Caregiving tips and mobility questions

[lgelb]

Bowel problems usually include constipation at some stage, but the opposite as well. That can relate to the combination of diet (including tube feeds) and which muscles are overly weak. Various combinations of dietary changes, fiber, and/or laxatives may help.

A "regular" power hospital bed will be covered at the same rate as other DME, including suction machines. His doc can write an order for these and other equipment needs. For the bed, if you can pay the difference, a reverse Trendelenburg feature "cardiac chair" is advised, as it helps with urinal use to have the whole bed tilted down. If the PALS is taller than 6 ft. or so, an 84" bed may work better.

Search on Radicava up top and you can read threads about it. Insurance does not always cover it. It does not benefit all PALS.

Overnight caregiver tasks usually include repositioning for comfort, including the use of foam supports for joints, adjusting bedding or room temperature, adjusting the BiPAP, toileting when needed. But once a PALS needs BiPAP and cannot adjust it themselves, or is at risk for choking on mucus and/or saliva, it is a matter of safety for a caregiver to be with them, whatever the time of day.

 

[JimInVA]

Our ALS group (ALSinfo dot org) helped out in a number of ways. They had introduced themselves to us by sending out our contact person, Jeri. She came to the house and looked around and asked if there was anything she could help us with at that moment. At first, we felt well attended to. We had a PWC, a hoyer lift, a Trilogy BiPAP, a CoughAssist and a Saliva/Mucous suction machine. Darcey had lost most all mobility in bed and we'd just gotten her an electric hospital bed.

As Darcey's in bed mobility decreased, she wasn't able to turn in bed on her own. So every 60 to 90 minutes, she'd wake me to move her. As days began to stretch into multiple weeks, I was becoming more and more exhausted due to the lack of uninterrupted sleep. So I mentioned it to Jeri who said, "I've got a solution for you. Let me see what I can find in the loaner closet." A few days later, they delivered an 8" low pressure alternating air mattress to go on the bed (replacing the existing thin mattress). From that very first night, Darcey slept through the night without waking and needing to be turned from one side to another. Obviously, I was able to once again sleep, too. I can't even begin to describe how important it is for both parties to get good sleep.

Later, they helped with some issues we had with condensation happening at night in her BiPAP hoses. When fulltime use of a hoyer was necessary, they loaned us a new hoyer lift for upstairs (we used a stair lift for several years to get to our upstairs bedroom) to make my life easier. And as Darcey's voice began to wane, they worked with a technology company to get us an Eyegaze device, ON LOAN, so that Darcey could continue to use the computer and keep herself occupied each day.

And when Darcey was no longer able to call me in the middle of the night (she could not talk anymore with her full face mask on), explaining my dilemma to Jeri resulted in hearing from a special technology expert who provided an infrared system that would detect movement of her eyebrow... sounding an alarm that would bring me running from upstairs to downstairs where she than slept each night.

For us, these were all major helps and everything was provided at no cost to us. Their only request was that we let them know if we were experiencing any difficulties, no matter how small, as they loved nothing more than to provide solutions that made a difficult situation much, much better.

I hope you have access to as good of a group as we did. Neither Darcey or myself would have had so many good days for nearly 8 years had it not been for their aid.

My best...

Jim

 

[Adviceseeker1]

Thank you again for sharing all this info.

Very emotionally and physically tired right now and haven't had time to post on here.

My family has had a rough past few weeks. My dad had to go to the ER. He told me to call 911 because he couldn't breathe and passed out but thankfully the EMT got him some oxygen and he woke up again. He also told me that he had a bowel movement that allowed him to breathe again. I suspect that his stomach bloating caused gas and that buildup affected his weak diaphragm muscles. The doctors also treated him for suspected pneumonia.

He had a brief visit to a SNF for rehab but we took him home the same day because the care over there was really bad. I'm glad that we did not leave him there. The next day, he had the breathing issue and this time we were able to bring him to the hospital ourselves without calling 911 because he was more stable.

After the 2nd trip to the hospital we brought him back home, now with equipment including hospital bed, hoyer lift, and oxygen. We're still learning to adjust and my mom has used leave from work to take care of him.

It seems like he is starting require more attention and we get up in the middle of the night multiple times to help him and it's exhausting for all of us even though we try to take turns.

Questions for you guys, how did you manage the over night care and did you end up leaving your work to take of your family member? I'm planning to research about in-home care but I'm scared to find out that it will just be too expensive for us.

 

[lgelb]

Usually, he would be using a BiPAP instead of oxygen, which, especially without BiPAP, generally accelerates progression by increasing CO2 buildup. I would ask the team about that. Remember, the CPAP you mentioned is not a good idea in ALS, and may contribute to his breathing issues.

Most of us, if it was just one person and a PALS, could not work full-time, even at home, because as you say, much care is required, and sleep can be hard to attain. If there are two+ of you, maybe you could work out a rotating schedule for some of you to work full/part-time.

As for having home care, especially overnight, that might even pencil out if some of you can fund it through being able to work. So long as you guys are around for emergencies, you should be able to find a fairly low-level caregiver (i.e. not as expensive as a nurse or anything like that) who can address his needs during the night, in terms of using a urinal, repositioning, adding/removing covers, adjusting his BiPAP mask, etc.

 

[affected]

Totally second that he needs bipap, not oxygen or cpapa.
It is really hard to find somewhere that can care for a PALS, their needs really need more personal attention.

 

[Bestfriends14]

As Laurie said, your dad is safest on a Bipap as that can help your dad expel excess CO2 build up that happens when someone has weak diaphragm muscles. As for overnight care, it's just me with no help. I get up usually every 2 hours and adjust his legs, his torso, or the covers, whatever he needs at the moment. I don't work but I am a full-time masters student, so I'm a walking zombie pretty much all the time. The one thing I try to do to save my sanity is in the afternoon when my husband naps, I'll nap, as well. For some reason, in his recliner, my husband moves around much less so I can usually get a good 2.5 hours of rest.

We also have help in the mornings so I can zone out to do school work. I find that even though there is a demand on my mind, having help in the morning revives me to do schoolwork and household chores, as I get a much needed ALS break.

I'm glad you were able to get all the equipment your dad needs. For help, have you tried your local colleges or universities for LPN students? Here anyway, you can act as their practicum supervisor and get free help. Not sure what that looks like with Covid these days, but I've had caregiver friends who did that and they were quite happy.

 

[Adviceseeker1]

I've been wanting to post more on here but it's hard to find time. Thank you all for the advice and sharing your personal experiences so far. The bipap is working more for him now that he is used to it. And I agree that he is more rested with the bipap rather than just the oxygen. Although, we do give him oxygen sometimes when he asks for it because it seems to help a little bit at least.

We probably won't look into a caregiver yet but I plan to research on it. I agree that a nursing level caregiver isn't needed yet, just a regular caregiver would be better. Right now we are still rotating between my mom, my sister, and I to help him and sleep with him in the living room where all the equipment is. To be honest, it's definitely a full day of work and I would argue that helping my dad at home is more work than going to work itself but my family and I are trying to manage it and not stress out but it's definitely hard.

It's helpful to know how other people are handling this too so I'm glad when I can hear how you guys handle these situations.

 

[affected]

Please just be aware that oxygen on its own is dangerous for him. Remember PALS die from a build up of CO2, not a lack of O2 and so giving O2 can cause even more CO2 to build up.
I'm so glad the bipap is helping and he is adjusting. If he truly needs extra O2 (and his pulmonologist is the one to determine that) a small amount can be given THROUGH the bipap. It is really uncommon for this to happen until the end stages.

I would suggest that finding a caregiver before you really 'need' one can help get them trained before you are all really worn out. I'm not saying you must do it now, just suggesting that you don't leave it til you all say, oh we 'need' someone. It is easier to find a good person and train them if you are not desperate for help right now.

We all learn together, and I could never have figured things out without the help of wonderful people who were here with me when I was caring for my Chris. So asking is good, and having multiple views in answers you get is great as you go with what fits your situation.

 

[Ruth33]

A,
This all sounds overwhelming to figure out at once. You are doing great, though, and in a short time you will be the expert!
I have been going through many of the same issues. We were fortunate to be able to add onto our ground floor, so we have plenty of space and a roll in shower.
We have not purchased a van. My husband gets around the neighborhood as much as he wants to, with someone accompanying him to watch the traffic. He likes being home, and never wanted vacations even when he was well. For doctor's appointments we hire an accessible van service and it's great. The driver straps the chair in, drops us off, picks us up, and I can take it a bit easy on those occasions.
I would suggest going on YouTube and looking at videos of the different types of lifts, just to get the idea, even if they are not ready for it yet. Don't wait till you really need it because you will be stuck. I was so overwhelmed with the choices with everyone telling me something else. One day I woke up and said I just have to take the plunge. I got the Hoyer Advance 340. It does the job, I am told it's more compact than others. Then you have to figure out slings. I started with the one that came with it and am now looking into another one that Jim recommends.
And it is a full time job! We have not had to deal with breathing difficulties yet. He can type, barely. He can chew and swallow, but I feed him.

 

[JackieZ]

re: bipap
I use a phillips respironics Trilogy and, to be honest, I hate it. I feel like it shouldn't be taking me months to get used to it, but it has. I wear it during the day, which makes sleep a little better. I struggle wearing at night because if I need to cough, I am helpless in bed. I have to alert my caregivers to help.

Try lots of masks. I currently use the Phillips Respironics AMARA VIEW which they consider a hybrid full face mask. I also like ResMed nasal pillows but they cause me to drool. Finding a mask you like is key. There are a ton of options. I read reviews and then ask my RT at my DME provider to get it. They know it's a deeply personal thing, so don't be afraid to ask.

I'm hoping to "fall in love" with the Trilogy like they promised, but having a machine breathe with you is weird and takes time to get used to.

 

[affected]

@JackieZ we have a member here lgelb who has worked with a lot of our PALS to tweak their settings. This may help you and she would work with you privately on this. She may have mask suggestions you haven't tried yet. Unfortunately though, if you have no use of your arms as you say when you need to cough and are helpless.
Other PALS may also be able to help with suggestions so it could be well worth you asking this in the General section as most PALS may not see it here in the CALS section and I'd like you to get as many replies as possible to help out.

 

[Adviceseeker1]

Hi everyone, thanks for all your input. As for roll in showers, do you need a special type of shower chair?

My dad doesn't have interest in going around the neighborhood unfortunately. I've offered for him to come outside and I can roll him around with the regular wheelchair but he isn't interested. That's why I was interested to learn about accessible vans because I know he would be more interested in traveling to family member's houses. Thank you for the information. I will keep looking.

I agree bipap masks are hard to get the right fit. I think it takes some time to get used to and you have to trust it. I was surprised that the respiratory therapist has the ability to change the setting remotely too. I think it uses cellular data.

Does anyone have experience with using a cough assist machine? I am asking a nurse about it to see if we can rent it to help out with phelgm build up.

 

[ARCG]

There are two types of shower buddies, one for tubs and one for showers. We chose the one for showers and we had a 2+ inch lip on our shower, It went over it fine, there is a track that fits over it and the shower seat releases to go over the lip on the track. It isnt inexpensive, but we felt it was less expensive than renovating the bathroom. We also used it for toileting as it fit over the toilet. Not to get too graphic but I bought a plastic cup online that was designed for children, I think, that I clipped to the front when he was on the toilet that enabled him to urinate back into the toilet. I also installed a bidet. He was using all of this until a few days before he passed. It really helped him keep his dignity and he enjoyed his showers immensely. We donated the shower buddy to our local loaner closet after he passed. Hopefully it will help someone else.

 

[Jimi]

I've been using a bipap 24/7 for 2.5 years. It's very important to have a cough assist machine on hand once productive coughs are no longer possible. I use it every morning regardless of if I am congested or not. I think of it as preventative maintenance. As long as I am consistent with this l rarely have issues with phlegm. Think of it as exercise. And FYI, I've been doing sponge baths since10/17. Never had resources for an accessible bathroom. Never had a problem and I am clean. You can do more than you think in a small space on a low budget. Best to you, Jim

 

[lgelb]

The Cough Assist is worth a try, as is a suction machine. Some PALS do well on a combination of both, others one, and others none. It takes experimentation to see what works for him. Start with low settings.

Phlegm can be reduced for some with soda, papaya juice or tablets, keeping furnace and machine filters clean, adjusting room humidity and temperature, treating allergies/GERD, a nasal steroid, warm liquids, and such. When a PALS is coughing, often a change to BiPAP settings is called for as well (turn off backup rate, reduce Ti, etc.)