by Jill Gunzel
Throughout the last year that I've been a part of the email support group for caregivers or stroke survivors, I've learned the importance of each of us remembering WE are a part of everyone else's education in stroke and handicap accessibility. In January, Mom and I took a long planned trip to California, for four days, involving air travel, rental cars, and a hotel. When we set out on the trip, we agreed to a few things:
1. We will treat this as an adventure.
2. We will maintain humor, as our initial response to everything we
encounter.
3. We will educate as many people along the way, as possible.
4. When we get home, we'll share what we learned.
SO, in the interests of #4...I'm about to write about our experiences. I am sure, that as some of you more experienced folks read this, you will know better ways to have handled things. PLEASE, share these with the group. Your pre-trip tips helped me tremendously, already. We did a lot of things well, but we learned a lot about what we will do better, next time.
Here is an outline of what I'll cover:
1. Using the trip as a goal for therapy
2. Planning ahead...foreseeing potential problems
3. Accessories to take along....travelling with a commode
4. Arriving at the airport (with luggage, wheelchair, parking, etc)
5. Shipping...wheelchair, commode, luggage
6. Boarding the aircraft
7. Disembarking and luggage claim
8. Rental cars...it took TWO HOURS to get a car that would fit our needs!
9. Hotels and handicap rooms
10. Parking....TAKE YOUR HANDICAP PARKING SIGN WITH YOU!
11. Checking out of the hotel
12.Returning your rental car
13. Another way to board the aircraft
14. Getting your car, when you get home...without getting an airport ticket.
Okay, here we go. "#1 Using the trip as a goal for therapy"
I think it's important to describe Mom's stroke situation, so you can put all of this in perspective with what we were and were not having to deal with. As compared to so many of you, we had a lot going for us in terms of abilities and independence. Mom's right brain stroke was in March of 99. She was left with all her thinking, memory, and speech totally in tact. In fact, we kid around and say the surgeon who did her carotid artery surgery, after the stroke, made things "worse" because he gave her MORE good blood to the brain and now she's smarter and sharper than the rest of us. :)
BUT, her left side was paralyzed. She's regained her ability, enough to "walk" short distances with a four pronged cane. She can also maneuver her wheelchair, stand to do transfers, and she does many things independently, i.e. undressing, bathroom jobs and commode needs during the night.
When Mom had her stroke, she was in the middle of a 98 day world cruise, on which SHE was working as the hostess for about 60 people from a travel company. Her stroke hit when they arrived in Singapore. Her big dream, of course, is to return to hostessing on cruises. But in the meantime, she had to cancel several trips that were already planned. This was extremely disappointing, but part of the reality we have to face after a stroke. SO, we decided to go ahead and plan a different kind of trip, with two purposes. First, she wanted to go see her daughter (my sister), in Los Angeles. My sister has been extremely ill for years, and hasn't been able to get to Arizona to see Mom, so, ironically, it was Mom who had to get well enough to go see Wendy. The second purpose of the trip was to figure out what the difficulties might be in travelling again, so we could determine what accomplishments and abilities she needed before returning to cruising...IF it was even possible.
With all this in mind, we set January as our goal. That gave us six months to work hard in therapy, to develop the abilities she would need for the trip. We told the therapists she had to be able to do things like getting in and out of bed without a bedrail, manage getting up and down curbs, have stamina for longer walks (like to a seat on the plane), and energy for all the one-handed activites she'd be doing while travelling.
Her therapists worked with her on bed mobility and they worked on doing small stairs, ramps and uneven surfaces. She also spent two months doing a semi-independent therapy/exercise program, where she worked more on cardio-vascular endurance and stamina than on particular problems from the stroke. All of this paid off.
#2 During the 6 monts of planning for this trip, we tried to imagine every part of the trip and guess what the potential problems were. I'd call Mom and say, "What are we going to do about such and such?" And she'd say, "I already thought of that." Or visa versa. The biggest concern, was how we'd handle bathrooms when we were in a private home or place where there were no handicap toilets...narrow doors, etc. For this reason, we decided to purchase a folding commode that we would keep with us. We got it from a local "Loan Chest" for $27. More on this in the next section.
We practiced Mom's abilities to get in and out of bed without the bedrail and decided she could do it, even though she preferred the rails when at home. That made less things to carry, but still left her independent to use the commode while I got my sleep each night.
We took along enough meds for our expected 4 day trip AND for an extra week, just in case we got stranded. We figured my brother could always send more from home. We also made sure we had a list of the meds, allergies, insurance cards, etc.
We called the airline and said we were told that they didn't reserve seats, but that Mom could NOT walk far. It turns out they COULD reserve seats for special needs, like her. We also questioned them in detail about shipping the commode and about getting help or special attention on the airline. It helped to know their policies ahead of time. The lady on the phone basically said it was up to the good graces of the person who checked us in. So, when I got to the baggage checkin, and the lady looked at me funny when I said I wanted to ship the commode through at no extra charge, I just said, "I was told that it was up to you, and whether or not you felt kind and helpful, as to whether you'd just ship it through like the wheelchair, at no charge, or give us a hard time about it." :) Then, I added, "Afterall, she can't very well take a 4 day trip without having a usable place to go potty...so...we have to view the commode as being just as important as the wheelchair." By that time, I think she was so confused, she just tagged it and shipped it through.
Of course, we reserved a handicap room at the hotel. More on THAT fiasco, later. The warnings of some of you from this group were exactly right!
Basically, we TRIED to anticipate problems. We sort of EXPECTED things to go wrong, but we were prepared to work them out. I'd written to this group and some of you gave back excellent tips on what to look out for and how to make the trip easier. It definitely pays to spend time visualizing the trip and all the potential road blocks.
#3 Accessories to take along:
We took along many accessories that helped Mom remain independent and left me to rest or work out other problems. These included things like her dressing stick, a plug-in nightlight, her water bottle (for during the night), and the folding commode. At home, she has a terrific set up at her bed. There's just enough space between the side of her bed and the wall, for her to wheel up to her spot on the bed. There's a grab bar on the wall and the commode is at the head of the bed, so she's facing it, when she wheels up there. Once she's standing, there's no way for her to end up on the floor. She'll either fall to the bed, back into the wheel chair, on the commode, or onto the wall. And with the grab bar to hold onto...all of that is unlikely. We couldn't put a grab bar on the hotel room wall, obviously, but we took the commode and figured we'd do our best. (more on how it all worked out, in Section 9.)
Travelling with the commode was a big concern. We really didn't want to just haul a commode through an airport or hotel lobby. From a bicycle shop, we obtained a discarded cardboard bike box. We cut it down to the exact length we needed and it nicely handled the commode AND the bucket. (We got a shorter bucket than the normal ones with most commodes.) The bike box had nice hand holds on each side and worked perfectly. I left it open, until we got to the airline baggage checkin, so the people could see that it was just a "handicap accessory". In retrospect, I should have crossed out the name "Voodoo" on the side of the box. I noticed that the younger crowd was eyeing the box...probably thinking it was a bicycle, and thinking of stealing it. Wouldn't THEY have been surprised if they took it? :)
In general, we looked at all the accessories Mom used at home, and asked ourselves, "Is it more trouble to take it? Or is it more trouble to be without it?" Bedrails lost. They stayed home. But many of the smaller items came along and we were so glad to have them.
#4. Arriving at the airport (with luggage, wheelchair, parking,)
This is one thing we didn't think through, enough, before travelling. In retrospect, I recommend having a third person along. There are just too many times where it's too hard to handle luggage, the strokee, AND the car or your own needs. BUT, we managed. Arriving at the departure area, we drove up and I got Mom into the wheelchair. We denied helpful offers from the baggage handlers because we didn't want to check the bags at the curb, and we didn't want to tip them. Too cheap for our own good, I know. So, I had Mom wheel herself inside the sliding glass doors and I wheeled in the suitcases. I told her to just wait there, until I got the car to the off-airport lot, and returned. We'd left PLENTY of time. BUT, the airport has strick rules that you are not to leave your car unattended in the departure/unloading area. In the 2 minutes that it took to wheel Mom and the luggage inside, there was already a policeman at my car. He hadn't gotten out of HIS car, yet, however...so I went right up to him...stood in front of his door so he couldn't get out (tee hee) and just started talking a 100mph. I said something like, "WOW! I can't believe how difficult it is to manage a woman in a wheelchair AND all the luggage! I wasn't sure whether to leave HER alone or leave the car or risk the luggage being stolen. I just KNOW you don't want me to leave my car here, so I RAN in there and RUSHEd back. Frankly, I'd like to go check the baggage and get her settled, but I'll just bet you don't want me to leave this car here, so i'm just going to move it RIGHT NOW! Is that okay with you?" He was so mixed up with my craziness, that he just said, "Yes Mam...just move the car." LOL
Next time, I'm going to handle that a little differently. I believe my husband was right when he said that the airport has to provide for the handicap and I shouldn't have had to panic like that. I should have just FOUND that policeman and explained my situation and told him I needed a place where I could calmly unload Mom and take care of business. My husband says they are so concerned about law suits or not complying with handicap laws, that even a hint that you'd create trouble for them, will get you lots of understanding in a hurry. OUR plan was to NOT cause trouble and to be as unneedy as possible, but I think my husband was right, in that to some extent, we need to help others realize that handicap needs aren't always being met by some of their rules...like not leaving a car unattended for even a few minutes. I had more problems when we returned home. See section 13.
#5. Shipping...wheelchair, commode, luggage
Most airlines say you can have two checked bags and one carry on.
BUT, apparently the wheelchair doesn't count. They will ship them through
for free. ALSO, as I mentioned in Section #2, they will usually ship other
NECESSARY accessories for no charge. What's important to understand, is
that they are concerned with WEIGHT limits on the airline. We travelled on
United, and they were very good about just checking the commode and
wheelchair.
When checking a wheelchair, you have a couple options. You CAN check it at
the front counter with your luggage. But then, you have to use an airport
chair during your time in the airport. If you've gotten there earlier,
like you should do, then you might have a very long time in an
uncomfortable chair. We thought it was better to keep Mom and her chair
together, until the last minute. The plan was to wheel her right to the
door of the airplane and then have her walk to her seat. They took the
wheelchair at that point, and put it down with the luggage. We had two
tags on it...one was a luggage tag and one was a handicap tag of some kind.
It meant that it had to be UNLoaded first at the destination. As soon as
we got off the plane in L.A. it was faithfully waiting there at the door.
More in the next section, on dealing with "parts" from the chair.
By the way...once you have your bags checked, you still have to pass
through security. Be sure to do this EARLY!!! The person in the
wheelchair has to go through a special area and YOU will be handed all the
"stuff"...the cane, jackets, purses, etc....while a security guard "frisks"
the person in the chair. They're usually real good about it. It's fun to
watch, though. Mom loves it when they say, "Put both arms out." She just says, "Can't do that, sorry!" And then it's fun when hit the orthodic and get that funny look, like,
"HUH? Do you have a weapon in that thing?"
6. Boarding the aircraft
As soon as we got to the gate, I went right to the attendant and explained that we had a wheelchair situation. She wanted to know if Mom could walk to her seat, or if she would need an "aisle chair". The airports have VERY narrow chairs, called aisle chairs...no arms on them. They are made to fit down the narrow aisles and made so people can lift the person and the chair up/down stairs. They strap you in, but it's NOT the most comfortable situation. If you can't walk, though, it's a great deal. You are taken straight to your seat, they help you transfer, and then at the other end they'll meet you with another aisle chair. Be sure to ask for one ahead of
time and remind everyone, along the way, that you'll be needing this help.
In our case, I just told her that we'd called ahead and reserved the front row, aisle seat of the economy section. I said that if Mom could wheel her chair to the door of the plane, I was pretty sure she could just walk to the seat, but we needed time to do it, without people rushing us. They decided to board the whole plane, first, and at the last minute, we followed my plan to get Mom on.
One of the attendants insisted on wheeling her down the breezeway to the door of the plane. She claimed it was company policy, so THEY were liable if something happened. I'm not sure that was right, but we went along with it. At the door, everyone asked, "How can we help?" Looking back, I'm thinking that I should have taken 30 seconds to say what we were dealing with. People just can't tell by looking. But I think it would have been good to say, "Mom is totally here, mentally...but her left arm is paralyzed, and this will be a little narrow and tricky to get to her seat. Just stand by." It would have saved moments like when people reached out to her left side and said, "Here, take my arm." Or when, on the return trip, when she was seating BEFORE everyone boarded, and was in the aisle seat, where everyone bumped her, one lady said, "Why do you keep holding your arm, is it broken or something?" I said, "No, just paralyzed!" She shut up and got red in the face FAST! :)
Anyhow...I told the "helpers" that once Mom stood up, I'd hand the stewardess who was IN the plane, the seat from the wheelchair and she was to put in on Mom's plane seat. Then I handed someone the leg rest and said to put that in the overhead. (By the way, some airlines will store the wheelchair in a closet on the plane. It's up to them, whether they send it down below or keep it in the cabin.) Then, I backed into the plane and had Mom follow me, step by step. In two seconds, they'd folded up the wheelchair and taken it away. We made it to her seat, through about three rows of First Class, with no problems. About two minutes after sitting down, the plane started backing away....so there was NO time to spare.
I have to tell you, at this point, that the look on Mom's face was worth the past six months of work. What an accomplishment, to be sitting on a plane and heading to see her daughter, FINALLY!!!! She was so pleased. And when that plane took off and we were blazing toward California....I said to her, "This is so much better than an electric wheelchair"!!! You're REALLLY going fast, now!" :) It was wonderful.
By the way, she sat on that extra cushion from the wheelchair, all the way, and loved it. Luckily there was no one else in our row, so I was able to spread out and we had a great trip.
#7. Disembarking and luggage claim
Arriving at L.A., we waited until the plane was empty, before attempting to get out. That gave them time to have the wheelchair at the door. I went out and set up the leg rest, and then came back for Mom. As soon as she stood up, I gave the seat cushion to someone and told them which way to put it on the wheelchair. Again, I backed out of the plane, ahead of Mom. This time, the attendant put the wheelchair halfway in the plane....front wheels inside the plane. That made it so Mom didn't have to maneuver the slight changes between the breezeway and the plane. VERY nice!!
At baggage claim, we couldn't find the commode box...only our two suitcases. Finally, we asked someone and realized it was in another area where they had "oversized" packages. This was true on the return trip, also. It had been put in a totally different area from where the suitcases came off.
I got a cart, and loaded up the belongings. Picture this...one hand on the luggage cart (with that commode box slipping off all the time) and one on the wheelchair. Mom and I worked out a system where I helped push, but when we got to corners, I just said, "HELP!" and she'd put her foot down and help do the turns. Again, a third person would have been a huge help. And if we'd known where we were going, we would have tipped someone to help, this time, but we weren't sure of the plan. We hadn't thought this part through, yet.
#8. Rental cars...it took TWO HOURS to get a car that would fit our needs! We were hoping there would be a Hertz counter at the airport. I was planning to ask them to bring a car TO us, rather than making us go to their parking lot on a transfer bus. No such luck. I didn't think there was any way to get Mom out to the center island and get her and all the stuff on a Hertz bus. So, I picked up an airport phone and called Hertz. Lo and Behold, a year ago, they retrofitted all their buses in LAX, with wheelchair ramps. She said, "Just go out there, and they'll take care of you." OOOOKAY!
So, we struggled, but got out to the center island. The bus stopped. The driver motioned us to back up a bit. Then, she LOWERED THE BUS!!! No kidding! It went down about 5", until it was curb height. Then, she pushed a button and a nice ramp came out of the bottom of the door. We wheeled right in. She flipped up a bench seat and told me to position Mom there and lock her brakes. There were straps to tie her down, but we all figured the brakes were good enough. The funniest part was that everyone else loved the ramp, too. They were able to wheel their suitcases into the bus, rather than hauling them up the stairs! :)
So far, so good. Hertz was on my good list. Until we got to their lot. The bus dropped us off in another center island. There were NO luggage carts...cold wind blowing...and there we were...Mom in the wheelchair, two large suitcases, a carryon, and a bicycle box. I ended up tying the suitcases together and dragging everything across the street and into the building, while Mom...who I'd told to "just wait there"...headed down the ramp, into the cross walk, and was almost across the street when I went back for her. She looked at my shocked face and said, "But, I looked both ways, first!" LOL
We made it inside...and through the switchback waiting line. I HATE those, when you're using a wheelchair. I should have just parked Mom at the front, but we wanted to talk. Finally, we got to the counter and used a coupon for an upgrade to a Class G car...the largest...figuring there would be lots of leg room, luggage room, and a huge trunk for the wheelchair. Still, there were no luggage carts available...and no one offered to help. In retrospect, and next time, I'll DEMAND more help.
We got out the nice big Grande Marquis car...dragging all the suitcases, etc.. I helped Mom into the passenger seat, and then I put the wheelchair in the trunk. OOPS!!! The trunk was DEEP, but not wide. There was a big ol' spare tire in there and there was no way to close the trunk with the chair in there. I left Mom there...and went back inside.
I went to the customer service desk...not wanting to get back in line. She was busy and pointed to a stack of papers and said, "I can't help you until I get to all these papers." HUH? She said to go to the next available agent...not to stand in line. Ooookay! I did, and he said, "How about a minivan?" I said, "I don't think she can get up on the higher seat." He said, "Ohhhh yea, my 85 year old little grandmother from the Phillipines can get on it...your mom can." I didn't ask if his grandma had semi-paralysis! So, I went back out to the lot, got the chair out of the bad trunk, put Mom in it...dragged her and all the stuff to another car, about ten cars away. I had her stand by the passenger seat, while I tried to fit the chair in the back. Yep. It worked. Then, I tried helping Mom onto the passenger seat. NO LUCK!!! TOO HIGH!!! Her leg developed MAJOR tone...straight out...stiff as a board, and she started sliding off the seat onto the pavement. I said, "NO WAY!!! We've come too far and achieved too much independence to have to fight a seat that is too high, for the next four days."
So...back into the wheelchair and back to dragging all the stuff back into the building. This time, a bus approached and the driver, a real sweetheart of a lady, jumped out and said, "Why the hell are you two doing this all by yourselves? Why isn't someone helping you?" She got someone to get us a LARGE wonderful luggage cart, and she said , "YOU go straight to customer service and demand help!"
This time, the customer service lady said, "I have time to help, now." DUH!!! We decided a Bonneville might have a good trunk. So, she sent me out to Space 40 to see one. I got there, and there was a Ford minivan in the spot. NOW, I was upset!!! And I was tired, and I was hungry. Mom, on the other hand, was calmly reminding me to smile and remember, "It's an ADVENTURE!!!!!" :)
At one point, after almost two hours there, she said, "Aren't you proud of me, my blood pressure hasn't even gone up?" LOL
After finding the wrong car in Space #40, I said, "Either YOU go check out the cars and/or, just bring them to this door. I'm not running out there, anymore. FINALLY, after phone calls, and HER running out there a few times to check cars, she said, "I want you to try a Ford Taurus wagon. I said, "Are the passenger seats higher?" She insisted they were not.
Sure enough, she brought the car. It looked fine. So, I went out there...with Mom and the luggage cart, and started putting Mom in the car. A nice old guy came and said, "I'll be right back to help you load things. I have to go get my jacket." I ALMOST barked back, "Do I LOOK LIKE I HAVE A JACKET? WHy should YOU be warm?" But I bit my tongue. When he got back, he started handling the wheelchair. I said, "Please. Wait. Let ME tell you what to do to help. There's a system here. I said, "See that luggage cart? Bring it over to the sidewalk by the car and wait." Meanwhile, I opened the back of the car, crawled into the back and removed the springloaded shade, which makes a makeshift covered trunk, and put it on the floor. When I stepped out, I suddenly felt this huge weight fall on my legs. I looked up to see that the "helping man" had tried bringing the luggage cart down the ramp and all my suitcases and the commode box feel right on me. Somehow, I wasn't hurt at all. He was shocked!!! I looked at him and said, "NOW!! Would you PLEASE wait until I tell you how to help!" Okay, so I was getting a little testy...but I'd been there for TWO HOURS!!!! and it was getting dark! And I still had an hour and a half of rush hour L.A. freeways to drive.
Anyhow, I managed to get the commode box, luggage, and wheelchair in the car. It had to be put in just right, because the side doors were so small you couldn't use them for loading. What a mess!
What did we learn? NEXT TIME....we will go to a local rental agency and check out the cars in advance. The designs change each year. We thought for sure that something like a Lincoln towncar would have worked, but no. None of the super large vehicles would do, unless you wanted to push the wheelchair onto the back seat. Number one, I figured that was a great way to wreck my back, and number two, I didn't want to tear the seats, and number three, I needed that room for my sister, when we picked HER up.
SO...the moral is....check out the car types before you get there, and then reserve...not request...RESERVE a certain type. Talk to a manage or supervisor and explain the great importance of having a specific type of car....AHEAD of time!
Meanwhile, I'll be writing a letter to Hertz..praising them for the fantastic buses...but educating them on their need to consider what cars will handle wheelchairs. It's not fair to nicely bring a person to their lot and then dump them there with a wheelchair, no luggage cart, and uninformed people who rent you cars that won't accommodate you. It'll be a nice HELPFUL letter, I assure you.
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