WDW and terminally ill adult

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I would think the Dream Foundation would be able to help set things up for you, much like Make-A-Wish does for kids. You should contact them directly about your concerns and find solutions.

I was told the genie passes are distributed exclusively by GKTW to their guests or via partnering wish-fulfillment organizations. Since the Dream Foundation works only with terminally ill adults, they don’t meet the minimum requirements to be a partnering org with GKTW.
 
If you do get a DAS then she will have to ride everything that she uses the DAS for she can not get a DaS return time and then say to her kids ok go on this ride without me. If you have not seen the DAS stick then I would read it. The DAS is not DX based but need base she may have a need for the DAS. but she you who ever is going with her will need to think about her needs and how this has to do with waiting in line ( that does not have to do with stamina or the use of a wheelchair)

for the most part unless you are going during a very busy time or you are going opening day most wait time is about 30-45 minutes beside for the top rides at the park so getting to the park when they open ( really 30 minutes before park opens) and then having FP for about 60minutes after park opens doing your 3 FP rides and then if she needs to go back to the hotel for a rest or resting in the park, and back fro the night for night time things

I’ve read extensively on the DAS. Fully aware of its limitations, but as I stated in the above post I was hoping she could get one and rest while the kids enjoy other attractions, and then we would get her when the wait time is up/she is ready to get going again.

Is late July/early August considered a busy time? I’ve only ever been during September. My sister and her kids have never been at all and I’m really concerned the first time frustrations coupled with her limitations are going to keep it from “magical” experience she’s expecting.
 
Fast Passes for sure .. another thing I was thinking was that she may have more energy than you think because she wants to do it. I know that sounds silly but I've seen people do it before. Make sure you plan everything out.. what rides are a MUST.. if you make a top 5 list and get those top 5 things done it will be worth it.

I think the most important part is her spending fun times with her children. Encourage each of them to pick the big important things and get those done on fast passes. What does your sister say about all of this? She wants to go right? I'm sure she is dreaming and thinking about it all.

You are a wonderful sister for doing this for her and her children. God Bless.

I’m hoping we’re still able to get any decent fastpasses by the time they issue our tickets. My sister and her kids have never been before (which is why it’s her “dream”), so I’m concerned she’ll be disappointed/frustrated if it’s not the “magical” experience she expects.
 


I'm very sorry to hear about your sister.

Maybe reframing your expectations about the trip would help to make it a positive experience for you. I went last year with a 1 and 3 year old and we kept telling ourselves that if we went on 3 rides, that would be a great day. Anything more was a cherry on top. When we did more rides, we were pleasantly surprised. We were mentally prepared for nap time, meltdowns, etc. and so if they happened, it was ok, and when they didn't, we felt like it was a lucky break.

I think quality time and fun memories would be a great goal for your trip. That could happen during a rest break on a bench just as easily as riding a ride or having a TS meal. Disney is magic, my heart breaks for your sister and her children and I will say a prayer that they get to experience the joy of Disney on your trip.
 
I’ve read extensively on the DAS. Fully aware of its limitations, but as I stated in the above post I was hoping she could get one and rest while the kids enjoy other attractions, and then we would get her when the wait time is up/she is ready to get going again.

Is late July/early August considered a busy time? I’ve only ever been during September. My sister and her kids have never been at all and I’m really concerned the first time frustrations coupled with her limitations are going to keep it from “magical” experience she’s expecting.

there is no holliday but I am not sure if kids are in school yet when the kids go back to school it does get quieter

I’m hoping we’re still able to get any decent fastpasses by the time they issue our tickets. My sister and her kids have never been before (which is why it’s her “dream”), so I’m concerned she’ll be disappointed/frustrated if it’s not the “magical” experience she expects.

I would ask her what would make this trip magical for her and then fouse on this
 
I'm so sorry to hear about your sister. I'd set the expectations for one big thing a day with your sister and anything after that would be icing on the cake. Perhaps one day you could do a character breakfast outside of the park and then she could go back to the hotel to rest while one of you takes the kids to the parks. Then the next day, she goes to the parks for three fast passes and then back to the hotel. I wouldn't plan on any nightime park time. Maybe a fireworks viewing from outside the parks?
 


Very sorry about your sister's diagnosis. But glad that she will get to take the trip with her children.

Although fastpasses are great and I would definitely use them, I think a huge benefit of the DAS for her would be the return time does not expire like the fastpasses do. So if she were resting at first aid when the return time comes up, you wouldn't have to rush her to get to the ride within a certain time frame like it is with fastpass. I believe they don't expire until the end of the day, so whenever she would be up for it, you could ride. However, as you probably have read, you can only have one return time on the DAS, so until that is used or cancelled, you wouldn't be able to request another one. Also, anyone included on her DAS (you, your sister, and the children) would be able to request a return time without your sister being there. But she does have to be present when you go back to actually get on the ride (and she must ride of course).

I would call the dream organization and express your concerns. Although you were told the genie passes were for children, there may be something else they could work out for you.

Hope you have a great trip! It will be emotional I'm sure, but hopefully not stressful.
 
Depending on where you stay offsite, you could spend a lot of time and energy going back-and-forth to the hotel. She can try to rest at First Aid. Some dark attractions are great for a snooze — Carousel of Progress and Hall of Presidents at MK in particular, and the lines aren’t usually long. If she can walk to board the People Mover it is relaxing, and sometimes they’ll let you stay on a second round. Table Service meals can be expensive but also provide for a good hour+ in the a/c as a break.

Don’t rule out DAS or at least speak to Guest Relations. Just don’t rely on it. Take advantage of 4th FP+ and use it frequently — see some posts on the TPAS Forum about the “refresh” strategy to find what you want. RD stands for Rope Drop which is park opening. That may or may not be possible for her depending on how her early mornings go. But the parks tend to be less crowded earlier in the morning. You might want to check out the Touring Plans website to help make a plan of attack, even if you don’t follow it exactly.

Late July/early August will be hot and humid. Plan well or the weather can sap energy from the healthiest person. Cooling towels or Froggs Togs or similar are good. Stay hydrated. Ice water is free at any counter service location, usually without waiting in line to order. Pop up thunderstorms are common at that time of year — don’t leave the park, just head indoors and wait it out. The crowds may thin some because others left.

ECV rentals at the park are first-come first-served and often run out by mud-morning. Less expensive would be an offsite rental if you will have a car. But she may be better allowing you to push so she can enjoy the sights without draining her mental energy driving in crowds.

Most of all — know that NOBODY can do it all in 1 trip. Set expectations and you’ll have a good time. Maybe make a list of everyone’s “must do” and create a plan to do 2-3 each day. Anything more is bonus.

Enjoy your vacation and make some fabulous memories!
 
I would talk to her about what her goals are. She may just want to go and watch the kids have fun - create a happy memory for the kids. Since she will be in a wheelchair, she may be able to sit and watch and enjoy the atmosphere without over exerting herself. She might want to pick just a handful of rides to do with the kids.
This is very good advice.
Her idea of what she wants to get out of the trip might not be what you think.
Some other things to consider are the ages of the kids, how many kids and whether they are boys or girls. That would help with planning.

My sister (37), sadly has been diagnosed with terminal ovarian cancer. She’s decided (against my many protests) to knock taking her kids to WDW off her bucket list. My other sister and I are going as her caregivers (or rather, one to care for her and one to care for her kids as she’s single).

Here are my biggest concerns:

1. On an average (just running errands, Dr appts, etc), we only get 3-5 good hours out of her a day. I was thinking of asking for a DAS citing her need to lie down to rest frequently and taking her back to first aid to do so. Is that feasible?
This is a quote from the Disney website page about DAS:
“A Guest whose disability is based solely on the necessity to use a wheelchair or scooter does not need DAS.”
There are guests whose needs are totally met by being able to use a mobility device in the lines/attractions. Those people don’t need and would not normally have DAS issued to them.
But, there are people who still have unmet needs even with using an ECV or wheelchair; those guests would need to explain their additional issues/concerns related to waiting in line to be considered for DAS.
No one can tell you whether or not Guest Relations would issue DAS to her. It’s definitely worth discussing.
First Aid is a good option for resting, but since there is only one per park, you may not be close when she needs to rest. She may also find that she suddenly ‘crashes’ and needs to rest ASAP.
Or do we really just need to focus on AM fastpasses, one of us take her back to the hotel to rest and then go back and do evening things?
My suggestion would be to first figure out when she’s at her best and schedule your 3 Fastpasses and the day around her best times.
Some people are best first thing in the morning and then it gets harder as the day goes on. Others are the opposite.
Her better time will probably depend somewhat on where her cancer has spread, her symptoms and medication she’s on. If she’s best in the morning, take advantage of getting there when the park opens (rope drop) or Extra Magic Hours (early opening hours on certain days for guests staying at a WDW resort)
All shows have spots for guests using wheelchairs, ECVs and other mobility devices. It’s helpful to alternate shows with attractions that require a transfer.
2. I’m like 99.9% certain we’ll bring the wheelchair, but there’s also a good possibility that she might like an EVC in the Park. Is it possible to store her wherlchair somewhere while she uses the EVC and then be able to retrieve it before we leave?
You would be able to less e a wheelchair at the park ECV rental area.
I’d strongly consider sticking with the wheelchair for a couple of reasons:
  • Guests using ECVs need to constantly alert; it’s kind of like driving a car in heavy city traffic - if the other cars are driving every which way, stopping suddenly in front of you and crossing your path without warning from the wrong direction. The ECV driver needs to be watching all the time and ready to stop at any time.
  • Even though driving an ECV may not be physically tiring, it is mentally tiring, especially if the person is already tired or is taking pain medication.
  • If she’s being pushed in a wheelchair, she can concentrate on the the sights and seeing her children’s reactions instead of dpending her energy driving.
  • All attractions are wheelchair accessible to the point of boarding (exceptions - Swiss Family Robinson Treehouse, Tomorrowland Transit Authority and Tom Sawyer’s Island where guests need to be ambulatory. Some attractions have lines that are not ECV accessible; for those she would need to transfer to an attraction wheelchair. Each transfer takes some energy, do the less transfers, the better.
  • Some attractions have wheelchair accessible ride cars, but almost none of them are ECV accessible. Using a wheelchair avoids another transfer for those attractions.
    How does security work with a wheelchair? Do we need to remove her bag from the chair or can they look at it while still attached?
ive seen some ECVs where a storage bag is part of the seatback, making it impossible to remove.
If the bag can be removed, you will be asked to remove it from the wheelchair for security check.
Very sorry about your sister's diagnosis. But glad that she will get to take the trip with her children.

Although fastpasses are great and I would definitely use them, I think a huge benefit of the DAS for her would be the return time does not expire like the fastpasses do. So if she were resting at first aid when the return time comes up, you wouldn't have to rush her to get to the ride within a certain time frame like it is with fastpass. I believe they don't expire until the end of the day, so whenever she would be up for it, you could ride. However, as you probably have read, you can only have one return time on the DAS, so until that is used or cancelled, you wouldn't be able to request another one. Also, anyone included on her DAS (you, your sister, and the children) would be able to request a return time without your sister being there. But she does have to be present when you go back to actually get on the ride (and she must ride of course).

I would call the dream organization and express your concerns. Although you were told the genie passes were for children, there may be something else they could work out for you.

Hope you have a great trip! It will be emotional I'm sure, but hopefully not stressful.
The DAS Return Times don’t expire until the park closes for the day (I have read some comments from people saying that they were still able to use one the next day, but I wouldn’t count on it).

I have never heard of adult dream organizations being able to give out the same/similar type of Genie pass that is used for children. It’s worth contacting the organization, but I would consider it a real long shot.
 
Generally DAS is not given for mobility/stamina issues because those needs can be met with a wheelchair. However, you are saying a wheelchair will not meet her needs, because she actually needs some where she can lay down and take a real nap. So I think there is a good chance OP could argue for and receive DAS based on the fact the mobility device doesn't meet her needs. Also, when I first came on this site to inquire about DAS I was focused on my daughter's fatigue, which is her biggest problem in the parks (even with a wheelchair). the more I read other people's posts, the more I realized she had multiple problems that could be alleviated by a DAS that I simply hadn't thought about because I was so focused on her fatigue. Is she receiving chemo or other treatments that would cause side effects that would make waiting in a line difficult? for example if she is immunocompromised waiting in a crowded, enclosed place would not be ideal, or if she is over sensitive to heat/sun she might need to wait somewhere with AC (and yes, I know most lines are shaded and many are indoors, but not all. and there is a big difference between waiting in the shade and waiting somewhere with central air). that sort of thing. Also, its pretty obvious that having a terminal cancer diagnosis causes anxiety and/or depression; I imagine the trauma of having a terminal illness combined with the pressure and stress of knowing this is one of her last chances to make happy memories for her children could in its own way be debilitating. DAS is designed to help with meltdowns, anxiety attacks and the like; I see preventing mom from having to leave a line in tears because she just can't handle the wait as falling under that same umbrella. Anyway, inquire for a DAS, no one on here can say whether or not you will get one. have a back up plan, with fastpasses, a list of must do's, and a touring plan, just in case you get denied. Definitely plan to do some shows and sit down meals where mom can rest a bit and everyone will still have a good time. if you get a DAS, have a "DAS runner"; it can be exhausting to go to the attraction, get the DAS, go to first aid to rest, then go back to the attraction. DAS holder doesn't need to be there to obtain the return time, so have her go to first aid for her rest while one of the caregivers goes to get the return time. most importantly, adjust your expectations; you already know this is not a trip where you will be able to hit every attraction, so don't even try. on my daughters best days (and only if the weather is cooler) we get 3 hours in the morning and 2 hours in the evening. and most days not even that. we take it slow, and enjoy the atmosphere. we stop to play in fountains, pop some bubbles, bang on a drum, look at a pretty flower display. we have a few must do items, if we get those done its a success. sometimes we get extra, sometimes not. but don't go into it thinking you need to do it all or you will add so much pressure that it will ruin the trip. best of luck to you all
 
I would talk to her about what her goals are. She may just want to go and watch the kids have fun - create a happy memory for the kids. Since she will be in a wheelchair, she may be able to sit and watch and enjoy the atmosphere without over exerting herself. She might want to pick just a handful of rides to do with the kids.

Thanks for the advice. When I asked her what she wanted to do at WDW she replied, “meet Cinderella,” so I might make sure we do that as soon as we first arrive at MK and then try to get FP for rides for the kids later in the morning after she goes to rest. I’m thinking my goal will be to have brunch or lunch before she neees to break, and then the “stay at park” adult can take the kids to hit as much as possible before she returns.

Realistically I see her arriving at park open (assuming 9 am for no EMH), leaving around 11 am (but probably able to have a meal before she goes), returning at 6 pm and leaving by 8. But... I really want her to see a nighttime show in MK, so maybe the 1st day at MK have a late start with a break. IME, Cinderella isn’t a long wait, and I’d be willing to blow a FP on it so she can be sure to meet her, if needed.
 
Very sorry about your sister's diagnosis. But glad that she will get to take the trip with her children.

Although fastpasses are great and I would definitely use them, I think a huge benefit of the DAS for her would be the return time does not expire like the fastpasses do. So if she were resting at first aid when the return time comes up, you wouldn't have to rush her to get to the ride within a certain time frame like it is with fastpass. I believe they don't expire until the end of the day, so whenever she would be up for it, you could ride. However, as you probably have read, you can only have one return time on the DAS, so until that is used or cancelled, you wouldn't be able to request another one. Also, anyone included on her DAS (you, your sister, and the children) would be able to request a return time without your sister being there. But she does have to be present when you go back to actually get on the ride (and she must ride of course).

I would call the dream organization and express your concerns. Although you were told the genie passes were for children, there may be something else they could work out for you.

Hope you have a great trip! It will be emotional I'm sure, but hopefully not stressful.
there is no holliday but I am not sure if kids are in school yet when the kids go back to school it does get quieter



I would ask her what would make this trip magical for her and then fouse on this

Most kids are still out of school then. I have asked what she wants, but she’s a WDW newb, so she wants to do everything (which obvs isn’t possible), but I still want it to be magical for her.
 
another thing I was thinking was that she may have more energy than you think because she wants to do it.

This for sure. I’m sure she’ll suck it up as long as she can to see her kids happy, but that’s not necessarily a good thing.

If you’ve heard of the “spoon theory” of disability, consider she only has a max of 5 spoons a day. She can save up spoons (to a degree) and borrow on tomorrow’s spoons, but eventually she’ll run out of spoons. When she runs out of spoons the trip is essentially done for her. The goal is to make sure she still has enough spoons to enjoy this trip.
 
This for sure. I’m sure she’ll suck it up as long as she can to see her kids happy, but that’s not necessarily a good thing.

If you’ve heard of the “spoon theory” of disability, consider she only has a max of 5 spoons a day. She can save up spoons (to a degree) and borrow on tomorrow’s spoons, but eventually she’ll run out of spoons. When she runs out of spoons the trip is essentially done for her. The goal is to make sure she still has enough spoons to enjoy this trip.

We are *very* well acquainted with Spoon Theory at my house.

That's why I'm going to encourage you to get a wheelchair for her. An ECV will "cost" her energy because not only will she have the physical act of driving it, but she will have to be hyper-aware; sadly, so many people are on their phones, or taking selfies, or posting to Instagram these days that they often (seriously) walk right into the path of scooters, wheelchair, strollers - basically any mobility device that is below eye level. There are long time members here (myself included) who have experienced people walking *into* our scooters (and then blaming us because they weren't paying attention) I feel like she would be able to conserve her energy far better by being a passenger and not a pilot; there is an actual physical and emotional toll from piloting a personal mobility device at WDW, and that's a spoon (or three) she doesn't need to spend.

Since it sounds like you will be staying offsite, First Aid in each Park will become your friend. Download the My Disney Experience App for your phone, and find the location in each Park *before* you need it. You will be able to get paper maps at the entrance to each Park. I have found when planning a trip, just going over the map and finding where things are can be helpful; it can help prevent needless criss-crossing of the Park. And with kids, knowing where the closest bathroom is, and where the nearest quick service (counter service/walk up/fast food style) is will be important. (Also, every QS at WDW gives out free ice water - you just have to wait in line)

Additionally, ask for Park Hoppers if they aren't automatically provided by the Dream people - that way you could go to one Park in the morning and return to a different Park later in the day.

I know this sounds corny, but my first trip to WDW was in July of 1972. It was my 12th birthday, and the Magic Kingdom had only been open for a few months! It was *quite* a different place then - EPCOT was still on the drawing board, and Hollywood Studios and Animal Kingdom hadn't even been dreamed up yet! Even though we had only a day and half at the Magic Kingdom (this is back when if you bought your tickets after 3pm, you got the next day "free" LOL) we still didn't get to do every single thing. But it didn't matter, because there was a parade to watch, and hot dogs to eat, and an amazing candy store on Main Street where you could stand on the sidewalk and watch them make the candy inside, and it smelled like heaven! What I really remember from that first trip is how beautiful and magical and amazing everything was. And how even the most mundane things - like eating lunch - were somehow wonderful because we sat at Casey's Corner and looked at Cinderella Castle! We were at Disney World! Kids often don't remember a lot of the details about their first trip to WDW because it's just so overwhelming! (some adults feel the same way LOL)

My point is this (and yes, I do have one) - There is *so* much to see and do at each Park, so worry less about a hard and fast "to do" list, and focus on keeping your sister as comfortable as possible. If she is OK with one of you taking the kids to go do things while she rests, that allows the children to take fuller advantage of their time, and ride some rides, and maybe see a few shows. But there are so many quintessentially "Disney" things to do that don't involve lines, Fastpasses and queues - like having a Dole Whip in Adventureland, and riding the Monorail, and walking through Cinderella Castle. She may only feel like going around and seeing everything - and that's OK, because we know that just being there has a cost for her that none of us can really comprehend.

And as a previous poster in this thread mentioned - I know it's hard to believe, but there is a very real phenomenon that many of us have seen first hand with terminal patients at WDW: They get a "boost" or an "energy burst" that is unexplainable by any logic, and they somehow have a trip that exceeds everyone's expectation. It's been seen in both children and adults, and there's no real explanation for it. It's just... magic. I'm not guaranteeing you that it will happen, just making you aware that it is a known "side-effect" for some terminal patients.

My heart and prayers will be with you and your family.
 
Most kids are still out of school then. I have asked what she wants, but she’s a WDW newb, so she wants to do everything (which obvs isn’t possible), but I still want it to be magical for her.
I would start to talk to her about the rides if you know she does not like to do roller coaster then you do not have to talk about them but maybe show her some ride through video on YouTube so that she can get an idea if the rides. Look into Things that can help to save here energy like if a ride she can stay in her wheelchair then do it show are normal easy to walk up and see with out much wait and they are inside. If you are staying on sight going back to your room migh take over an hour and off site will take longer so be prepared for this.
 
Always ask for a DAS. The worst they will do will say no. It seems like she may be too ill to ride rides, but you can use them for meet and greets that have a fastpass. I would either plan fast passes for meet and greets or plan them for rides the kids would want to do.

One thing that hasn't been mentioned was getting the Photopass. This trip is about memories for her children. It will take one thing off your plate - you'd get tons of Disney photos. Plus the meet and greets and ride photos.

Overall, just manage expectations. Realize that she may just be able to meet a couple of characters and have some pictures taken and that's it. Research heat management because July/August is brutally hot. Bring an umbrella or some sort of shade for her - MK in particular has few shady areas. The heat may be the biggest factor for her.

I hope you have a wonderful trip.
 
I have some experience with this.

Last July, my sister and I took our terminally ill aunt to WDW who also had stage 4 cancer (she passed in February). We also stayed offsite. There were no kids on our trip, but my aunt had even less stamina then your sister at this point.

We had a fantastic time and I am so glad we took that trip. We ended up pushing her in the wheelchair everywhere instead of using an ECV - that way she could focus on all the sights without having to stress about driving around and not hitting people.

We were able to secure a DAS for her. It doesn’t hurt to ask. We used it in combination with FP+. We just had her rest in a shady spot while we waited for return times or pushed her around a gift shop. We took long breaks at indoor counter and table service restaurants.

We did not do mornings in the park. Each day she slept in, had a leisurely breakfast and enjoyed the pool. Then she would take a nap. We left for the parks around 3 each day and stayed until closing. This was easier to handle as we did not have to go back and forth and we were there when it was cooler. With DAS and FP+ we got a lot done in that time, but not anywhere close to everything. We took it slow and picked a few highlights at each park.
 
My unsolicited advice:
skip mornings. go in the later afternoon/evening with her. let the kids go early, run amuck doing the things mom can't or doesn't want to do. then join them after lunch or for dinner before traipsing about in the (marginally) cooler evening. hang back after fireworks to let the crowds disperse.

focus on ONE, maybe two of the parks( MK being the usual obvious choice for newbies) how many days are you there? plan a down day.. or hit up the water parks where she can hang around in a shady spot watching the kids having fun.

skip the ECV.. that takes a LOT of mental concentration and is more exhausting than physical exertion in some respects.

have her write up her bucket list in order of importance. go through it at your own pace. she should seriously consider adding "have a Dole Whip" on her bucket list. its not a trip to WDW without that for me.

take frequent mini breaks by just heading inside to shop.
 
I'm so sorry about your sister. I'm glad she is able to take this trip with them and I'm sure it will be a memory her kids will treasure. Summer will be very hot but it actually has seemed less crowded to me than other times. That said, it's Disney so it's always kind of crowded.

Plan meals in the AC, do a few character meals, she'll be able to sit and rest and the kids will get to see characters so they'll be happy. Manage her expectations and those of the kids, they won't be able to do everything, no one can. Make your fastpasses for each park, but be conscious of the location so you aren't criss crossing and using even more energy just getting somewhere.

The heat will probably be difficult for her, I know it wore me out even when I was healthy. Night is a great time to do the parks, they are open late and it's less crowded and the sun is not beating down on you. I agree with a PP who said maybe let her sleep in and go to the pool and go to the parks later in the day. ECV's take a lot of mental concentration, if she's not up for it I'd stick with the wheelchair. It really depends on her stamina. Take a lot of pictures, you can also get memory maker but candid photos would be good too.

Definitely try for the DAS, the worst they can say is no, but to me her issue is not strictly mobility related and she might get approved. The most important thing about this trip is spending time with family, I'd find out her top 3 things to do in each park and be sure to do those but the rest is icing on the cake.

My most important rule for Disney is, if we're not having fun we don't stay. If it's hot and everyone is miserable, some pool time might be in order or at least a break of some sort.
 
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