AfraidButNotAlone
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How do you get your CALS' attention at night as your speech is failing?
night time
- Thread starter AfraidButNotAlone
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AfraidButNotAlone
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Thanks a bunch! 
Santa joe
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Joe had a bell when he could still move his hands. Then we went to jingle bells velcroed around his wrist. After he couldn't do anything, I was up checking on him all during the night.
Debbie
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I am using a wireless doorbell that I got on ebay for about $11 shipped. It has 2 receivers so we put one in wife's room and one in my sons room. I stuck the switch to the side of my bed. It is loud so when I press the button someone always comes running downstairs. Super simple and very effective
Barbie
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we sleep in the same bed, and I am hyper alert to his calling. even though his voice is weak and mumbled.
he like to say my name over and over again and I just respond, I guess it was all my training as a mommy. is you wife in your room? has she any problems responding?
he like to say my name over and over again and I just respond, I guess it was all my training as a mommy. is you wife in your room? has she any problems responding?
AfraidButNotAlone
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I have a hospital bed now. It is in the bedroom with my wife. I am having trouble adjusting to it. I'm claustrophobic and the progressing paralysis is playing havoc with me emotionally.
I also feel guilty asking her every 2 hours or so to get water in my mouth, to adjust my positinn, etc.
I am PETRIFIED that I won't be able to wake her and I'll be stuck. I had to get out of the bed at 6am and that was a huge process.
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We have the hospital bed for my wife in the same room as my queen bed. She cannot move legs, arms or torso... so any movement (other than head/feet changed by the controller) I have to do. I have positioned her bed perpendicular to my bed so I can look to my right and see her from foot to head. It also allows her to see me and note if I'm awake or not. Since getting an 8" alternating pressure air mattress from our local ALS Loaner Closet, she no longer has to turn every hour or two. Instead, she often sleeps the entire night away in the same position (on her back) as she started the night in. Sleep is a wondrous thing...
Jim
Jim
MaxEidswick
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>I have a hospital bed now. It is in the bedroom with my wife. I am having trouble adjusting to it. I'm claustrophobic and the progressing paralysis is playing havoc with me emotionally.
are you getting an anti-anxiety drug? It can help ... at least me
are you getting an anti-anxiety drug? It can help ... at least me
affected
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We also used a doorbell, I got it from Bunnings for about $10 and it had a 100 m range, so I could also take it outside with me to do gardening and stuff.
I had a baby monitor too so that I had been chance of hearing him at night rather than being woken by a doorbell.
Do you have an alternating mattress Rob, they really are amazing for the amount of comfort they give.
Also once Chris started on endep he actually began to sleep long stretches at night, for the first time in 18 months!
I had a baby monitor too so that I had been chance of hearing him at night rather than being woken by a doorbell.
Do you have an alternating mattress Rob, they really are amazing for the amount of comfort they give.
Also once Chris started on endep he actually began to sleep long stretches at night, for the first time in 18 months!
Barbie
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the bell is a good option if you can move your hands, even if you are in the same room. also a baby monitor with the speaker close to your head and the monitor close to hers.
That is sweet of you not wanting to wake her up all the time, but it is what it is for us cals.
That is sweet of you not wanting to wake her up all the time, but it is what it is for us cals.
affected
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We did have to use the doorbell a bit inventively after he couldn't press the button with his finger anymore, then had to abandon it, but it was great for some time.
I believe there are call buttons you can get for home, probably more than $10 however
I believe there are call buttons you can get for home, probably more than $10 however
AfraidButNotAlone
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30mg of paxil. Works for general depression. Fear of being trapped, not so much.
AfraidButNotAlone
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Tell me more about endep.....please
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Hi Rob,
Endep is another anti depressant. The doctor only got Chris to accept it because he said it may help him sleep as well, and it did, such a relief.
It could be worth talking to your doc about changing over, but they do take a while to wean off and get a new one into your system and working.
What could really help Rob is clonazepam - this is an anti anxiety, it can be given as drops. Just a couple of drops into the mouth, absorbed through the mucous membranes so it works fast. So easy to give a tiny dose like 1 drop wait 5 or 10 mins, then if not enough give another drop or 2. Compared to taking a tablet and thinking half an hour later, I don't feel any better...
Hope that helps.
Endep is another anti depressant. The doctor only got Chris to accept it because he said it may help him sleep as well, and it did, such a relief.
It could be worth talking to your doc about changing over, but they do take a while to wean off and get a new one into your system and working.
What could really help Rob is clonazepam - this is an anti anxiety, it can be given as drops. Just a couple of drops into the mouth, absorbed through the mucous membranes so it works fast. So easy to give a tiny dose like 1 drop wait 5 or 10 mins, then if not enough give another drop or 2. Compared to taking a tablet and thinking half an hour later, I don't feel any better...
Hope that helps.
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