Caregiving for ALS - The Daily Routine

追加: 2026-05-27

[00:00:00]Hey everybody, what's going on? It's your boy Dave. Uh, this video because of it being ALS awareness month, we're kind of doing a different video this week and give you guys an inside glimpse of our house and the daily routines. Um, but yeah, we're just going to dig right in.

[00:00:18]My wife, my lovely wife Natalie is with me today, so she's going to kind of give you the scoop. And I'm just the pretty face.

[00:00:28]>> Hey guys. Okay, so I'm gonna tell you about our day, like just what happens every day. Our morning routine starts. I I still work full-time, and I'm still David's primary caregiver, and we um still have two little bitty kids. So, every morning, Monday through Friday, I have to get up around 5:00 a.m. And I get myself ready. Um, I try to be ready by 5:30 a.m. Um, and then around 5:30 is when I start basically like working on my kids, getting them ready. Um, I get my daughter's lunch ready. I get their backpacks ready. I get um, their clothes together. Around 6 is ideally when I start to get David ready. And what that looks like is um, I start stretching his legs. So, I make sure sometimes he's still like sometimes he's on his side, sometimes he's on his back, but I do have to go in there and make sure he's like straight laying straight on his back um on the bed because I have to start I I do kind I guess like range of motion or just stretching of his legs um every morning. I started doing that a while back because he was getting sore and kind of stiff um and he was only going to physical therapy like two to three times a week. So it it wasn't really enough. Um so and it's stuff that I can do. I've asked the physical therapist like what kind of things I should be doing for him and they help me out with that. Um so I start with stretching his legs. Um getting that taken care of and then after that um I'll put on his socks. Um that's kind of a big deal. Um, I put in socks and then I'll um if there's sometimes he sleeps with his shirt off, sometimes not. Or um I do put his condom catheter on. Um I have to get that ready for him for the day. So I'll do socks, condom catheter.

[00:02:28]Um and then I do myself I lift him up from the bed. Um, so I'll like, you know, I have to lift him up to sitting position and then I do like rotate him around to where he's sitting on the edge of the bed. Um, and then, um, after that is really when I actually have to lift him up out of the bed because I'm going to transfer him to his chair. I don't really use a Hoyer lift to transfer him to his chair yet. Um because we do, you know, as long as he can still kind of stand with me and kind of scoot to his chair, we're going to keep doing that.

[00:03:09]One, it's kind of it it's quicker, I feel like, than the Hoel lift. Um but two, it kind of still keeps him still kind of moving a little bit. So, as long as we can do that, we're going to I'm honestly like I'm capable. I'm still like strong enough to do that. So, I once I get him up to sitting position, if he like didn't sleep with a shirt at that time, like I'll put a shirt on, but then um this is where then I'm going to transfer him to his chair. Uh so, I just and and our transfers right now really are like um we call them our little dances because of I mean, that's what it is. We're dancing from one spot to the other. So, um, get him up, put his arms around me, and then I lift him up from the bed, and he kind of scoots with, and this is important. This is why I put socks on him, especially because I try to remember, sometimes I forget, but I really try to remember to put socks on him before we do this, cuz that kind of helps him like scoot on our um our floor to his chair. So, that's important. Um, but yeah, we kind of scoot over and I sit him in his chair.

[00:04:19]Um, and then, you know, just get him all situated there. And then we'll I'll put his breathing machine back on. I forgot that I do have to take that off for a minute. Um, and then put it back on.

[00:04:31]Um, and then, you know, that's that's good. And then from there, I'll um give him water, wipe his face off, I'll give him his meds.

[00:04:44]Um, and then I do try my best to try to feed him something in the morning.

[00:04:51]Um, that was a morning routine. Okay. So, and then and then that's good. I get the kids, we leave, we go to school or I drop them off at their um schools and then I go to work. I try I'm I have to be at work right now at 7:30 and then I come home for lunch every day.

[00:05:14]Natalie.

[00:05:15]>> Hey, I'm here.

[00:05:18]>> Chick-fil-A.

[00:05:19]>> Chick-fil-A.

[00:05:20]>> And we eat Chick-fil-A almost every day.

[00:05:24]It's just it's easy, quick. Um, one of our preferred fast food places. Um, but I come out for lunch mainly to feed David. I will check his um bag to see if I need to, you know, pee bag, whatever you call it. Um empty that, feed him, and then if he does have to go to the toilet, I'll that's what we do. And that again, that transfer is another fun little dance that we do. Um it's I mean, I will be honest, the transfer to the toilet, it it makes me a little more nervous these days. Um, and we are looking into a different kind of lift system for that.

[00:06:11]But it the reason is because when I'm transferring from the chair to the toilet, there's a time period where he's pretty much standing on his own for a few seconds and that can be a little scary, but that's what we're doing right now. Um, so I do that at home and then if there's any anything else, um, sometimes his I give him his, um, injections of B12, which can do that, but um, uh, and then anything else he needs during lunchtime, I I try to help him with. Sometimes he needs his nose blown or um, >> scratch my head.

[00:06:52]>> Scratch his head. I help him wipe his nose or scratch his nose. Um, readjust his feet, just make him more comfortable again before I go back to work.

[00:07:03]>> Yeah. So, that's Natalie's side of it.

[00:07:05]My side. I just want to throw it in there what I'm doing. Um, it's always fun getting woke up, getting a condom catheter put on. That's always really exciting. Um, then the stretching, like she said, like I love it cuz it gets some blood flow, get some movement to my legs. I am getting better sleeping on my back cuz there for a minute I only sleep in one position having to wake up Natalie three or four times a night having her rotate me and roll me over.

[00:07:34]But I've I've learned in certain positions I can still kind of throw my leg over or move my hips. So that's always cool to stretching get in my chair. I'm not a morning person if ever anyone knows me. I hate waking up in the morning or wait another day. Thank God for another day.

[00:07:53]Um, but I'm not a morning person at all.

[00:07:56]So, getting up 6:00 is not in my MO.

[00:08:00]But, but then I have a good rotation of podcast Pat McAfee. It's probably unhealthy the amount of Pat McAfee that I watch.

[00:08:09]But, I'm I'm one of those rollers that just about three or four times a day, not a day, a week, I'm tuning in with him. It's probably five days a week, but I don't want to say it. That's where I get my chest in. You people, thank you for challenging me. Barbara, thank you for boosting my confidence and letting me uh smoke you in some chest. Um, but yeah, that's my it's a good window to where when Natalie comes cuz I have three or four hours by myself, unwind, decompress, take a nap if I want to. I actually am on a poop schedule now. So that's I feel pretty responsible for me who used to only poop once every three days. Now like I'm on a I'm like an actual an adult human being and I have a poop schedule. Pretty cool. Uh she fig me we do the transfer thing and then it's I get another little all right watch some more podcast and get caught up on TV look out the window and watch birds. So, what he's saying is he needs more visitors during the day.

[00:09:14]>> Yeah. Where's my other friends who are retired? And uh where's the 34 year olds who are retired and have time to come see me? No, but I'm very grateful for what does and we just want to kind of give a glimpse, give a shout out to the caregivers.

[00:09:27]>> This month is not only for ALS patients, but for caregivers. We kind of want to recognize them, too. And I know they have their own month to be recognized, but I just like giving shout outs to the caregivers and how vital vital they are to our caregiver team.

[00:09:44]Shout out to Natalie. Love you guys.

[00:09:46]Thank you for watching, giving me my five minutes of fame. I still tell people and tell my kids I'm a YouTuber, so we do get paid for this. You watch that whole video. Quit clicking out at a minute 20. You watch this whole dang video, okay? Love you guys.