Lost, overwhelmed, no idea what I'm doing

[Danserusse]

I was directed here to hopefully get some assistance. I have no idea what accommodations to request.

A quick description. We will be traveling with our 7,14,and 16 year old daughters, my mother and my disabled husband. This is our first, last, only family vacation. Husband has several issues including the fact that he is in un treatable heart failure, surgery is not able o be performed due to an aneurysm. He is in a wheelchair, we will rent one because his is cumbersome to bring with.

he will be wearing a mask to reduce exposure as he is immune suppressed He can not tolerate heat. I would guess he can stand 10 minutes max, we will need to use a walker to transfer to rides I think. stairs are a no go, He has 100% blockages to both legs and has trouble making it to the bathroom. I think we will use adult underwear that day, just in case as he is weak some days (some days are better than others). He takes oxicodone for pain, xanax for anxiety (mostly related to depression over his failing health and loud noises). He is also on various heart medications and diuretics etc...

We will be getting 7 day passes in an effort to slow down and take our time. I have no idea what accommodations to ask for. The man is truly jut very ill, this trip is not for him, it is for our daughters. I am honestly a nervous wreck that the trip will kill him, just being honest. Anyhow, no idea where to start, what to request. I've read the sticky, but everything is so vague as to knowing your personal needs, but how do I anticipate what I might need before I get there for a person who sleeps 12-14 hours per day and is pretty much housebound?

 

[MG3G]

I'm hoping that you will get lots more experienced people chiming in but I thought since there hasn't been anyone yet I would say Hi!

I too am sick but not doing as badly as your husband. I have a neurological disorder. It seems like we would need sort of the same "things" on a vacation though maybe.

So as far as knowing what kinds of accommodations to ask for you need to think about if DH will be able to wait in the lines. We are going to DL not WDW so I know more about how things operate in the land. BUT it seems like most of the lines are now wheelchair accessible at WDW, so if all he needs is to be in the chair you will have no trouble doing that. Disney's own website has really helpful information on which rides he can stay in the chair, which he would need to transfer into a vehicle etc. Then there is a sticky on the main page of Disabilities here which has some great pictures showing the vehicles in case you need to see what they look like to mentally plan getting him in and out.

IF you need "more" then just the wheelchair then you need to think about what that "more" is. The DAS is available to help with things that the wheelchair wouldn't help with, most commonly issues surrounding being unable to wait near other people for anxiety type reasons as far as I can tell. If you are in a wheelchair it doesn't mean you need to go and get a DAS. If you don't NEED a DAS because the wheelchair covers what you need already, then there is no reason at all to worry about what to ask for because you won't have to ask for anything at all!

It seems like you are already doing better then you realize RE planning. You know how to handle is walking with the chair, you know how to handle bladder issues with underpants, for the sun that is going to be an issue of planning the best time of year and wearing a good hat because a lot of the lines are already covered, for germs you have the mask ... what else ARE his daily issues? It doesn't sound like there is much Disney "can" do that you haven't already (or couldn't) take care of.

Some things I did or am planning to do on my trip - I contacted guest services to find out about more specific questions I had to care for my own needs. I made sure I have ALL THE HEALTH INSURANCE - lol. And I am fully planning to sleep in first aid if I need to!

It sounds like taking things slow and just letting your kids have a great trip is an excellent plan, it is what we are planning for our trip too.

 

[perditax]

Hi. I'm sorry for what you're going through. I read this post, thought of replying, then thought better of it. But now I'm back. I know it's frustrating when you ask for advice on doing something on the internet, and then rather than answer people question why you want to do the thing to begin with. I try not to make that kind of post, and yet it's very hard not to here and I suspect it's why you have few replies yet.

Why do you want to put yourself and your family through this? It sounds like it will be miserable for everyone. You yourself say you are worried the trip will *kill him*. You described yourself as lost and overwhelmed. In addition to the other medical reasons you list that this man should not be subjected to these stressors, you say he's on Xanax for anxiety from loud noises. The parks are full of loud noises.

You say the trip isn't for him, and since you describe yourself as lost and overwhelmed, and you fear the trip will kill him, guessing it's not for you either. So if it's for your kids, would it not be better to teach them that it's more important to spend what quality time they can with their father while he's still here than to push for a kind of trip that can wear even healthy people down beyond endurance?

I'm really sorry what you're going through, but I hope you will be kind to yourself and your husband.

I'll try to at least make one helpful suggestion: could he just stay in the resort and relax, and spend quality time there with the kids in the afternoons or evenings?

 

[limabeanmom2003]

Hi there! Many people planning their first trip get very overwhelmed, but add on your unique circumstances and no wonder you are feeling the way you do. Your idea to buy 7 day passes is good. Are you staying at a disney resort? Do you know about booking your fastpasses ahead of time? I would plan to go to the parks early and ride a few rides, then return to your resort to relax and let the kids swim. You can go back to the parks in the late afternoon. Quality is better than quantity,

 

[Danserusse]

I'm hoping that you will get lots more experienced people chiming in but I thought since there hasn't been anyone yet I would say Hi!

I too am sick but not doing as badly as your husband. I have a neurological disorder. It seems like we would need sort of the same "things" on a vacation though maybe.

So as far as knowing what kinds of accommodations to ask for you need to think about if DH will be able to wait in the lines. We are going to DL not WDW so I know more about how things operate in the land. BUT it seems like most of the lines are now wheelchair accessible at WDW, so if all he needs is to be in the chair you will have no trouble doing that. Disney's own website has really helpful information on which rides he can stay in the chair, which he would need to transfer into a vehicle etc. Then there is a sticky on the main page of Disabilities here which has some great pictures showing the vehicles in case you need to see what they look like to mentally plan getting him in and out.

IF you need "more" then just the wheelchair then you need to think about what that "more" is. The DAS is available to help with things that the wheelchair wouldn't help with, most commonly issues surrounding being unable to wait near other people for anxiety type reasons as far as I can tell. If you are in a wheelchair it doesn't mean you need to go and get a DAS. If you don't NEED a DAS because the wheelchair covers what you need already, then there is no reason at all to worry about what to ask for because you won't have to ask for anything at all!

It seems like you are already doing better then you realize RE planning. You know how to handle is walking with the chair, you know how to handle bladder issues with underpants, for the sun that is going to be an issue of planning the best time of year and wearing a good hat because a lot of the lines are already covered, for germs you have the mask ... what else ARE his daily issues? It doesn't sound like there is much Disney "can" do that you haven't already (or couldn't) take care of.

Some things I did or am planning to do on my trip - I contacted guest services to find out about more specific questions I had to care for my own needs. I made sure I have ALL THE HEALTH INSURANCE - lol. And I am fully planning to sleep in first aid if I need to!

It sounds like taking things slow and just letting your kids have a great trip is an excellent plan, it is what we are planning for our trip too.

thank you, I so appreciate the time you took to respond. I worry a little about his anxiety, he does have meds for his anxiety (mostly related to his failing health and "terminal" condition), though he does get panicky when he experiences shortness of breath or a cardiac episode and crowds can add to this, though we are fully aware that we are opting to face the crowds. Honestly, the only issue I am foreseeing is the possibility that if a particular line is very long or noisy I may need to have him wait elsewhere until we get through the line. I guess I am curious if there is a spot near the front of the line where he can wait until we have gone through the line and join us when we get up there.

 

[Danserusse]

Hi. I'm sorry for what you're going through. I read this post, thought of replying, then thought better of it. But now I'm back. I know it's frustrating when you ask for advice on doing something on the internet, and then rather than answer people question why you want to do the thing to begin with. I try not to make that kind of post, and yet it's very hard not to here and I suspect it's why you have few replies yet.

Why do you want to put yourself and your family through this? It sounds like it will be miserable for everyone. You yourself say you are worried the trip will *kill him*. You described yourself as lost and overwhelmed. In addition to the other medical reasons you list that this man should not be subjected to these stressors, you say he's on Xanax for anxiety from loud noises. The parks are full of loud noises.

You say the trip isn't for him, and since you describe yourself as lost and overwhelmed, and you fear the trip will kill him, guessing it's not for you either. So if it's for your kids, would it not be better to teach them that it's more important to spend what quality time they can with their father while he's still here than to push for a kind of trip that can wear even healthy people down beyond endurance?

I'm really sorry what you're going through, but I hope you will be kind to yourself and your husband.

I'll try to at least make one helpful suggestion: could he just stay in the resort and relax, and spend quality time there with the kids in the afternoons or evenings?

I respect your response. I suppose I should not have worded that it wasn't for him so much as to say he is doing it for the children. We had a trip planned for 2012 but Steven went into cardiac arrest on Valentines Day. The trip was cancelled and he promised that when he was feeling better he would take them. Steven knows that he is dying and he wants to go make some memories that the children will cherish and also keep his promise. he has committed to one ride of each of the girls choosing and a meal. We have 11 days in Orlando and I am purchasing 7 day passes specifically to accommodate his only being able to do short trips into the park.

I am worried, it is hectic in the park etc... I have been MK dozens of times, but the girls have not. He insisted that he was not going to see them graduate or get married and that he wanted to keep this promise to them. What can I say to that, I told him he did not have to, I told him it was too much, but it is his wish to fulfill this promise. I know people won't probably understand that, but too him, he wants to keep this promise.

 

[Danserusse]

Hi there! Many people planning their first trip get very overwhelmed, but add on your unique circumstances and no wonder you are feeling the way you do. Your idea to buy 7 day passes is good. Are you staying at a disney resort? Do you know about booking your fastpasses ahead of time? I would plan to go to the parks early and ride a few rides, then return to your resort to relax and let the kids swim. You can go back to the parks in the late afternoon. Quality is better than quantity,

Thank you. We actually have a house off property but we are bringing my mother along so the plan thus far is for Steven to sleep in mornings. The girls and I will head to the park, hopefully each girl can get a pass for what they want to do with Dad and my mom will bring him in to meet up with us after the hottest part of the day has passed. If he isn't feeling well enough on a specific day then he doesn't have to do it. I also secured a V&A on Friday night for he and I to dine together. I don't mind waiting in the lines with the girls, I was just wondering or curious if there was a way for him to wait elsewhere with mom and meet up with us after we get through line.

 

[aaarcher86]

thank you, I so appreciate the time you took to respond. I worry a little about his anxiety, he does have meds for his anxiety (mostly related to his failing health and "terminal" condition), though he does get panicky when he experiences shortness of breath or a cardiac episode and crowds can add to this, though we are fully aware that we are opting to face the crowds. Honestly, the only issue I am foreseeing is the possibility that if a particular line is very long or noisy I may need to have him wait elsewhere until we get through the line. I guess I am curious if there is a spot near the front of the line where he can wait until we have gone through the line and join us when we get up there.

There's no way for someone to join at the end of the line.

If you feel something like that would be helpful, you'll need to visit guest relations and request a DAS. You'll need to explain your husbands needs aside from the wheelchair, and why the DAS would be helpful. The DAS allows you to wait for the ride outside the line, and then enter through the FP line once your wait is over. Since you'll be splitting up, you'll only be able to use it with your husband and his picture will be on it. They don't accept doctors notes, but you could write your own bullet points if you feel it would help you explain. No one here can guarantee they'll issue a DAS.

There's a sticky at the top of the forum that details the DAS. Just read the first page that has all the information. Everyone will get 3 FP+ to schedule in advance. Definitely utilize that, but if you and the kids are using some in the morning you'll have less to use with your husband when he gets to the park.

Most lines are WC accessible, so there's nothing special you need to do there. You may not need the walker if he can transfer from the wheelchair directly to the ride. Use the MDE app on your phone to find the rides with short waits. Most lines are not stationary which will hopefully help your husband from feeling trapped and overwhelmed.

 

[lanejudy]

Welcome to the disABILITIES forum!

I agree with PP who mentioned taking rest breaks mid-day and extending your trip. 7 days is good, you might consider longer if you can swing it. I'd also consider what time of year you plan to go. Summers (when the kids are on school vacation) is VERY hot and humid. If he has trouble in that weather, you might want to consider a cooler time of year. At the very least, plan some ways to keep him cool and hydrated -- there are cooling vests available, carry a water bottle and ask for ice water (free) at counter service locations.

As much as you think it's cumbersome to bring his wheelchair, think about how you'll cope traveling. Are you flying? You can use an airport wheelchair to get him through the airport. Are you driving? How long a trip and how will he do in-and-out of the car at rest areas, restaurants, hotels (if you stop along the way)? Regarding renting, I'd strongly suggest an off-site rental so he has it at all times -- to/from the parks and around the resorts. Daily park rentals must be left at the gate.

Plan your FP+. Plan to take breaks mid-day out of the heat/sun. Can he stay at the resort by himself to rest so you can take the girls back out? If he typically sleeps 12-14 hours per day, that's a lot of resort time. Plan pool time for the girls if they must stay around whenever he's resting -- in addition to swimming there are afternoon activities and evening movies at the resort pools.

... Honestly, the only issue I am foreseeing is the possibility that if a particular line is very long or noisy I may need to have him wait elsewhere until we get through the line. I guess I am curious if there is a spot near the front of the line where he can wait until we have gone through the line and join us when we get up there.

There is no way to have him wait elsewhere and join you at the front of the line. Most queues are mainstreamed, meaning he can use the wheelchair in line. If that is not adequate for him, and he'll have other issues (other than mobility/stamina) in the line, then you may request a DAS at Guest Relations. You'll have to discuss his "needs" related to waiting in a standard queue environment, as opposed to his diagnoses; and other than mobility or stamina. There is more information about the DAS in the thread pinned near the top of this forum titled "WDW - Disability Access Service Card."

Enjoy your vacation!

 

[Danserusse]

There's no way for someone to join at the end of the line.

If you feel something like that would be helpful, you'll need to visit guest relations and request a DAS. You'll need to explain your husbands needs aside from the wheelchair, and why the DAS would be helpful. The DAS allows you to wait for the ride outside the line, and then enter through the FP line once your wait is over. Since you'll be splitting up, you'll only be able to use it with your husband and his picture will be on it. They don't accept doctors notes, but you could write your own bullet points if you feel it would help you explain. No one here can guarantee they'll issue a DAS.
0154
There's a sticky at the top of the forum that details the DAS. Just read the first page that has all the information. Everyone will get 3 FP+ to schedule in advance. Definitely utilize that, but if you and the kids are using some in the morning you'll have less to use with your husband when he gets to the park.

Most lines are WC accessible, so there's nothing special you need to do there. You may not need the walker if he can transfer from the wheelchair directly to the ride. Use the MDE app on your phone to find the rides with short waits. Most lines are not stationary which will hopefully help your husband from feeling trapped and overwhelmed.

Thank you so much for the information. I think I will see how he handles a line and then if we need to go to guest services we always can. Again I don't mind waiting in the line and would never expect to use his card when he's not there (do people actually try this? Number one, scummy, and 2, I'd be afraid the mickey police would come after me!), lol. I really don't see him doing more than 2-3 rides and maybe a show for the day.

 

[SirDuff]

You've received some good information. One other comment - since there will be rides that your DH cannot do due to his condition, I'd try to plan those for the morning (i.e. before he gets there), so that he isn't waiting around for the rest of you to ride. Then, plan the things that he can do for the afternoon/evening when he is there.

 

[SteveMouse]

You didn't indicate what time of year you were planning to travel, but I am a bit concerned for you regarding Spring Break crowds and the heat of summer. Maybe early May would be a good time (I find that, even in June, it can be hot and even at night it doesn't cool down very much).

I also think there is a lot of value to staying on property for you, especially at a hotel/resort that requires minimal transportation (Monorail resort for the MK, BC/YC/BWI/S/D for Epcot/DHS. That would allow the focus of time to be on doing rather than traveling (depending on time of year and available discounts, you might get lucky on a rate, especially @ the Swan or Dolphin).

Just getting to the MK when staying offsite can consume effort- driving to Disney, parking @ the TTC, and then the ferry/monorail, and the same thing in reverse to leave. Having a room onsite might help reduce some of that stress and provide a convenient retreat.

Remember that each park has a first aid station that can provide a quiet space to rest and assist with some basic medical issues.

As to a wheelchair or ECV, does your husband currently use an electric wheelchair? Is he comfortable driving an ECV? Either of these are rentable from offsite vendors for length of stay and would give him more independence and not require someone to push him. Note that many ECVs are collapsable and can fit in the trunk of many cars- electric wheelchairs generally require specialized vehicles or at least a vehicle lift.

 

[Nevada Jen]

First, we have stayed off site with a wheel chair many times. I think it is actually considerably easier. The wheelchair parking is close and we just do do one park a day. I think that is considerably easier than trying to negotiate Disney transportation with a large party and a wheelchair. SO I would not worry at all about that.

Second, don't wait to see if you need the DAS. It is clear to me that you need it. Get it your first day in the park. You all need to be there at the same time to get it. Don't feel guilty about using it. This is exactly what it is for.

Third about him being so ill. When we went on my daughters Wish Trip, one of the days I was super sick. Couldn't keep anything down, had a vision, sound and smell altering/triggered migraine. I wasn't missing a day of her trip and I went to the park and actually have very good memories of walking to the rides and then watching my family go off all happy to ride the ride. I was sick that sitting in the shade counted as an activity. I passed out twice at the park that day. And you know what? I seriously didn't mind! It was very special to see my family enjoying themselves, and I sort of felt like a rock star for sticking it out.

Last thing, I would really consider an ECV. It is difficult to push a wheel chair for that long. I actually suspect the ECV will give him tons of freedom and considerably increase his enjoyment of the vacation.

 

[Danserusse]

You didn't indicate what time of year you were planning to travel, but I am a bit concerned for you regarding Spring Break crowds and the heat of summer. Maybe early May would be a good time (I find that, even in June, it can be hot and even at night it doesn't cool down very much).

I also think there is a lot of value to staying on property for you, especially at a hotel/resort that requires minimal transportation (Monorail resort for the MK, BC/YC/BWI/S/D for Epcot/DHS. That would allow the focus of time to be on doing rather than traveling (depending on time of year and available discounts, you might get lucky on a rate, especially @ the Swan or Dolphin).

Just getting to the MK when staying offsite can consume effort- driving to Disney, parking @ the TTC, and then the ferry/monorail, and the same thing in reverse to leave. Having a room onsite might help reduce some of that stress and provide a convenient retreat.

Remember that each park has a first aid station that can provide a quiet space to rest and assist with some basic medical issues.

As to a wheelchair or ECV, does your husband currently use an electric wheelchair? Is he comfortable driving an ECV? Either of these are rentable from offsite vendors for length of stay and would give him more independence and not require someone to push him. Note that many ECVs are collapsable and can fit in the trunk of many cars- electric wheelchairs generally require specialized vehicles or at least a vehicle lift.

We are coming March 21-April 3. I put a deposit on a private home but I am having difficulty contacting the owner to pay the balance. I went with the private home because we are traveling with husbands 4 pound Yorkie, apparently we are 15 minutes from WDW, and have a private pool. Hubby has both a power wheelchair and regular at home, however, lately I push him more and more so I am thinking we should go that way, or if there is a place inside the park I can store his wheelchair if we need to switch him fro ECV perhaps?

 

[Danserusse]

You've received some good information. One other comment - since there will be rides that your DH cannot do due to his condition, I'd try to plan those for the morning (i.e. before he gets there), so that he isn't waiting around for the rest of you to ride. Then, plan the things that he can do for the afternoon/evening when he is there.

I will certainly be doing this so the girls will get to experience "The Magic!"

 

[Amanda999]

Hi!

I won't repeat PPs - many good comments here - but just wanted to be sure you know that even with a DAS, your husband will still need to wait (in the FastPass line). That is going to be a shorter line than the regular standby line, but for some rides the FP line is remarkably long. BMTRR and Soarin are pretty slow FP lines, e.g. BMTRR isn't air conditioned in parts, and if its hot and humid out can be uncomfortable.

I recommend scheduling DH's FP+ (3 per day, 30 days ahead if you are offsite, for as many days as his park ticket is for) for the special ride(s) each day. You can only book 3 per day, in 1 park.

Then, if he goes to a 2nd park on one day, use the DAS (you go to the ride, get a return time written down - equal to current standby wait time - then come back and wait in the FP line to ride).

We basically just do the 3 FP rides, and eat, and walk around. I guess I recommend just not trying to do a ton of rides - just have the family choose 3 per day, same park, to make it really easy. And schedule a TS meal at that park. Just makes it much easier to not be traveling between parks or resorts for rides or meals.

HTH! Good luck with everything!

 

[SteveMouse]

For onsite ECV rentals: they will usually store any manual chair you have (please be sure it's well-labeled).

ECV rentals are inside each park's gates- note that it's a LONG way from personal vehicle parking at the Magic Kingdom since you take the ferry or monorail across/around the lake.

ECVs are first-come, first served. You may, unfortunately, have some difficulty getting one in the early afternoon, especially the week before Easter.

If you park hop during any day, save your receipt and you can pick up an ECV at the next park- Disney's ECVs can't be used between parks.

There are a number of vendors (See the sticky) that will deliver an ECV to your house for your use- it can be a lot cheaper, but you are responsible for getting the ECV to/from the parks.

 

[kandb]

Since rides seem like they might be hard for him. How about going to a dinner/show (hoop de doo) or maybe a nice dinner at Ohana's and then go to the beach area to see the fireworks. If you see the fireworks at one of the hotels (grand Floridian or Polynesian) you won't encounter crowds like you will in the parks and then a lot of crowds leaving. I think parking/getting into the parks will be a challenge so maybe something special outside of the parks might be nice. Hope you all have a magical trip.

 

[Dashzap]

Divide and conquer sounds like a good plan.

Your husband can skip the parks some days. Maybe book some character meals at the resort hotels as something he can enjoy with the kids without the stress of the park.

Is your mom up to taking the kids to the parks some days without you? You'll need to rest, too.