Caregiving for five years

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JonK

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CALS
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US
State
Kentucky
City
Louisville
My wife was diagnosed with ALS in 2012 at 30. Her disease has progressed to where she is fully paralyzed and dependent on a ventilator. Adding to her troubles, her eyes have slowed down to where she cannot use her eye gaze device (she used to be a regular contributor to these forums). Because of the communication problems, caring for her can become frustrating for both of us. We use a yes/no system where she moves her eyes to the right or left, but even that is slowly breaking down.

It feels like I'm losing her even though she's still here. Do any other caregivers have advice for dealing with this kind of pain?
 
Hi, Jon, very sorry to hear of your wife's progression. She might be a candidate for a BCI (brain/computer interface) trial. Case Western would be the closest site to you through I'm not sure you are within 3h of Cleveland as required. There are other related projects and you might want to do some Googling if you guys are interested. Is she using the Eyegaze Edge?

Not knowing what if any muscles she can still twitch voluntarily (e.g. cheek or a blink), which could bring switch control into the picture, or whether she could use a different eye gaze interface (there are some experimental ones), I would venture to ask what her wishes have been/are now relative to quality vs. quantity of life. Some PALS consider that a legitimate tradeoff and others do not.

I am not skirting your question, but I did not face what you are now. Those who have faced it/are living it, will chime in to share with you.

Best,
Laurie
 
Laurie,

Thank you for your response. She currently has a Tobii EyeMobile device that is attached to a Microsoft Surface Pro. Unfortunately she cannot get the device to calibrate well enough to use it. Her eyes don't seem to be capable of the precise movements necessary.

Would Eyegaze edge offer any advantage?

We are looking into a switch, but she really doesn't have the voluntary movement needed, I fear.

Jon
 
Jon, I am not the best person to respond to your question as I find it very difficult to express my emotions, especially in writing. But please know that I feel your pain and have thought about you all day. My husband and PALS is not far behind what you describe and is also on a ventilator. I have never felt pain like this before and don't know how to deal with it. I guess each of us has to find our way through it in our own way. The good part of coming on this forum is that you can know that the people here will understand. Kate
 
Jon, i too understand your grief. My husband has been on a vent for 7 years, diagnosed for 10 and started with symptoms 12.5 years ago. He too is bed bound with eye gaze troubles. He is able to use a switch. But other than that no movement. It is the hardest thing I've ever gone through.

I try to remember good times and I try to make jokes about what we face day to day to keep it light. I also focus on the positive as much as possible. I also suppose I probably do a lot of comparmentalizing to just shut off the pain. I kind of store it in a box and not let it out, if that makes sense. It's the only way I can stay sane.

Hugs to you,

Sue
 
Hi Jon. I am sorry for all that you are going thru. While my PALS & I are not yet at the junction in the ALS progression that you are experiencing, I just want you to know that the collective "we" are here for you and will try to answer any questions you have. If we can't provide a meaningful/helpful answer, we will at the minimum listen to you and commiserate with you.

Laurie asked you a pointed question, which you may not feel comfortable with answering, or may otherwise feel disinclined to answer (at least here on the forum), but I am hoping that you know what your wife's wishes are as far as when she has had enough. I know that this is a very, very personal & difficult topic. But there is a big difference in deciding to not allow medical technology to prolong life vs. "suicide". They are not the same. I am not asking you for a reply. That is very personal and private matter. I wish you strength. I hope you have someone strong and perhaps "spiritual" that you can talk to.

Love and hugs to you Jon.
 
Thank you everyone for your kind words. It is seriously a relief just to have evidence that I'm not the only one.
 
Jon hi and welcome.

My husband was rapid progression bulbar onset. I am in Australia and we have no option to vent here. He was gone 11 months after diagnosis.

So, my background is just to let you know I have not been where you are, but I am glad you have joined as we will all support you. My husband also had FTD, so truly rapid progression was a blessing because the person he was disappeared rapidly also as the cognitive/behavioural progression took him even faster.

Advice in dealing with the pain? This place is probably going to save your sanity - it certainly got me through xxx
 
Jon - I wanted to reply to something you said on my Struggling thread, but i wanted to make sure you saw it.

I'm wondering if you have a letter board? You can also make or get others as well. Possibly ALSA might have something download able or you can use clip art. Basically pictures of needs, YES/No. You can point and your wife can confirm. Not always the fastest method, but does work. You can have pictures of someone drinking if she's thirsty, while she may get water through a tube, she can still feel thirst. Word, Turn Right, turn left. Things she usually asks for or needs, pain etc. You can point to the words and then she can do as much as she can to confirm that's correct like a blink or even slight squint or subtle eye movement.

One thing we do if Brian doesn't have his computer in front is I ask broad questions and then narrow such as "is it your body?" if he confirms, then i start at his head an work my way down like this head, eyes, ears, nose, mouth (usually means his mouth needs suctioned), neck, trach (suction) or (move), shoulders, arms, hands, back, belly, butt, legs, feet. If he says not to the original question, i'll ask if is about the bed, then go over in similar fashion everything connected to the bed. It can get frustrating, but narrows it pretty well. If those don't work, then I pull out the letter board and have him spell it out to me. Generally I can get it with in the first few letters as you get to know their requests.

I hope this helps.

Hugs,

Sue
 
Good point Sue - we used an alphabet chart, word charts and picture charts. I made them all and we had different word charts for different situations/needs.

My Chris never used technology as with FTD he couldn't concentrate to learn any and he had no speech.
 
Thank you both. We had used a speakbook for years, but she cannot use it well anymore. She either never lands on a letter or spells a word that doesn't make any sense. I'm not sure what the problem is exactly.

I will try to create some aids with fewer options and see how that goes. Thanks again.
 
Jon - Tillie would know about this better, but it could be cognitive decline either from FTD or just general that is causing her to have trouble spelling. OR maybe a new med? When they had Brian on Oxy for a bit when he had issues back in April, he could not spell either, just gibberish. Once we got him back off of it, he got back to a normal space.

However, if its not a med, then maybe go for pictures as much as possible, she may be able to identify them easier than even the written word. Just a thought.

Hugs,

Sue
 
Jon,
The Edge is considered more responsive to impaired eye movement in some cases. Perhaps you can arrange a demo through the mfr or your local/state technology access program. Every State has one.
 
Jon I used to talk Chris through our charts, rather than him use them. We had head pointer and switch but he couldn't cope with learning anything new.


What I did find is that response time can be a problem - I had to go very slowly with the charts as there was a gap between Chris thinking yes and physically responding. So if I went a little fast he was responding yes to the next letter or word.

Walking him through the charts became extra difficult when he reached a point of mixing up yes and no. He found communication exhausting and extremely frustrating in the last months. It took enormous patience for me because if I showed any sign of fatigue or frustration he would immediately refuse to attempt to engage at all no matter what he needed.
 
Tillie,

Yes, not showing frustration is quite a challenge. I am trying to slow down my expectations when we interact. She seems to appreciate the effort we are taking so far to be more explicit.

Jon
 
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