I desperately need travel advice for my mom with ALS

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BellesDaughter

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Hi everyone. This is a long post but I am dire need of advice and any compassionate guidance would be so appreciated. I'm new here but my mom has had Bulbar Onset ALS for the past 3 years. At her current stage of her disease, her entire upper body is essentially no longer functional (she still has use of 3 fingers and she can tip her head back sometimes). She can still breathe on her own. She has a G-tube for feedings that my dad gives her. She also requires regular saliva suctioning from a machine. She needs a lot of help walking and going to the bathroom. They use a stairlift to get her up and down the stairs. She is not yet in a power scooter but I feel that will happen in a few months or less.

Here is my situation: Due to my husband and I living in Baltimore and my parents in Buffalo, I have not seen my mother in almost 11 months. Now, we are finally all vaccinated and feel safer traveling. To add to this, we cannot go see them because I am pregnant with twins and due in just 2.5 weeks (we also have a toddler at home and when the twins arrive, we'll have 3 kids under 2). My husband and I have discussed the possibility of flying to Buffalo when the twins are 4-6 months. However, my dad is adamant about coming down to see us and the newborn twins sometime soon after they arrive. My mom feels scared and reluctant. They have traveled here before when my mom was already diagnosed, but my mom was so much more mobile and able bodied then.

Of course, I want my parents to see their grandchildren more than anything. And with my mom's condition, waiting yet another 4-6 months to see her and for her to see her own grandchildren seems cruel after a year of no visitation. However, I just don't know (a) if traveling with a person with ALS at my mom's stage is even possible and (b) if it possible, what is the best and safest way?! I see a million things that look unsafe or could go wrong. Not to mention where they should stay when they get here. We have discussed everything from setting up a bed in our dining room so my mom won't have to use the stairs to getting a hotel nearby that is disability-friendly. I just do not know what to do on this scenario.

For the travel portion, I see two options: 1. Get a disability-friendly van that can seat my mom and hire a driver to do the driving so my dad can sit next to my mom and give her continuous suction and pay attention to her cues for the bathroom, comfort etc. This way all of her medical equipment could be transported down with her. We'd keep the van while we're down here and hire a different person to drive back. I have no idea about the minuatae of all of this but I have heard such a thing exists! (2). My parents fly on a plane. This looks appealing as well bc the flight is so short (45 min) and because airports are safe in that there are a ton of ppl around to help if something goes wrong w my mom. However, I see so many issues here too: can my mom's suction device just sit out in the aisle? It's big and clunky. Can she reserve a seat that is super close to the bathroom ahead of time? And When she goes to the bathroom, I cannot imagine my dad and her both fitting in there and the door closing...and the plane jostling around (she has no arm mobility to catch on to things.) Even right now in our regular-sized half bathroom in their home, my dad has to pull her pants down in the hallway and then ease her into the bathroom with pants down and position her on the toilet. She also can't wipe herself. How is this even possible in a tiny airplane?

Sorry this is long, but I just do not know where else to turn. Everyone on here seems so kind and I'm hoping for insight. I am devastated not only with my mother's illness but at the fact that we live far apart and I am immobilized with this pregnancy. If the best course of action is to just wait until the newborns are. Few months older, we can do it, but I'm looking for other ways to bring a grandparent's joy to my deserving mother. Please help!!!!
 

lgelb

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Congrats on the forthcoming twins! I think renting the van is more practical than the plane from what you say. FAA rules would prohibit suction blocking the aisle, the toileting issues are as you say, etc. And from what I see, this can be a day's drive even with stops.

I would consider hiring someone on for the whole trip, who could pick up the van (every major city has a rental place) and drive both ways and also assist your dad while your parents are visiting, because you and your husband will have enough to do. I'm sure there's a college student or the like, out there looking for some summer cash, who wouldn't mind a change of scenery, who could also get some Baltimore sightseeing in while your parents are cooing over the twins and your oldest.

Without knowing more about your home, I can't say if it would work for your mom to stay in, but with 3 kids <2 there, if there is a nearby hotel or extended-stay suites that are suitable, that might be preferable toward everyone getting a little sleep.

But you say your mom is reluctant, and I certainly wouldn't plan a trip that includes her without her being fully on board. So I would get a good plan together and present it for her approval.

Best,
Laurie
 

Nikki J

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Agree with Laurie. if it helps your mom to know my sister traveled throughout her ALS course and she had full involvement for most of that time It seems as if the saliva is a huge problem. Has she tried all the medical methods to control it? Constant suctioning sounds absolutely miserable for her and your dad. There are several things to try
 

PALSdottir

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Congratulations in advance for your family's new twins! It sounds like you're all on board to see each other, it's just a matter of how and when. You wrote a lot about the logistics of flying, but you also wrote it's only a 45 minute flight - I think it's likely they wouldn't need the restroom for the duration. I also think that on a flight there would be crewmembers mindful of how to accommodate passengers with disabilities, and you could also call the airline and discuss this in advance. I think it would be more likely the equipment takes up a seat rather than aisle space (whether you have to pay for that seat or not, I'm not sure). However, it all depends on how comfortable everyone is with flying - if they're not comfortable, they're not comfortable.

Renting a van/camper also sounds possible, and is there a personal or family friend who might help out, payment or not? Even Uber and Lyft have handicapped-rider options, I'm sure there are options with car rental companies, and there might be other local services advertising online. I'm sure there are handicapped transportation services. Your family can't be the only one that's faced this.
 

lgelb

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It's not just the length of the flight that creates toileting issues. You have lack of access going through security lines, in the waiting area, while the other passengers are loading, taxiing on both ends, etc. Some of these phases could also create difficulty in suctioning due to regulations. And I would never, ever count on airport staff or an airline crew to bend those rules or provide any other consideration, whatever a customer service rep miles away promised or claimed.

In a pandemic, obviously there are issues with masking and suctioning, respiratory secretions, and the perceptions of other passengers.

Daughter, the issues include more than vehicles available when the normal driver has to be with the PALS. That necessitates a third party. I don't think rideshare is practical for ~300 miles and again you have hygiene issues on both sides.

I agree that longer-term trying to reduce suctioning dependence would be worthwhile, and have linked to a thread with some thoughts.
 

jonico

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Hi there,

I think it is great that you are trying to get your Mom down to visit your growing family. I believe, even if it isn't easy, that they can pull it off. You'll find some pretty inspirational PALS adventures detailed on this forum.

In your post you mention one option being to "get a disability-friendly van" and it sounded like you were thinking of renting one for a week or so. Might they be interested in buying an accessible van? You don't need to answer that here as I know mobility vehicles are pretty expensive and not all PALS/CALS get one for a variety of reasons. I don't mean to pry. I'm just thinking if they owned one, they'd have some time to get used to it and perhaps another family member or friend would be willing to be the chauffer for the trip. They might like to spend time with your folks and see you guys as well... or if not related, may just enjoy helping out and exploring your area.

In any case, I really hope it works out for you... Jon
 

BellesDaughter

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Thank you! I'm going to look into the van rental more seriously. I'm wondering if they even come w a commode, which would save tons of time by not having locate restrooms on the way or take my mom in and out of the car unnecessarily :)
 

BellesDaughter

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Hi! Well, they've tried Botox and some other injectables/pills (?) botox for sure though. It's sort of helpful. I guess it isn't constant suctioning, but frequent enough that my dad could never pull over and help her w it and still make the trip in a reasonable amt of time. Good to know your sister was still a full participant in travel and in life. Thanks!
 
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