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GB glad to hear you are feeling a bit better each day, and are up in your chair!

You should stay there as long as it takes to have all your care needs at home sorted, both for your sake and for wifey.
 
I am the sole caregiver for my husband, who has been trached and on Trilogy ventilator since the end of December. He prefers that I do all his care, and it has been doable. We have no other obligations, so I am not torn by thinking I should be somewhere else. We do have one married son locally with 2 little kids and a full time job. He has also taken over managing some apartment rentals we have. He and his wife are more than willing to learn the necessary care, but so far Gary is resistant to that idea. Our wonderful daughter in law does shopping, banking, and whatever other errands we might need.

HOWEVER, I do know that this routine is not sustainable, and sooner or later I will need to get out! I have been looking for some paid help, but don't want to go through an agency because they are so restricted on what a pca can do. I still wouldn't be able to leave the house. Until we do find the right person to come by a couple of afternoons a week, we live a quiet, uncomplicated life, with visits from the grandkids the highlight of our days. My ultimate goal is to keep Gary out of the hospital. A month of being in three different facilities was so much harder than being at home with me as the only caregiver!

Good luck, Graybeard. It does get better. Are you taking anything for anxiety? That could be the source of your high blood pressure; learning to trust that a machine is going to sustain your life takes a bit of getting used to. Gary was the most laid back, non anxious person I have ever known until getting put on the ventilator. A little clonazepam really made it easier for him to relax.
 
Diane how many people do you need to take care of you? What about power outages? If you don't mind my asking, do you still have some movement left?

There is a gap between how many people I have to take care of me and how many I should have! My husband was offered an early retirement package at about the time it was getting unsafe for me to be alone. He is pretty much my only caregiver but a friend comes on Fridays for 4 to 5 hours so he can have scheduled time off. After 4 pm we have a neighbor who usually is available to come over if I need suctioning while John is gone. He will leave his beeper with her or I can call her using Skype but don't have to be able to talk if I am too congested -- a silent call tells her it is me! The beeper is part of a paging system and has about a mile range so it is great for allowing John to go outside, visit neighbors, and even go to the local park to fly his radio control airplanes. The main limitation of it is that he has to remember to take it and turn it on! But as long as I am out of bed I am always at my computer and call his cell phone. The pager is great if I am still in bed, but I don't feel safe if he leaves the house then. Unfortunately with cell phones now, paging systems are no longer being made. Apparently iphones can be used with an easy to press switch for those who can't hold the phone or press buttons. But I am off topic. One of our daughters lives here in town and can take off from work if we need her. So John can get away fairly easily but if he were sick or hurt, would have to find a home health agency with vent trained nurse$.

Our biggest problem is the usual one for caregivers: Sleep! I need to be suctioned about three times a night ( more frequently than during the day!) He has never been a good sleeper so between me and his own sleep problems, he is always tired.

We have a small generator that we can use to keep my vent batteries charged in a long outage. We keep talking about getting a better surge protector for the computer that has a fifteen minute battery backup so I can Skype him if the power goes out while he is out. My vent can run off the wheelchair battery which is good for over 6 hours so that is another option on top of the 30 to 45 minutes on the internal battery on the vent which will automatically kick in if all else fails.

I am still able to move my head but it falls forward unless supported with a little wheelchair tilt to keep it on the headrest. I have some wrist and finger movement in my left hand so by taping my fingers to the mouse, using a handy dandy do-it-yourself elbow roller skate, software to increase the distance the cursor moves in response to mouse movement (now also available by using a gamers mouse with CPI adjustments) Click-N-Type, Dasher and sometimes Point-N-Click, I am able to do everything on the computer. I can clench other muscles a little but can't move anything else. I can still talk, chew, and swallow but the swallowing is getting worse these days. The question is what will my quality of life be without CHOCOLATE?
 
> but don't have to be able to talk if I am too congested

? You're on a vent but you can talk!? I admit to ignorance, but I thought the trach put an end to speech...
 
This may need to be a new post entitled "How can I do that" but it starts from comments here.

As many of you know my ALS presented with breathing problems. My doctor has suggested that there are things they can do to help with it (he is not a "fan" of DPS) so I assume after BiPAP he means vent. In reading this I am not sure how I can ask my wife to spend all of her time taking care of me. I did not know that it required so much work and we do not have the funds for extra help.

So, in a way, this may help with my decision.
 
Thank you for this information. I don't and won't have the resources to take care of me if I was vented. Wish I did, but that's the way it is.
 
I'm afraid that yes, on a vent it is 24/7 care. Yes with a portable beeper you can leave the room, but if the vent fails or disconnects then it is an emergency situation requiring rapid response.

In Australia it is not even offered as an option.
 
? You're on a vent but you can talk!? I admit to ignorance, but I thought the trach put an end to speech...

Gary can still swallow and is not at risk for aspirating, so his trach cuff is not inflated and he can still talk. His speech has been affected a little by the ALS, and he has to coordinate talking with the respirator, but hey, it works for him! Conversation does not "flow" like normal, and it does tire him. The vent settings are adjusted to accommodate the leak.

We have a audio/video baby monitor that goes around with me so I am aware at all times of any incidents that may come up. Hasn't yet...
 
If you can talk with the cuff open, you will find that adding about 5 of PEEP (Positive End Expiratory Pressure) to your ventilator by adding a PEEP valve to the tubing will give you the reserve air volume to speak more smoothly rather than saying one or two words with each breath. For some reason, adding to the PEEP settings on the vent itself doesn't seem to work. An external PEEP valve inline on the hose does.
 
I definitely would not go through this anyplace but VA. They are great. Will be here another four weeks or so. Couple of hours in PWC each day now.

House needs major mods, which paperwork is done. Getting bids for room over new garage. Designer lagging wasted months.

Had no idea what a change this was. DPS better choice if available.
 
Graybeard, I asked this above but it probably got overlooked...

What does the VA kick in for homecare; don't they send folks over a few times a week?
 
I'm afraid that yes, on a vent it is 24/7 care. Yes with a portable beeper you can leave the room, but if the vent fails or disconnects then it is an emergency situation requiring rapid response.

In Australia it is not even offered as an option.

Tillie

We have a baby monitor we use. I still go outside and to the neighbors for limited time periods. The Trilogy 100 has about 8 hours of battery life (and it DOES last 8 hours as we found out on a long ER visit where I forgot to bring the cord). Our insurance provided 2 Trilogy vents, so we can go 16 hours if need be. We also bought a generator and have had to use it numerous times this past winter. As for vent failure, that has never happened; but if it does, there is always the Ambu-Bag!
 
Thanks for all the good comments. not much new to report, except that weekend care is minimal, even here. Wishing for a bedside treadmill.
 
... In reading this I am not sure how I can ask my wife to spend all of her time taking care of me....

She may insist on caring for you. I did.

Once my PALS was bed ridden, it was 24-hour care. Gotta keep moving the limbs, otherwise they hurt. Gotta keep massaging the legs and doing ROM "exercises" to avoid pain. Feeding and bathing and toileting take a very long time to accomplish.

Most of all, however, I wanted to assure my loved one that I was always there, and she was never alone. I couldn't bring myself to take a respite break.

I served on 5 ships at sea and been on numerous military field exercises, but being a CALS was the most tiring job I ever had. I took naps at traffic lights.

Your mileage may vary.
 
GB, there are portable pedal exercisers usable by arms or legs wherever you are--the usual cautions regarding overdoing it apply, of course. How goes it?
 
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