Caregiving tips and mobility questions

[Adviceseeker1]

Currently I'm caring for my dad that was diagnosed with ALS. It's becoming more difficult to help him be mobile. My family has considered a power chair but I'm wondering how people transfer from bed to power chair to toilet etc. Does anyone have experience helping a family member with mobility? Please let me know of any strategies or tips.

I also want to know how people split the caregiving responsibilities amongst family or how their days and weeks are handled? How do you handle it physically and emotionally?

 

[affected]

Hi and sorry to welcome you.
Transferring is done with an electric hoist, a common brand is hoyer and we often call them that.
You can search here to get lots of general information too and that can help you then ask more questions.

I had some paid care workers that came in and helped a little, but did the bulk of the caring for my husband. If you have family that can all help that is fantastic. The best strategy might be to all have a discussion about what will work for everyone and find someone that is best able to take on making a kind of roster. Make sure you involve your dad in all this and his wishes.

I took an antidepressant, saw a counsellor regularly and talked here and in private groups daily and it made the world of difference in coping emotionally as it is the hardest thing I've ever done. We will help how we can.

 

[lgelb]

Welcome, while sorry to hear about your dad. In the US, some ALS Association chapters provide "loaner" power lifts for the duration. That is the first place to go. Otherwise, you can try finding a used one or buying one on a site like SpinLife. You can find lots of Hoyer lift videos on YouTube, etc. Your dad will also need a "divided leg" or "U sling" that holds him in the lift. They come in different sizes and are machine washable. These are readily available on line.

I suggest that you get to work on the power chair order with his clinic. Including insurance approval, it can take months, and your dad's progression will continue. You don't want him to lose the ability to go out. Meanwhile, whatever he needs to not fall -- a cane, rollator, manual wheelchair -- is what he should have.

The search link on the top of this page is your friend -- you can find many threads on the questions you are asking. Of course, we are always happy to help.

Best,
Laurie

 

[Adviceseeker1]

Regarding the power chair, are they meant for patients who can still stand? My dad can stand but not for too long. I don't want to risk him falling. Also, how are they transported by car? Can the chair be brought upstairs if you have a two story house?

I did hear about the hoyer lift from my dad's doctor. But currently I'm thinking more along the lines of a transfer board. I bought one on amazon and will try it soon. I'm hoping it can get him to go from the bed to the wheelchair without standing.

Another question is regarding showers. I used to have him go on a transfer bench that can slide him into the tub but since he has a hard time standing now, my family has just been giving him sponge baths using towels and disposable bath sponges. I'm wondering if that is an okay alternative to getting him into the shower.

Also instead of using a toilet, we just have him use a bedside commode because he is still able to slide himself from the bed to the commode. He used to go to the toilet because we had a toilet rail but it's been too risky for him to transfer on and off the toilet because he cannot stand that long.

Sorry for the long post, a lot is on my mind.

 

[lgelb]

Again, it can easily take months to get a chair, so if your dad is iffy on standing, it's time to start the process with your clinic. The evaluation that is required ensures that it will not be a frivolous purchase on the insurance company's part. If you wait until he can't stand, he will require a manual wheelchair that will not support him as well as a power chair, nor is it as usable with the Hoyer. The alternative is staying in bed, hardly a good option.

A transfer board may work for a time, but again, when you need a Hoyer, you really need it, so it's something to get in advance, i.e. as soon as you can. A transfer board also carries a greater risk of falls or injury if someone's core is not completely stable, their legs are caught, etc.

The reason we talk about a ShowerBuddy or roll-in shower is that running water has a number of benefits for the skin and spirit, so we generally try to keep showers going as long as possible, which is essentially as long as someone can stay upright and comfortable in a shower chair or sling for the duration of a shower.

 

[JimInVA]

As my PALS began to have difficulty transferring, we tried a number of alternatives... especially as it related to bathing. For a time, we used a sliding transfer chair that had one side outside the bathtub and the other side was inside the bathtub. I'd seat Darcey on the sliding seat portion, lift her legs and slide her over the side of the tub.

Darcey used to get headaches and would generally feel poorly when it was bath night. I asked her about it, as those episodes always seemed to coincide with getting her in and out of the bath. She said that she really didn't think that they were related. After a while, we were able to move away from the sliding seat in the tub and began to use our newly finished walk-in shower. Now, I was sitting Darcey into a shower chair and could roll her into the shower. The headaches went away and it began to appear that she was really enjoying bath time, again. After a couple of months, she said...

"Remember when you asked me about my headaches on bath nights? Then, I didn't see any connection. But now, with how easy and safe it feels to get a shower, I realize exactly what was going on. I believe I was, as some deeper and hidden level, fearful of the process of bathing. First, I had to transfer from the electric scooter to the sliding tub chair. There was some amount of time that I had my weight on my legs... and I think I was fearful of falling. And I knew that if I fell, you would not be able to get me up on your own. Once on the sliding tub seat, you'd think that I'd feel safe again... but I didn't. When you'd lift my legs so that they would be out of the way of the side of the tub, I think I was again scared of falling out of the seat. And once I was actually sitting in the tub area, I still had the whole of the reverse of the process yet to come. By the time the bath was done and I was safely tucked into bed, I was physically and mentally exhausted!"

"Since we've begun to use the walk-in shower, you're lifting me off the scooter, pivoting and setting me into the shower chair. I'm not having to support myself on legs that don't want to support me well, anymore. I also feel well supported in the shower chair rather than always feeling like I'm right at the edge of almost falling. I'm now enjoying the shower as something refreshing and wondrous... rather than dreading bath night. Best of all, I don't get a headache and I'm not exhausted upon finishing. I guess that I just couldn't see it while actually in the midst of it. Or, perhaps, I was subconsciously trying to bury my fear as we had no other alternatives at the time."

It would not be too long after this point that we quit using the electric scooter and did all transfers with a hoyer lift. Had we known how much better using the hoyer was... ON BOTH OF US... we'd have moved to its use so much earlier!

Anyway... I don't know if our story helps you write yours... but I wanted to put it out there.

My best...

Jim

 

[Adviceseeker1]

Thank you for the info. I didn't realize that you could use a hoyer lift with the power chair. Is a hoyer lift used to bring a patient into any chair? Even on the toilet? Into a car?

When a patient is evaluated for a power chair, do the evaluaters also look at the layout of a patient's house? I'm concerned about the small spacing in our small house and bathroom too.

Is the power chair something that can only be used at home? I'm not sure how it would fit in the car. If it does fit in a car, how do you get your family member from their power chair into a seat in the car?

As for showers, did you have to spend a huge amount of money to renovate your shower into a roll-in shower? I'm looking at the shower buddy too. Is it only useable in tubs? We have a shower with a glass door and at the bottom there is a ledge that you have to step over. Can you use a hoyer lift to get someone into the shower? Can they get hoyer lifted onto the shower buddy?

Another topic regarding CPAP machines:
My dad has tried the cpap mask for breathing but is still not comfortable wearing it consistently. I've heard a bipap machine might be useful. Does anyone have experience with this?

 

[lgelb]

A Hoyer is a necessity for transferring in and out of bed, a power chair, or toilet (if that is practical), but very few will work for a car, and a PALS that needs a Hoyer won't have the core control/strength to ride in a car seat. Once he is using a power wheelchair, the PALS will need to be in the power wheelchair, which will be driven using a ramp, kneeling lift, or level entrance into a adapted van, train, bus, streetcar, etc.

I suggest you check out some videos (search for "power wheelchair," etc.) for the "pictures that are worth a thousand words." I'm sure you've seen someone in a power wheelchair. It can go most places outside the home, except for older buildings, steps, etc.

You will need to make sure the power chair eval includes a home eval or at least a video walkthrough. It used to be part of the package, but in these times, not always. Not knowing anything about your home, if it's very small/narrow, it is possible your home may not be compatible with a power chair (1) without modifications or (2) at all. If so, best to find out soon. But remember, as long as the chair fits through doorways (24-26"), transfers can take place in any room, so long as there is room for the Hoyer to travel. So you will want to measure the turning radius of the Hoyer in the largest room.

A shower chair cannot go over the threshold. Sometimes you can build up the floor or have a little ramp, if there's running room for that. The ShowerBuddy has its own track so that's another option. There still has to be some floor space available in front of the shower, and room for the ShowerBuddy to be pushed onto the track. There are diagrams with measurements on the ShowerBuddy site. There is a tub version but most PALS will use showers for warmth, if nothing else. Think how cold you'd be in a bath if you were only half in it, let alone how hard it would be to stay upright without a strong core.

Your dad should be switched to a BiPAP ASAP -- get your clinic on this. BiPAPs allow for much lower air pressure when breathing out, which is critical in ALS, and have other features that CPAPs don't.

There are nasal masks available that are prongs, a kind of cup over the nose, and a nylon parachute over the nose. Most people can find comfort with one or another. cpap.com offers free return insurance on many of its masks and offers a larger selection than most equipment vendors.

Ideally, a PT, OT or nurse at your dad's clinic can become a resource on some of this stuff. Do you have a contact that you can call on?

 

[Adviceseeker1]

Would you say most families start renting/buying a van that can transport someone in a powerchair? Or do most families have their PALS stay at home? I've asked the nurse the same question about getting my dad in a car and it sounded like the solution to them was for the patient to stay home.

I believe our house might be too small for something like the shower buddy. I wonder if other people experience that too, realizing their house wasn't built to be accessible? :/. The nurse told me that it's okay to do sponge baths for showers for now and to use the commode for the toilet.

Fortunately, for us the power chair eval also includes a PT and OT coming to the house to see the layout like you said. I've asked my parents about this and also about the hoyer lift and they felt that it wasn't time to do it yet but I wish they started to think more in advance even if they might not need it right away.

Thank you for mentioning the bipap. Now I'm sure that its something that he should try right away since we had no luck with the cpap. I'm going to bring it up with the nurse.

 

[lgelb]

There is no reason to stay at home! Sounds like you need to find a new nurse to talk to. What clinic do you go to?

Again, most transit systems are fully compatible with power chairs, or you can rent a van for a day or weekend for longer excursions. Just like renting a car, the rental firm will even drop it off, for an extra fee.

It's certainly not too soon to ask your local ALSA chapter about a Hoyer loaner, and they may be able to help with other needs as well. Some of them will send a nurse to the home to get acquainted and see what you might need, and you can accomplish a lot via Facetime/Zoom/Skype, walking your laptop or phone around so they can see the place.

The Shower Buddy stacks against a wall for storage -- the issue is how many feet you have in front of the shower. The track detaches once your dad is in the shower, then reattaches to get him out. I'm pretty sure we only had a couple of feet in front of the threshold, but look at their diagram.

 

[Adviceseeker1]

I'm wondering if the nurse misunderstood my question. Maybe she was just recommending staying home to do video appointments. But I'll try to ask her again about general traveling.

Do all families with ALS eventually have to get a van that can fit in a power chair? I don't think my family uses public transit all that much. The hope right now is that my dad can still stand long enough to get into the car for now but I'm unsure about later on (we have a toyota highlander). I was thinking he can try using a transfer board with a car that is more leveled to the wheelchair (like the honda accord).

Oh a Hoyer loaner is a good idea that I didn't think of. That way, if my parents aren't wanting it yet, they can still give it back. I'll look into that. Our house and bathrooms are pretty small though. My parents might have to end up switching their bed to something smaller. I think change in environment is difficult, especially for aging parents who are used to a certain way. I am also starting to speak more to the local ALS chapter.

The shower buddy sounds like a good idea. Is it something that you used with your family?

 

[lgelb]

A transfer board would be a perilous approach. We started with my husband sitting on a rotating disk in the car to help get his legs closer to the door for a short time, where I could sort of pull him up and out, but that was a matter of months, not years, with no thought of a transfer board. And he was a fairly slow progressor.

No, all families do not end up with a van. If you do look into it, you will want to look at used as well as new options. ALS doesn't last forever.

We used walking (we walked and operated his chair) and transit. It's never too late to become a transit rider, if there's transit available. If not, some communities have additional paratransit options for people who use wheelchairs, who are not near a regular bus or train stop.

Yes, the ShowerBuddy extended my husband's showers for a year until he no longer had the core strength for it. We sold it to a person who had a stroke.

Your dad is going to need a hospital bed. That takes a couple of extra inches out from the wall when the head goes up and will need to be at least 36" wide, 80" long. If he's tall, 84".

You may need to figure out if this home is suitable for your dad. The ALSA and/or your clinic's occupational therapist can help you make that determination.

 

[JimInVA]

We were extremely lucky in that we had the very BEST ALS org folks around. All they wanted to do was solve any problem that we made the effort to tell them about. Some of their solutions were life changing. As a caregiver, I only knew what I knew. Fortunately, they knew all the many things that I didn't (and didn't know to ask about).

I would so encourage you to reach out and see if they'll send someone out to you. Let them know any and everything that seems to be a problem and then see what they recommend. For us, the vast majority of their recommendations came with items loaned to us at no cost from their "Loaner Closet".

My best...

Jim

 

[nona]

Has your father attended an ALS clinic? Where is he being treated?

 

[Adviceseeker1]

@IgelB: Thank you for sharing about how you and your husband got around, I will keep all that info in mind. Can you go over what the benefits are for a hospital bed vs a regular bed? Are they electronic?

@JimInVA: Thank you for sharing the story about your wife and using the hoyer lift for the showers. What kinds of things did the ALS org go through at your house? We had an OT come over for a home visit but I didn't feel like they added much information that we didn't know or didn't try yet.

@nona: My dad has attended a kaiser clinic. They have home health care but I don't think they have done very much. The PT and OT came a few times to do some exercises and talk about wheelchair cushions but it seemed pretty limited. I haven't asked for more visits though since my dad feels more rested without company coming into the house.

I have a couple of questions for anyone who might have answers. I'm glad to be able to ask questions on here when I get the time and chance.

1. Irritable bowels and bloating- Seems like my dad is also dealing with irritable bowel syndrome. He has constant bloating, gas, and wet stools. I wonder if it is ALS related. Even if its not, any tips for bowel issues with ALS? It's not a good combination for sure.

2. Edaravone/Radicava- I've read about a drug called Radicava for ALS. Is that something ALS patients have tried? I've also read that it is IV only and very expensive.

3. Mucus control- Are there mucus suction machines that can help with phlegm?

4. Movement and bed- Is there going to be a point in time for ALS patients where they cannot move or toss around in bed and will need overnight supervision?