Going to WDW with terminally ill parent

[LKMang]

We have (very quickly!) put together a trip to WDW for our family. My mother has terminal cancer and her dream has been to take her 2 grandsons to Disney. We were originally planning on going in December, but her health has started to deteriorate since her latest chemo treatments, so are leaving in 2 weeks for 2 days at MK.

Her mobility has decreased greatly in the past few weeks. I was originally planning on renting an ECV at the park, but now I am leaning towards renting from a private company so I can guarantee that we will have one. We are renting a mini van, we shouldn’t have any problem transporting it in the back, right? I am also thinking we may need to rent a regular wheelchair instead because I don’t know if she will be able to drive the ECV herself and she may need someone to push her around. Do these usually run out at the park?

We are renting a house pretty close to the park. I told my mom that we would drive her back during the day to the house if she needs to go back to the house for a nap or rest.

Should we get a GAC? She has definite mobility issues (which hopefully the ECV will help), but is also dealing with muscle weakness and sensitivity to the sun.

Any and all tips are welcome. We have never gone on a trip like this before. I am soo scared and know this will be an incredibly sad, emotional time, knowing that this will probably be my mom’s last vacation with everyone. I really just want her to be as comfortable as possible. She was so worried about going that she originally told us she didn’t want to, but I told her that we will do whatever she needs cause I know she really wants to go.

 

[pudge the fish]

I would buy her a BIG sun hat as it's just not waiting for a ride in the sun. it's sunny all over the parks. walking from one ride to another is HOT and Sunny!
Lots of sun screen

you may want to check out the first aid stations for a rest as I have found it takes at least 30 minutes to an hour to get out of MK to the car.
you have to go from MK to the Ticket center and then to the parking lot.
then to the rental house...that could be tiring in itself to do more than one time.

I think it takes a bit of strength to do an ECV.. I could be wrong but i have friends who like a WC as they just aren't able to cope with an EVC due to muscle weakness.
I am sure those more experienced with an evc will be along to correct me
WC 's normally don't run out
Just take it slow and make sure everyone understands that grandma needs to take it slow.

have a wonderful trip! it is awesome that you are taking mom to WDW.

 

[Cheshire Figment]

Ujnder thre circumstances I would really recommend a wheelchair. Yes, pushing is involved but driving an ECV does require alertness as well as body control.

Several years ago, when my mother was only 91, she was visiting and I took her to Epcot. I "forced" her to use an ECV (she did not give up her car until 94) and we were there for eight hours, went on three rides (Soarin' Living With The Land, and Figment" and saw American Adventure. We arrived about 11:00, had lunch as Sunshine Seasons, and left about 7:00 after dinner at Alfredo's. And she was exhausted even with the ECV.

 

[arminnie]

I am so glad that your mother is willing to go. My mother and I had a trip planned with my aunt (mother's sister) and her daughter (my cousin). Mother was terminally ill but actually lived another two years.

She refused to come with us because she "wasn't up to par". I've always regretted that I never got to experience that with her. She was on chemo (breast cancer that had spread), but was in fairly decent (but wheelchair needy) shape at that time.

 

[Bete]

First, please make sure about the sun hat and have sunglasses for her. Use plenty of suntan lotion, as well.

It sounds like your mom has not done an ECV. This is not the time to learn. It's only 2 days. MK is especially bad with kids darting out everywhere. Parents are guilty, too. You can bump into things, too which would be no fun for your mom. Ride queues zig zag and that can be a little tricky with an ECV. There are some tight spots. In ride queues it can get dark, too. As newbies you will not always know where to go with the ECV or the wheelchair. Ramps can be slightly hidden. Make sure you ask cast members to lead you where you need to go. The GAC may help for the sun issue.

Getting an ECV in and out of a car is not fun. You haven't mentioned if your hubby is going or not. We don't know the ages of your children. If they need strollers I recommend getting the double stroller. Then if your hubby is going you will have one person free to do the wheelchair. You can alternate between the stroller pushing and the wheelchair pushing if that's what you need to do. Please note, Buzz Lightyear has a way to stop the ride for you to get on that ride whether you are in an ECV or a wheelchair. If you have the wheelchair you can get on the this ride with the wheelchair; however, you can't do the same with an ECV.

Whether in an ECV or wheelchair you will need to learn (disboards has some good posts about it) how to do the rides and which ones can be done especially with the wheelchair. If mom can transfer you may have to get off the ECV and into a wheelchair for some rides for queue purposes.

You didn't mention the age of your mom, but it's an incredibly long day going through the parks in a wheelchair or ECV. In a wheelchair she will last longer; because, she won't have the responsibility of doing the ECV. She can rest more that way. A wheelchair rental is cheaper, too.

Please remember, if you rent from an outside company for a scooter you can have some issues. First, I doubt if they will deliver to a house; you may have to go there to get it. This is extra time away from the parks. You will probably have to drop it off when done, too. If it breaks down, it will take a while to get another one from an outside company. You may find yourself having to rent one from Disney in the parks, anyway in this situation. Next, you are responsible for charging it up. It won't last two days on one charge; unless, you get an incredibly big one which would not probably come apart and therefore without a lift you won't be able to get it into a car or van. All scooters are not broken down for transporting.

For two days, you won't save that much by going to an outside company for an ECV. At Disney, you get a replacement in a half hour or so if it comes up. It happened to us once in about ten times renting from them. If you get to the parks early you won't have an issue with getting an ECV rental. You always have the alternative to get a wheelchair there if by chance an ECV wasn't available. You could be put on a waiting list for an ECV. Disney might give you credit on the wheelchair if you upgrade to an ECV. You can ask if this happens. In ten trips we had to be put on a waiting list once. We showed up past 11am at DHS. In about an hour we had one.

Good luck. If you have any other questions, please feel free to ask.

 

[SueM in MN]

I agree with the other posters about wheelchair vs ECV.

Using an ECV does help with legs not getting tired, but it comes with a certain 'energy cost'. It is driving a moving vehicle, so takes concentration and alertness. She will get much less tired using a wheelchair than an ECV.
There are some attractions where she will be able to stay in the wheelchair for the ride, but would need to transfer from the ECV. Each time you can avoid a transfer is energy use avoided.
These are the attractions at MK where the guest can stay in a wheelchair or ECV for the whole attraction:
Magic Kingdom® Park
Can stay in a wheelchair or ECV:
Ariel's Grotto
Castle Forecourt Stage Show
Country Bear Jamboree
Donald's Boat
Fairytale Garden
Frontierland® Shooting Arcade
Galaxy Palace Theater (seasonal)
Judge's Tent
Jungle Cruise
Liberty Square Riverboat
Mickey's PhilharMagic
Mickey's Country House
Minnie's Country House
Monsters, Inc. Laugh Floor
Shrunken Ned's Jungle Boats
Toontown Hall of Fame
"The Enchanted Tiki Room Under New Management"
The Hall of Presidents
Tomorrowland Arcade
Walt Disney's Carousel of Progress

These are attractions at MK which have wheelchair accessible ride cars. She would be able to stay in the wheelchair, but would have to transfer from an ECV to a wheelchair:
Buzz Lightyear's Space Ranger Spin
"it's a small world"
Stitch's Great Escape!™
The Magic Carpets of Aladdin
The Many Adventures of Winnie the Pooh
Tom Sawyer Island Rafts
Walt Disney World Railroad

These attractions at MK require a transfer from a wheelchair into a ride car. I would recommend splitting the ones she wants to go on between the 2 days you plan on going. Even with splitting them up between the days, you probably will want to alternate things that require a transfer with those where she can stay in the wheelchair. I am adding duration of the ride because it may help you decide whether or not the energy cost of getting on is worth the ride.
For all of the rides that require a transfer, you can bring a wheelchair very close to the ride car (even touching if you need to).

Astro Orbiter (a spinning ride in Tomorowland. It usually has long lines because all guests need to ride a small elevator to get up to the ride area and only a small number of guests can ride at a time).

Big Thunder Mountain Railroad (a fast roller coaster ride. It does bounce you around, so I would not recommend it)

Cinderella's Golden Carousel (a merry-go-round; lasts about 1 1/2 minutes)

Dumbo the Flying Elephant (a spinning ride in a Dumbo themed flying vehicle. The ride lasts about 1 1/2 minutes. Not that hard to get into; there is a vehicle outside the ride that you can look at before riding).

Mad Tea Party (a spinning ride; lasts about 1 1/2 minutes. Some people are unsteady when getting off. The ride cars are teacups and are on a spinning platform. Guests can't control the spinning platform, but the teacups themselves are under your control and you can choose to spin it or not. Ride car can be a little difficult to get into since you need to step over the 'saucer')

Main Street Vehicles (these include vintage cars and a horse drawn trolley and go between Main Street and the front of the castle. You need to be able to step up to get in. If she wants to ride, someone else could push the wheelchair to the end point. It takes about 10 minutes to ride).

Peter Pan's Flight (This ride requires a fast transfer since there is a moving walkway which can not be stopped or slowed except in emergency. The ride is only about 1 1/2 minutes).

Pirates of the Caribbean (This is a longer ride - about 10 minutes. This is a link to a thread about Pirates and the challenges of riding it)

Snow White's Scary Adventures (This ride lasts about 1 1/2 minutes. It does come to a complete stop and would not be a particularly difficult transfer).

Space Mountain® (This is a roller coaster and I would not recommend it)

Splash Mountain® (This is a cute ride that mixes slow boat ride with some extreme drops. The ride car is difficult to get into and out of because it has very high sides. The ride is about 6-8 minutes long).

Swiss Family Treehouse - Guest must be ambulatory. It involves walking up and down many steps.

The Barnstormer at Goofy's Wiseacre Farm (a short roller coaster ride)

The Haunted Mansion (This is about 8 minutes long and is an easy transfer as long as you load at the exit where the moving walkway can be stopped or slowed. They will ask if she can walk 200 yds; if you choose to do that, she will need to walk into the "Stretching Room", where she will stand for about a 2-3 minute show. Then there is a slow walk in a darkened room into the boarding are. The moving walkway can't be stopped there).

Tomorrowland® Indy Speedway (a very low to the ground small gas powered racing car. Because many of them are driven by children, your car may be bumped hard from behind. The cars are very noisy and the gas smell is strong. I would not recommend it because of those things).

As was mentioned, First Aid is a good place to rest. They have private cubicles with cots where she could lie down in a cool, quiet, dim place to rest. As was mentioned, it can take more than 1/2 hour to get out of MK to your car, then the drive back to your hotel. Getting back in is similar.

There is information about Guest Assistance Cards in post # 6 of the disABILITIES FAQs thread (there is a link to that thread in my signature or you can find it near the top of this board). A GAC may not help you that much because you will still have to contend with the heat and conditions getting between attractions. GACs only help for attractions, not places like restaurants, etc. and will not help you avoid heat and sun while going between things.

 

[SueM in MN]

Also, get clearance from her doctors to go, if possible. You will need to bring along contact infomation for her doctors and if possible, bring along a summary of her care in case she has any problems. Her doctors can probably help with where to go in case of problems.

I see you are coming from New Jersey. It's important to keep in mind that the trip itself is going to be tiring for her. Don't be shy about asking for preboarding. You can take a wheelchair right to the door of the plane. You may even want to look into renting/obtaining a wheelchair from home before you leave. Mobility devices like wheelchairs can be gate checked - you basically tell them before boarding begins that you want to gate check the wheelchair. They will give you a gate check tag to put on the wheelchair that instructs the baggage handlers to return it to gate when you land. You can take the wheelchair all the way to the gate and leave it there for the baggage handlers to take. It will be waiting for you when you get off.
There is no charge for this.

 

[LKMang]

Thank you so much for the responses. You have given me a lot to think about!! I am now seriously considering getting a regular wheelchair for her. We have a lot of people going on this trip – 7 of us all together, including my son (17 months old), my nephew (2 years old), me, my husband, my sister, my cousin, and my mom (who is 57 years old). So we have enough people to push 2 strollers & a wheelchair. I know my mom is going to feel guilty about having someone push her around, but it will be easier than her trying to use an ECV. She was apprehensive about it to begin with (not just because of the weakness, but she has never been good at/liked steering things, especially in a crowd). I’m gonna talk to her this week so we can decide how we want to do the rental. I think we’d rather have the wheelchair before we get to Disney. I dunno how she is gonna feel about it. She is not completely immobile yet (she still drives, goes to the store by herself). But she has good days and bad days and I’m gonna try my best to be prepared for her to have a bad day there. We are hoping that she will be okay for a few hours in the morning at the park, then go back to the house for a rest and maybe come back after dinner.

Thanks for all the info on the rides. I don’t think she is planning on riding too many things, but I will be checking out your lists to be prepared.

Pudge – thanks for the info on the first aid stations. I thought I read somewhere that they had a place for someone to lay down if necessary.

arminnie - my mom’s greatest “wish” has been to see her grandsons at Disney. I know she is apprehensive about going and not feeling great, but I know this will be a really important memory for her to make.

bete – thank you for the advice about the ECV. I was able to find a couple companies that will deliver them to our house (am now considering renting the regular wheelchair from them).

SueM – we have already gotten clearance from her doctors for this trip (his exact words were, if I could write a prescription for a trip to Disney, I would ). Thank you for the info about the plane. We are planning on getting a wheelchair at the airport to bring her to the gate (if we don’t rent one in NJ) and definitely preboarding.

Thank you again for the advice. I am trying really hard to look forward to this trip, but it is really emotional for me right now.

 

[3BoysRDisneyFreaks]

I just wanted to say I am sorry about your mom. I hope you have a great time. Make sure every adult in your group as their own camera so you get a ton of pictures.

Sarah

 

[SueM in MN]

This is a picture of one of the First Aid rooms from Magic Kingdom.
There are 2 cots in some of the rooms and one in others.

If several of your party have cell phones with nationwide service, make sure she has one of them (or someone who will stay with her in First Aid to rest) so that she can call when she needs to or when she is done resting.

Also, it is hot this time of year at WDW, so plan that she will get tired more quickly than you might expect. The heat really takes a lot out of you - especially if it is humid too.

 

[arminnie]

I am trying really hard to look forward to this trip, but it is really emotional for me right now.

Shoot I'm getting emotional just reading about it. I'm in your mother's age bracket (my mother's been gone 12 years now). My best friend from college has terminal brain cancer. We're trying to get her thru her son's wedding next month out of state.

Of course I've been emotional since I lost my father a few days before Christmas this past year. I had planned for us to go on a DVC cruise and stay at AKL concierge about 4-5 years ago. My dad ended up having an abdominal aneurysm, we never got to go. Some REALLY wonderful people here on DIS sent me some of the collectibles from the trip. I mean really nice things like a clock, water carafe and glass, ornaments - just a whole box of great stuff.

You have no idea how much the thoughtfulness of people that I've met here meant to me.

 

[Deesknee]

First, sorry to hear your Mom has this hideous disease. Good thoughts, wishes, and prayers to all of you.

Second, if you are renting a car, I am assuming you are flying. You may want to see a medical supply place at home & bring the chair with you. You may find it more convenient. Most airlines let you gate check the chair. Then you will have it at the airport, where I'm sure she will need it as well.

I hope you all have a very magical trip, that will warm your hearts for years to come.

 

[M5ward]

So very sad about your mother. I hope you make wonderful memories on your trip to the World. My only suggestions would be: if you decide to rent a wheelchair at home, see if the medical supply company has sunshades that attach to the chair. If not, maybe get a smallish umbrella to shade your mom; a hat is a good idea, but the heat may make it uncomfortable to wear all the time. Coolibar (http://www.coolibar.com/) has a great selection of SPF hats.

Wishing you a magical, memorable trip.

 

[WheeledTraveler]

I'm really sorry to hear about your mom.

If she's at all resistant to renting the wheelchair before you leave for Disney (for the airports, etc.), you could always point out that having it is a way to conserve energy so that she can spend more time enjoying herself and with the family once there. Traveling is rough and dealing with airline assistance tends to eat energy so the less you need to worry about it, the better.

All airlines in the US allow you to gate-check a wheelchair and depending on the plane and the wheelchair, she may even be able to stow it in the cabin rather than have it go under the plane. Don't be afraid to ask about this because legally wheelchairs have priority for the cabin's closet. (I've only seen this actually work once as most of the closets are too small, but it does happen sometime).

 

[plutos_pal]

Just wanted to say I am sorry about your mom - I hope she will enjoy many moments of joy with all of you during the trip!

 

[maroo]

I just wanted to say that I am sorry about your Mom and I am so glad that you are taking this special trip.

I agree with everything everyone else has said.

I just want to add that if I was taking the trip, I would make sure and talk to her oncologist. I would want to make sure I had plenty of pain medications and nausea medications for the trip - she may have a bit more pain or nausea as she is riding rides or out in the weather, etc. I am sure that they will be fine giving her a few extra to make sure she has enough for her big trip.

And push fluids - dehydration is the biggest drainer of energy when we travel.

I hope you have a simply wonderful time.

 

[dclfun]

I'm a little late to this thread but also wanted to add my support and best wishes for this trip. It's definitely time to make some special memories and treat your Mom to a nice vacation. Just wanted to mention that if you are planning on doing some TS ressies or a dinner show to try and book in advance, esp. since you are a larger party and some locations are hard-to-get. Since you are staying at a house I figured you might at least be having breakfast there. Is there one special thing she is wanting to do or that you'd like to do as a family? I'd try and prioritize a bit just so you're not overwhelmed. You might consider purchasing the Photopass CD in advance ( for the discount) and be assured of some really great photos. Definitely use the First Aid stations- the nurses there are wonderful and supportive. If she has any refrigerated meds, they can be stored there ( not sure if that was already mentioned). Anyway, I hope this trip is wonderful for all of you- remember to relax and focus on your family and the time spent together.---Kathy

 

[LKMang]

Thank you all for your great advice and thoughts. Unfortunately we have had to cancel our trip. My mom's health has gotten worse and she didn't feel she was up to making the trip down. We were supposed to leave tomorrow. Instead hospice will be visiting her. We are obviously devasted and I'm so sad that she won't be able to see her grandsons at WDW. Hopefully the information in this thread will be able to help someone else in the same situation.

Thank you again for your kind words.

 

[cm8]

Thank you all for your great advice and thoughts. Unfortunately we have had to cancel our trip. My mom's health has gotten worse and she didn't feel she was up to making the trip down. We were supposed to leave tomorrow. Instead hospice will be visiting her. We are obviously devasted and I'm so sad that she won't be able to see her grandsons at WDW. Hopefully the information in this thread will be able to help someone else in the same situation.

Thank you again for your kind words.

, I so sorry to hear of what has happened. May you find strength and peace as you have never known before.

 

[SueM in MN]

Sorry to hear about this turn of events.

Sending prayers and good wishes for a peaceful and comfortable transition.

I am going to close this thread at this time since the OP does not have need for any further information.