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HeatherFeather

Distinguished member
Joined
Nov 30, 2014
Messages
284
Reason
CALS
Diagnosis
10/2014
Country
CA
State
Quebec
City
Tiny town w/no stoplight!
Hi to all...

It's been awhile since I've been back on this forum. Ron has deteriorated so very very fast and I don't think he has much time left - maybe a month or so - his neurologist agrees :cry:

We have a HUGE problem now. Ron has no movement in his hands or legs (or head). He wears the BiPap at night (full mask) and cannot call out to me to adjust it or his feet, or give him water or whatever so we had an alarm sensor where he could move his hand very slightly to set it off. I clipped it to one of his arm/hand supports that he uses to keep his fingers from curling. And then he used his other arm, which is also in a support, to just slightly move it to set off the alarm. Now it takes about half an hour to set it up and it barely works as his movement is next to nil. What can we use to let me know he needs me - any ideas out there? I'm at my wits end trying to find something online!

Thanks all and have a beautiful day xoxoxo
 
I don't think there is an alarm that doesn't require a movement to actuate it. Do you have Hospice involved with Ron's deteriorating condition.
At this point maybe you should consult them for a way to monitor him. Perhaps Hospice should start him on morphine to make him comfortable.
My thoughts are with you and Ron, sorry things are so bad for you.
 
My first thought is that the hand supports are far less important than the ability to call for help. Unless the curled fingers are painful, they aren't going to make him any less disabled than if they were straight! If his nails dig into his palms just roll up a washcloth and put it in his hand. That may leave him the movement he needs to use the call button. The very presence of something against his fingers may trigger the spasticity that makes them clench. In that case the treatment is not to force the hand open but to reduce the spasticity with Baclofen.

Anyway... Does he have any movement anywhere? There are buttons (" capability switches") available at enablingdevices.com that respond to very light pressure and can be placed against any part of the body. They also have a "Twitch Switch" that detects any slight twitch of the forehead, or else where. Even with his hands in splints there might be enough movement available on a finger or hand to trigger it. These switches can be plugged into an adapted (soldered) doorbell chime set up. Surprisingly and disappointingly Enabling Devices doesn't have the whole set up for sale so it is a do it yourself project. My husband knows how to do it and would be able to adapt a doorbell for you for the cost of the doorbell and wiring and shipping to you. The big expense is the capability switch which you would order online yourself.
 
Heather, so sorry that Ron declined so quickly, are you able to get someone to sit with him thru the night to help you with his care, that way you can still get some sleep and peace of mind knowing he is been looked after.
Love and hugs
Gem
 
That is so hard, it was like that with Chris except he didn't have bipap. They do need some movement to use any kind of call system. Is the problem that he needs to call you regularly through the night? How important/urgent are his needs at night? I'm wondering if you can use an alarm for yourself to check on him through the night regularly. It will mean your sleep is always disturbed. Can you set up a temporary bed in the room Ron is in so that you can pretty much check and fall back to sleep?

If he is getting towards the end, are you giving him anything like morphine? He may sleep better through the night at least for one stretch which would give you better sleep?

So sorry it has gone downhill so fast, I did wonder how things were as you were so quiet.

Tillie xx
 
Aw, Tillie, Gem, Diane, Nikki and Mark - my buddies - I missed all you guys MMMWWAAHHH!

It's been so so hectic here. Ron has been deteriorating so fast. Thought we lost him yesterday - he just wouldn't wake up fully. He was even in the sling, ready to be put into his popup chair but he kept falling asleep. We asked him if he wanted us to take the sling off, but he said, "No just leave me here and let me sleep" We were sitting in the room watching him and wondering if this was the time. He finally woke up fully around 1:30 in the afternoon and asked for a cheese omelet - LOL!

He's been on morphine for about a month now and the docs have been increasing it. I thought his grogginess was from the morphine but his neuro figures it's from CO2 and that he needs the bipap also during the day to take care of the CO2 buildup.

yesterday, I was so pooped and frustrated, and crying all the time that the nurse from our local community service found me someone to stay with Ron for the next 3 nights. Last night was the first. I was too pooped to set up my cot in another room so I just slept on the couch in the livingroom. Didn't sleep well, kept waking up and checking the time. had lots of weird dreams. I slept on and off from about 12:15 to about 5:30 - so guess I'll need an afternoon nap but friends are coming over to celebrate my birthday so today's not an option (May 5th - on Cinco de Mayo - my 62nd birthday - wheeeee! Why don't y'all come on over and celebrate with me? Or howz about a toast on the 5th ;-) Hopefully I'll have a better nights' sleep tonight and tomorrow night while the 'baby - 'er Ronnie sitter is here!

So about the alarm. The only movement he has is his eyebrows and his cheeks and mouth but with the full face bipap mask, prob. the eyebrows would work. Need an alarm for two things. One to call me while I'm sleeping (I'm in a cot in the same room), and the other for when I'm around the house with the baby monitor in my pocket.

Nikki and Diane, I will check those links - thanks!

Have a beautiful day - huggs xoxoxo
 
>Why don't y'all come on over and celebrate with me? Or howz about a toast on the 5th

for sure -- thinking of you ...
 
I am so glad you have some night help for 3 nights!

Will you be able to get that again? Try to use the second two nights to the best advantage!

I hope you can get some kind of switch to work. We simply had nothing when Chris reached that stage - I used a baby monitor and he could moan a kind of noise but that was it. So he was dependent on me hearing small noises and checking on him frequently for the last 2 - 3 months.
 
I am sorry that Ron is not doing well. We, too, have needed an alarm of sort. We bought a switch that had two sensors. They were supposed to pick up very slight movements of the eyebrows, etc. It did not work at all. It has to have a movement big enough to move the wire or have some pressure on the sensor. My PALS cannot move her feet but she can sometimes make a muscle in her foot move a little. We attached the sensors between her toes and sometimes she can make the alarm buzz. However, the sensors are very poorly made and we have had to re solder the wires several times. I am sorry I can't give you a positive suggestion but I wanted to let you know that sometimes the advertising for the sensors say they can pick up a small movement when they really can't. I think we spent around $400 and I can't really say I'm happy with the purchase.
 
oh Heather, sorry to hear that Ron has progressed so fast. so unfair and disheartening. I find that I am so hypersensitive to every noise that my hubby makes that I have no problem so I don't have an alarm suggestion. But is there anyway you have some friends or relatives or could you hire someone to sit up with him at night? Perhaps they could each take a night so he
is never alone and you could get some rest?
 
Heather can he move his head at all? There are micro switches that can be placed so that the slightest motion will set off an alarm. Our occupational therapist is the one that contacts someone to come in and set up alarms. Our problem is that Tim has a bed that automatically turns him, so the movement sets off the alarm. For a while I made a special foam splint that his hand sat in with the microswitch embedded in it just under his middle finger, which he could move ever so slightly. But we took it off, because when he was dreaming he would at times set it off. I am a very light sleeper, and he is still able to vocalize so I hear him immediately.
 
Heather,
I'm sorry to hear that Ron's not doing well.

Not sure what kind of baby monitor you have -- we had the Motorola kind where any sound Larry made even on BiPAP would make the indicator lights change color just because of the slight difference in volume. Not sure how much vocalization Ron is doing...it had video as well so we could see.

Also we sometimes used a Webcam app on a laptop that faced his bed (there are also iPad apps that do the same thing), so I could monitor him while I worked on another computer. And you can pick up audio that way, too. If you are walking around the house a lot, if you have an iPhone, you could put the same app on that and prop the phone wherever you are.

We didn't have any luck w/ switches, either. We basically just tried to set Larry up really well at night so he wouldn't need too many adjustments. And he always had music or an audiobook to fall asleep to that we left on for extra time; it seemed to help. Admittedly, he could still talk but it was hard for him when he was sleepy, so we tried to be proactive with the video/audio monitoring and of course checking on him just as you do. But fragmented sleep does no one any good so we spent a lot of time getting him comfortable. What kinds of adjustments does he need once he's in bed?
 
I am so glad you have some night help for 3 nights!

Will you be able to get that again? Try to use the second two nights to the best advantage!

I hope you can get some kind of switch to work. We simply had nothing when Chris reached that stage - I used a baby monitor and he could moan a kind of noise but that was it. So he was dependent on me hearing small noises and checking on him frequently for the last 2 - 3 months.

Tillie

Hey Tillie,

Well our care person left at 6 instead of 7 - he was tired and he won't be back tonight - waaaaaa! But at least, last night, I had a better sleep. Ron really likes this guy - he's so strong and can do wonders.

Ron moans very lightly and I wouldn't be able to hear him with the fan on max and the hum from the BiPap :(

~ Heather ~
 
I am sorry that Ron is not doing well. We, too, have needed an alarm of sort. We bought a switch that had two sensors. They were supposed to pick up very slight movements of the eyebrows, etc. It did not work at all. It has to have a movement big enough to move the wire or have some pressure on the sensor. My PALS cannot move her feet but she can sometimes make a muscle in her foot move a little. We attached the sensors between her toes and sometimes she can make the alarm buzz. However, the sensors are very poorly made and we have had to re solder the wires several times. I am sorry I can't give you a positive suggestion but I wanted to let you know that sometimes the advertising for the sensors say they can pick up a small movement when they really can't. I think we spent around $400 and I can't really say I'm happy with the purchase.

Oh, I'm sad to hear that about the eyebrow sensor - I really was thinking of ordering one - booooo....
 
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