Overwhelmed

lgg

New member
Joined
Mar 19, 2020
Messages
6
Reason
CALS
Diagnosis
11/2017
Country
US
State
TX
City
San Antonio
My PALS was diagnosed in November 2017. Fortunately, it progressed slowly, allowing me to gradually increase my level of care as needed. Use of his arms and hands were the first to go. While his legs were strong, his balance was not good. In February he fell for the last time because he would no longer try to walk. Since then the progression has sped up and I find myself ill prepared. His lung capacity has gone to 30%. We just got a ventilator, which has been helpful, but I worry. When he uses it at night, I worry he’ll need me and I won’t hear him. Because he can’t move his arms, he is unable to remove the mask if something goes wrong. I’m in the process of hiring someone to come in three nights a week primarily so I can sleep. I’m exhausted. Any advise or ideas would be welcomed. Thanks for listening. I’m awfully glad you’re here. Leslie
 

Jimi

Distinguished member
Joined
Sep 24, 2019
Messages
114
Reason
PALS
Diagnosis
02/2015
Country
US
State
CA
City
Torrance
Hi Leslie,
Sorry for your difficulties. Most ventilators/bipap machines have alarms that can be set so that if there is a problem they sound off. I have also made an alarm that I can trigger from my computer that I made from a smart plug and an electronic siren. $30-40 in Amazon parts and 30 minutes to wire up. I have also rigged up a backup bipap air system with a mouth piece that we can put in place so I can be left alone for short periods and still get air if my mask/machine fails. If you need assistance I can have my caregiver talk about with you or I can try to give more details. I attached my write up of some of the things I have done to help give myself some slight independence. I'm 100% dependent on non-invasive ventilation for over 2 years. I've managed to not bother my caregiver for 8-9 hours per night, about 99% of the time. It takes some experimentation to find what works, but it is worth it. You need to sleep! All the best, Jim
 

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lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,462
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Leslie, you can set a baby monitor so an alarm or his voice would wake you up. Also, if the vent is set properly, it should not be so noisy that you would not hear him in the same room or amplified. The motors are pretty reliable unless the machine is ancient but as Jimi says, you can set the power alarm (which is probably on by default). The rest of the alarms are generally not needed if you have a backup rate set.

Just a reminder for all -- make sure you change all machine filters this time of year, rinse the hoses, and clean the mask so you have a good seal. Those help ensure that the machine functions as advertised.

Is he not sleeping through? That would be my point of attack -- why not -- if not.

As backup for the monitor, if he has any reliable muscle movement, a switch-operated chime can also be mounted or taped so he can operate it. But just as parents wake up, CALS generally find they wake up if their PALS are in need.

Best,
Laurie
 

lgg

New member
Joined
Mar 19, 2020
Messages
6
Reason
CALS
Diagnosis
11/2017
Country
US
State
TX
City
San Antonio
Thank you, Jim. This is good information.
 

lgg

New member
Joined
Mar 19, 2020
Messages
6
Reason
CALS
Diagnosis
11/2017
Country
US
State
TX
City
San Antonio
Laurie, you’re right, I do wake up when needed. Good to know. When his mask is on I can’t understand him. Tonight, for instance, he was cold and wanted more covers. Sometimes his mask slips. We are getting some sort of caregiver alarm that can attach to his ankle. I’m hopeful. Thank you for your response.
 

sweetmozart

Active member
Joined
Feb 22, 2008
Messages
61
Reason
CALS
Diagnosis
05/2001
Country
US
State
MA
City
Greater Boston Area
My husband bought cheap ($15-20.00) wireless doorbells from amazon. We have three of them strategically placed where he needs them, one under his computer desk, one in the bathroom and I put one near his feet, under his covers in bed whenever he is sleeping and I am up. Of course, he has one built into his wheelchair, so he is covered pretty much anywhere :)

The call buttons are big, so they can be pushed easily with toes. The ringing part is plugged into an electrical outlet wherever you need it to be. The volume can be adjusted to be loud, if need be. This alleviates his anxiety about me being unable to hear his calls.
 

lgg

New member
Joined
Mar 19, 2020
Messages
6
Reason
CALS
Diagnosis
11/2017
Country
US
State
TX
City
San Antonio
Great idea. So simple. Thanks.
 

Jhettinger

Forum Supporter
Distinguished member
Joined
Sep 22, 2016
Messages
115
Reason
PALS
Diagnosis
4/2016
Country
US
State
GA
City
Roswell
read your pdf 5 times especially chair wiring

thanks for your efforts and post
 
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