What to say or do with someone who can't talk or move

My father has ALS. He is paralysed and cannot talk. He cannot use eye tech devices due to the shape of his eye.

I don't know what to say to him to keep him engaged in the world. He cannot communicate at all, except by yes and know on a low tech board. He doesn't like low tech and is unwilling to use them most of the time.

I am afraid he is retreating into himself, since he has been unable to use his computer since Feb 2011.

I try to tell him things from my own life but I don't want to worry him and he has never been interested in the news.

I am not sure he can see the TV and his hearing is poor.

That is a hard one, I think sometimes, I try not to get too far down the road, how I will deal with this when it happens, I think that I will rejoice in the presence of my loved ones, just telling me what is going on in their lives, their experiences, dreams, ideas, secrets. Think of all the material you are giving him to create dreams as he sleeps. I am praying for you and your Father, and I hope my humble prayer will help ease the pain, all are feeling.

Maybe you can engage him in conversation more with one of these devices. You can set it up any way you want. You can ask him things and he can answer you just using his eyes.

http://www.speakbook.org/

Or he can ask you things or tell you what he needs as well.

Thank you for posting this. I don't know if asking him to blink for "yes" or "no" would help. I am sure that talking to him and hearing
about your life and your love for him is very important. Sometimes when I am with my friend we don't talk but just are happy to be with
each other. Sometimes I read to my friend or we watch movies or I show her photos. Sending
my thoughts.....Much Gratitude, Jayne

It's tough, but I think the suggestions above are pretty good if you can implement them. He needs to use the low-tech boards if he needs something as basic as an itch! Reading a book or magazine of something that he used to be interested in would be good as well (just not People Mag if he used to love woodworking). Can you get books on tape from the library as well? Or on his computer? Or music?

How does the shape of his eyes preclude him from using eyegaze?

Save up stories; good, bad, frustrating, to talk to him about when you get there...

Good luck and keep trying.

Try doing the range of motion exercises with him. You'd be surprised at what good the feeling of human contact can do.

Hello there and welcome to the site. I'm sorry about your dad. Each step of the way has its challenges. I found the stage of paralysis & no communication put more onus on me as caregiver to provide stimulus. I found this hard, firstly to come up with ideas but also because I was exhausted.

Enough about me. Here's some of the things we did. They may not suit your situation as everyone's interests are different but hopefully it will spark some ideas.
-movie night. One night a week with a movie of choice, lights dimmed, the whole as if we were out at the cinema. In latter times when there were more cognitive issues she enjoyed films or tv series she'd watched as a young woman.
-reading the newspaper to her, amazing how long it takes to read aloud!
-reading letters from friends
-reading murder mystery novels, I think the voice of a loved one can be reassuring to have around. I would run out of chat about myself quickly but I could read to her
-tv
-radio
-talking books/papers
-trips to our local pier (we were near the sea). I'd work her power chair & we'd go up to its highest speed so she could feel the wind in her hair
-holding her hand
-giving her space on her own
-range of motion exercises
-spa 'day' when I'd wash & cream her hands then do her nails
-putting moisturising cream on her legs. She loved the touch. Granted these things probably aren't guy stuff...but the power of touch...
-arranging short visits from friends who were willing to come
-hanging decorations above her bed at any excuse for a celebration
-decorating her wheelchair with balloons on my birthday. Simple but joyous
-telling her what was happening with my friends on her. She couldn't come online but liked to hear from time to time
-get out if we could. She observed everything even if she couldn't participate in the way she could before
-get to her bridge club where she enjoyed being with her gang
-let her be quiet and a bit withdrawn when she wanted to be. Everyone needs to come to terms with stuff in their own way

All sounds easy as I see it written down now but twas agony at the time yet bittersweet too.

Good luck

My husband isn't to this point, but believe me I have thought about your situation! I'm also a Special Education Teacher and have worked with physically handicapped.
Jellycat has great ideas!
* Massage. I do this now for my husband
* Lay Down With Him, Do Spoons, Hug... I do this also
Get very good headphones:
* Books on CD
* ipod music

* As Jellycat said, read outloud!
* Movies
* TV

* Record Your Voice and Talk sharing your love, current happenings, and anything that would interest him.

Get advice from ALS, social workers, Speech and Language Therapists!

God Bless!

Avril what you said about your mum watching old tv shows is weird, Bruce does that now, he watches ballgames, but other than that it is stuff like rifleman, dick van dyke, I guess this has to do with the cognitive issues.

Why can't he see the TV? Is his vision impaired, as well as his hearing? Goodness, I hope not!

I don't really know the reason for the old shows Joni. When mum could communicate she was aware of the changes in her head as she described them. She said it was like a confusion or a slowness to put things together. My hunch is that the old shows were familiar with characters and story lines she had once known. That and she liked to look at some of the dishy actors!

Bruce points at his head sometimes, and writes on the Ipad,messes with your head.

I think there's a familiar feel to the old shows, of a happier time, that they like about old tv shows... I know I'm totally hooked on the Andy Griffith Show, and love watching them on net flix as they are uncut and most I've never seen in full.

Great ideas folks, I'm going to file this page away in case I ever need to tell someone what to do for me!

Does your father have control of moving his head? If so, there is a device called a headmouse, which is a sort of camera that tracks certain features of your father's face or a reflector that can mounted on or near the face and moves the mouse pointer as the user moves his head.

There are also software applications that be operated by switches along with very sensitive switches that operate with tiny muscle movements. Your father's ALS clinic should have information of this type readily at hand.