Can hoyer lift be used for the car? And other questions.

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Adviceseeker1

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Hello, I have a couple of questions regarding traveling. I help my dad who has ALS:

1. Can a hoyer lift bring a patient into car?
2. How to use the bathroom while traveling? The hoyer lift and commode would be at home so I wonder what to do if you go to a friend's house or visit a public area for example. Or I'm worried if my dad will need to use the restroom while we are still in the car.
3. If you need a bipap at all times, is there a portable version of the bipap? If not, is there a safe way to carry a regular bipap with you when traveling? I also have a generator for power but it's bulky to carry around.

Other non-travel questions:
1. If you use Apria for bipap, do you know if they do an emergency replacement if something happens to the bipap?
2. Is CPR done the same way for ALS patients? I ask this because some ALS patient cannot breathe while lying flat on their back.
3. Can a heimlich manuever be done on a sitting patient? My dad mostly sits in bed and it would difficult to get a good angle.
4. Right now my dad is still eating and breathing okay but I'm worried there will come a point where he can't swallow food or medications in the future or that I will have to call 911 if he has trouble breathing. At what point would I know to contact the doctor about the next steps? For example, feeding tube, breathing tube, starting hospice. I have no idea when I need to do these to prevent a sudden medical emergency. And I'm also worried that maybe my dad will refuse feeding and breathing tube and I wouldn't know what to do next.

Thank you.
 

Nikki J

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It seems like he should have power wheelchair and travel in a van. I suppose you could hoer into the car but then what on the other end.

men have more toileting options urinal? Or condom catheter?

people certainly travel around with bipap and it should run on battery for a time

yes cpr is the same. The breathing issue for als is due to weakness in the breathing muscles. If having cpr the rescuer does the work

I think you would have to use abdominal thrusts as with a person who is flat on their back unless you could somehow get in back on them in the bed

you need to talk about what your dad wants. Do it now. Calling 911 for ALS progression breathing shouldn’t have to happen. Of course he might get sick and need emergency treatment - that would be different.

does he go to clinic? They should monitor his breathing. Feeding tubes is desired are best done when breathing is not too impaired, before significant weight loss or if he is having swallow issues like coughing after eating or if he has had aspiration pneumonia.
before hospice he should get all the equipment like power chair etc and if he wants feeding tube and bipap
 

lgelb

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There is one kind of Hoyer, the Liko Golvo, that can bring someone into a car. However, with ALS, the core gets weak and so by the time someone needs transfers with a Hoyer, it is generally best that they ride in a wheelchair for support in a wheelchair van, bus, train, etc. And the Golvo doesn't fold for travel.

The Astral and Trilogy both have rechargeable batteries that they can operate several hours on depending on settings.

The best recommendation for short travel like to a friend's house is to use the restroom before going on the trip. Past that, a portable urinal (some soft ones like the UriBag go in your bag) is not hard to use in a wheelchair, for a guy. You can recline the back of the chair to make this easier, and if the chair has anterior tilt, that helps, too. If his wheelchair does not fit into someone's bathroom, you can find a spot near it to use it, then empty the urinal in the bathroom.
 
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Dot Nichols

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Our home health nurse put us onto the condom catheters. What a wonderful difference that has made in our life! We are about to fly from AZ to WA and will use the condom catheter with the small bag which attaches to his calf. Otherwise I end up in the men's room with him when we can't find the family restroom and naturally, he gets very anxious.
 

lgelb

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In public places, I brought Larry into a ladies' room stall in his wheelchair instead of going to the men's room. Less threatening for all, in my experience.
 
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wishmobbing

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Dot, those condom catheters are gold! My PALS got them to play his last DJ set in a bar that only had a downstairs bathroom. (Germany is incredibly inaccessable.) Later we used them for outings and later he sometimes wore one to bed when things were rough so I could sleep through the night.
 

Nuts

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You have some fabulous questions--clearly you are thinking ahead. Is your dad being seen in an ALS clinic? Multidisciplinary clinics have your dad come in periodically and send a range of specialists in to see him. They are experts in what's coming and are typically good about making recommendations in a timely manner without overwhelming you. Combining what you learn here with the help they can provide will have you swimming in knowledge before long.

You'll find that solutions are a moving target so while it's good to think ahead, but expect solutions to be temporary. Because everyone is a bit different, what works great for one PALS isn't always the answer for another, so sometimes you have to experiment.

The Uri bag was a wonderful tool and typically lead up to using condom catheters. A bigger problem is timing bowel movements--google bowel training (believe it or not!!). As Nikki pointed out, if you do have a lift that works for a car and need it to load your dad, you'd need it to get him out on the other end of the trip. Slide boards are good interim tools, but you still need that wheelchair on the other end. Most people who travel once their legs give out do so in a van with a lift--the power chair rolls up a ramp into the van and is strapped down to the floor.

When the bipap becomes critical, ask about a backup. Some insurance will provide a backup under certain circumstances. I had one die on a trip and sweated it out until the company that provided it got a replacement overnighted to us. That's when I asked about an emergency backup. Once your dad has a power chair, there are all kinds of hooks to use to hang equipment off the chair.

Keep asking questions!
 

Adviceseeker1

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Hi all, thank you for all the information. It's hard to have time to respond quickly.

I'm hoping to try out to use the hoyer lift to the car soon to see if will work. I will most likely have another family member ride the hoyer to test out if we can do it first. If not, maybe we will try to rent a wheelchair van for the weekend.

With the bipap battery pack, does it make it easier to carry around? Is there any attachment that can go on the wheelchair if my dad needs to use the bipap while riding the wheelchair? I also worry that he would need to wear the bipap while being lifted into the car as well.
 

lgelb

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The issue is as much the safety of the PALS belted into a car, who does not have enough motor control to self-transfer into a vehicle, as getting the PALS into a vehicle. And yes, a human or Hoyer lift into a car would also be difficult in terms of maintaining BiPAP flow. Rolling into the vehicle with a wheelchair (yes, there are wheelchair bags and shelves that can hold the Astral or Trilogy) is easier from the BiPAP perspective. The wheelchair order can include support for the machine, or they can be ordered aftermarket.
 

Adviceseeker1

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Would you know of any links for wheelchair bags or shelves? I've been searching online and I've also looked at the bag that the bipap came in. Most of them are for storing away the bipap instead of holding it while in use.
 

lgelb

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The manufacturer of the wheelchair, such as Permobil, makes them available through medical equipment firms and wheelchair suppliers such as Numotion. You can also search on line using terms like Permobil vent tray or ventilator tray. Make sure you are getting the right size if you buy aftermarket.
 

Adviceseeker1

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Hi all,

I just wanted to update you that my father passed away and I was with him. It was so hard for me to watch, I wish I could ask him if he was comfortable. He decided to enter comfort care in the hospital and they started the morphine and I knew what was coming but I feel like it didn't hit me until they removed his bipap. A part of me knew it was the process but another part of me was hurting, wondering if he was feeling the pain. If he did, I hope it was very short. I never really thought it was happening until the very moment. Sure I was nervous the whole time knowing that he was entering hospice care but I kept distracting myself and wasn't really sure what to do or think. When the nurses came to take him off the bipap, I felt like I had not prepared myself for that moment.

Maybe it's just my own thinking but I don't want to tell my other family members that didn't witness it, that I think my dad had a hard time. I was there for my dad but I think it took an emotional toll on me. I can take solace that my dad could see that I was there with him. I pray that he didn't feel pain for long. There's a lot on my mind and I'm glad I can write it here.
 

wishmobbing

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I'm so sorry for your loss! The emotional toll is very real but it's good you where there for and with him. I'm sure he was comforted by that. Much strength for the time ahead. Come here to talk whenever you feel like it. It helps.
 

affected

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I'm so sorry for your loss. I would really advice you seek someone to talk this through with so you can really process and deal with what you witnessed. It was a true gift to your father, and I hope you can find a place of peace with it.
I was with my husband at the end and I know how much I had him medicated and he was actually asleep when he stopped breathing, so that has been very easy for me to process from that side of things.
I am so glad still, that you could give your father what he needed at the end.
 

lgelb

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He did not feel pain. The last thing he was aware of was that you were there, a wonderful comfort for him.

Thank you for supporting his plan, and wishing you much peace and strength. As Tillie says, it is a gift. And as Wish says, since you felt unprepared, it can be helpful to talk it through with a third party.

When your family asks, I would just tell them what happened straight up.

Best,
Laurie
 
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