Old 10-03-2010, 08:24 PM #1 (permalink)
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Default I am so confused about how to move my brother

Me again I'm so confused about how to move my brother. First we thought plane,
then train, but I've talked with a friend who is a caregiver and she said the train is out
because he is non-weight bearing. Also, looking at the little diagrams on the Amtrak site
it looks like the bed (if one got an accessible bedroom) is only approachable from the side. I don't know how one would slide him up in bed.

How can I move my brother? It's about a 2000 mile trip. He does not want to fly, but
we may have no option. I'm looking at alternatives. And really feeling frustrated.
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Old 10-03-2010, 09:21 PM #2 (permalink)
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Default Re: I am so confused about how to move my brother

AbilityTrip.com Contact Us - Disabled travel, Accessible hotels, Wheelchair accessible vacation, Handicap travel, Vacations for disabled, Wheelchair accessible travel, Wheelchair travel, Accessible vacation, Handicap vacation, Disabled travel guide

I have no clue whether or not they could help, but they might have some ideas!
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Old 10-04-2010, 12:16 PM #3 (permalink)
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Default Re: I am so confused about how to move my brother

I'm sorry, I'm not getting why Amtrak is out. Most people in wheelchairs are "non-weight bearing." This page and others give more details on accessibility of the trains.

I had forgotten in my last post that companions do get a discount as well as the disabled passenger.

If it doesn't work in terms of finding a companion, that's understandable, but wheelchair confinement is not a showstopper. Yes, arranging him in bed would require strength, but other than a hospital bed, many beds have to be approached from the side. My husband is 6-1 and was around 265 lb when he traveled in the accessible sleepers. And though he was not in a wheelchair, he has limited mobility, and also saw many wheelchair-dependent travelers w/ companions traveling overnight.
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Old 10-04-2010, 05:14 PM #4 (permalink)
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Default Re: I am so confused about how to move my brother

I think the two words most of us have had to learn when travelling with our PALS are creative and adaptable. There's a good chance no situation is going to be perfect, but for just a couple of days, you learn to make it work. So, you're used to sliding him up the bed from the end. Instead you get him to the side of the bed and swivel. AMTRAK seems, according to their site, to have lots of ways to make things accessable. Not trying to sound unsympathetic.. quite the contrary, I think you will best be able to help yourself ANd your brother if you can step back and take a breath, then look at things with the mindset "How can I MAKE this work...."
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Old 10-08-2010, 10:50 PM #5 (permalink)
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Default Re: I am so confused about how to move my brother

Thank you for your kind replies.....We're still working on it. OK, here's what's happened so far:

I talked to the neurologist who cares for his ALS. She hasn't seen him since August. This
is October. But he seems the same, except for maybe being a little weaker. She said she
would recommend FLYING because it's quicker. BUT she said she wouldn't say he couldn't do a 48 hour train trip. She said he could sit in his chair, and when he got
tired, could be placed in the bed. THAT encouraged me.

My brother and I spoke about it and he was getting excited about the train trip. It follows a
route part of the way that he used to drive as a trucker. He wants to take pictures. He is
also afraid to fly. So we were really looking forward to putting together the train trip.

I need help because I can't do it alone. I can't lift him. Someone medical should go along,
shouldn't they? It's cost prohibitive, and while I may be able to get some help, it's only if
we fly, not for the train. People have the same school of thought: what if something happens
and you're out in the middle of nowhere on the train? What if the train breaks down or there's a problem and you have to switch to a bus? I've also heard the trip is bumpy and it's hard to sleep on the train.

I've checked out the accessible rooms on the train online. I figure if he's in bed now, or in
a wheelchair, he might as well be travelling in the same things. Perhaps the trip will be
exhausting for him and I don't realize that.

Basically, if at all possible, I would like to see him be able to make the train trip, and see if
I can get someone to help to go along. Or, is it unwise for me to do so, and will I be hurting
my brother in the long run, something I don't want to do?
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Old 10-09-2010, 10:47 AM #6 (permalink)
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Default Re: I am so confused about how to move my brother

added for clarity: when he was recently (last week) in the hospital (coming out of a bad nursing home, long story, but he went to ER because they had messed up his shoulder, and was able to refuse to go back and was in the hospital a few days, now he is in a much better nursing home),
the nurse at the hospital said she didn't see why he couldn't do a train trip, as he was sitting/laying down anyway.

He almost doesn't want to move if he has to fly. I think he is really apprehensive about it. He wants to take the
train. If I can make it work, I will do my best, but not sure how.
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Old 10-09-2010, 12:30 PM #7 (permalink)
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Default Re: I am so confused about how to move my brother

If he is adamently against flying then a trip by train seems the only answer. So do it and don't worry about how he will survive the trip. He should be okay and remember it was his choice.
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Old 10-09-2010, 09:52 PM #8 (permalink)
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Default Re: I am so confused about how to move my brother

In total agreement with Joel here... allowing him to have his choice of the train trip is respecting your brother's independence also! In the great scheme of things 48 hours isn't that long. Yes, things could go wrong. Things could go wrong on a plane trip. Things could go wrong anywhere... try not to fret, and look on it as an adventure!
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Old 10-09-2010, 11:14 PM #9 (permalink)
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Default Re: I am so confused about how to move my brother

We're kinda of in the same pickle with needing to get my mom to Florida (not via train though). Our thought has been: If you really want to make this trip and the van is the only way, we'll do it no matter what. It won't be comfortable, we'll plan ahead as much as possible, we'll see about getting some really good pain meds, etc. Your brother will need to prepare mentally and if he truly wants to move close to you he'll do whatever it takes. Sounds like you've got a head start checking out the train design and talking to Amtrak.

You can do it. It won't be easy but you can do it!
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Old 10-09-2010, 11:17 PM #10 (permalink)
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Default Re: I am so confused about how to move my brother

the main thing I'm worried about is transferring him. I really can't "lift" him. But, one stays in the
wheelchair and gets on the train and into the handicapped car in the wheelchair. There would be one transfer to the bed; he can use a urinal, if there was a bowel movement we could use a pad.
It would just be a matter of him sitting up or lying down in the bed. He's in the bed anyway
where he's at in the nursing home. (he said he would like the motion of the train, he was looking forward
to it) Then, there would be another transfer to the chair when we got there. I found a couple of assistive
devices online, like a pivot disc and also a smart lift system that uses a vest and a thing below the knees for leverage.

Also thought of a hoyer lift but I don't think the train car is big enough for that. It's 6x9 with a bed on one
end on the 6' side. Sink and toilet on the other side. "Lots" of room in between, for a wheelchair, but I think
trying to get a lift in there would be too crowded.

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Old 10-09-2010, 11:21 PM #11 (permalink)
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Default Re: I am so confused about how to move my brother

Taminator, I just saw your message after I posted. So, you'll be moving your mom in a van
then? How will she do it, will she lie down the whole way, and you won't be moving her
into a motel at night or anything, right? We thought of a van too, but it's too many days
of driving for us (3 days at least).
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Old 10-09-2010, 11:38 PM #12 (permalink)
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Default Re: I am so confused about how to move my brother

You are over thinking this whole thing. Every time someone suggests something you find another objection. I think I am going to have to change what I said above and suggest you leave him where he is. It is beginning to sound like a bad idea to move him. You don't sound like you can help look after him anyway. Sorry but have you really thought this through?
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Old 10-09-2010, 11:57 PM #13 (permalink)
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Default Re: I am so confused about how to move my brother

sorry if I seem to be overthinking...I haven't seen my brother in several months, since I am
in a different state. I've got a friend who says, no way, you cannot do the train, it's out of
the question. And I don't believe that's true. But, I'm trying to think it thru so I know what's
what so we don't get stuck in a situation we can't get out of that I could have planned
better for. Sorry if I am annoying anyone, I'm doing the best I can.

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Old 10-10-2010, 08:52 AM #14 (permalink)
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Default Re: I am so confused about how to move my brother

We were wondering if it was possible for you to do a small test? E.g. a mini train trip of perhaps 1 hour just so you could try out how you and your brother handle the train and getting around on it and on and off it? Perhaps you could talk with the Amtrak people and ask if you could have a go at the bed while the train is in the station nearby and you had someone to help for an hour or two. That way you could see what works and doesn't work and that could give you some ideas of what else to put in place for a longer trip and perhaps then you would feel confident that the train trip will work out? Don't know if this is a help but we commend you for trying to be prepared and not being cavalier about it.

Shane and Chris
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Old 10-10-2010, 04:53 PM #15 (permalink)
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Default Re: I am so confused about how to move my brother

well now my suggestion will be to contact stu he may have a way of helping you figure this out here is his site... ALSGuardianAngels.com .... best of luck to you and your brother
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