if you have any words of wisdom :)
 
I also cannot speak, I have an IPad that can speak for me. My wife can understand most of what I am trying to say.
Al
 
What are his capabilities, Blonde? Can he move his head, use any kind of mouse, button, or switch, even twitch a muscle in his cheek? There are many text to speech options as Al mentions.
 
My mother is also in the late stages of bulbar. She communicates with a wonderful tool called a boogie board. Also, we try and ask her yes or no questions as she can nod/shake her head to answer us. She tells us children, with her voice, that she loves us daily. While to most its almost unintelligible, we know what she is saying and cherish it.
 
She tells us children, with her voice, that she loves us daily. While to most its almost unintelligible, we know what she is saying and cherish it.

jb, I don't know if it is considered poor form for PALS to post in a CALS forum, but hearing about the love shared with your mother and her children really lifted me up.

Thanks,
Bill
 
My stepdaughter has bulbar and in late stages. She has been communicating with a tobii device, using eye gaze, since October, when she could no longer write. Medicare pays for this. It takes patience on the CALS part, to make sure you give her the time to say what she wants to say, to not look over her shoulder or finish her sentences for her. We also use eye blink for lots of yes/no questions. It is a godsend.
 
Hi, I am a PALS with Bulbar symptoms. My son downloaded “Text to Speech” to my iPad; it is quite effective. He also bought me a Blue Tooth connected iPad keyboard; I keep them together in the nice carrying case.

Text to Speech is a free program, but I paid the $4.99 to remove the annoying pop up adds. If your family member still has good hand control, they can type in what they want to say, then press the arrow to make is speak. I am surprised at how good the program is... I also have a communication board from the VA to speak for me, but this is so much easier to take with me.

You can choose a ”voice” that sounds the most like you (there are a variety of male and female voices), and you can also adjust how fast it speaks for you. Any computer savvy family member can show you how to set it up and use it. I use it a lot as talking is very difficult, most people can’t understand me anyway, and my husband is hard of hearing, so communication is challenging. It even works well when I am on the phone. You can save commonly used phrases, too, so you do not have to type them in each time you want to speak. I saved a comment to the effect of “I use a computer voice to speak for me. Please give me time to answer you...”

Hope this helps,
Vera
 
Vera - This is very similar to the program I use. I use a Chromebook rather than an I-pad. I chose it for the longer battery life and larger screen, as I use it for other things.
 
Hi everyone, thank you for your replies.
My loved one was using the phone to type messages, it was a bit difficult for him but possible.
My loved one is in hospice now, and we can’t visit him due to covid. His hospice nurse he worked with at home isn’t able to go there either - complicated. We don’t get much info, and he has stopped texting. I’m not sure if it’s due to inability or desire to withdrawal. Either way, I still text him “i love you” or cute animal pictures to let him know i’m here and thinking of him once a day.
I’d love some advice on what to say, if anything, that might comfort him. I know that’s such a personal thing, but I do want to try my best to help in any way, so that he doesn’t feel abandoned...
 
I am so sorry. Can the staff faciltate facetime. Even if he can’t speak communicate you could see each other and you could say the words to him. Otherwise keep sending him what is in your heart and perhaps photos of special shared times?

doctors and nurses are managing to facilitate facetime in covid icus. It seems a hospice of all places should manage it?
 
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