WDW buses realistic expectations with a wheelchair?

[disney david]

I've requested a ground floor accessible room with roll-in shower, she cannot do stairs. She has pretty advanced dementia. Can walk, but again, no stairs or stepping over tub. It will be the first time using a wc, but she definitely can't walk a week, or even a day of Disney!! 2 of us work in healthcare, but none of us have ever traveled with WC, so no very little about ramps, lifts, etc!?!

I think being close to transportation will be best for her/us...With OPR being closed, we don't plan to eat at the resort often. We can swim in the closest "quiet pool" and take our MNSSHP morning to go to the themed pool.

I worry that making too many special requests for the room will cause issues, and we won't get what we need. I am really wanting our rooms to be close, so we can all help, and her room on ground floor, hopefully close to transportation.

With a group of 14, are we going to have trouble all getting on a bus together. I read somewhere that they allow 5 on the bus with the WC?

Only 5 guest plus guest in wheelchair through the back door the rest will have to wait in regular line. So pick the five you don't want to be separated if their a huge line to get on the bus.

 

[lanejudy]

I've requested a ground floor accessible room with roll-in shower, she cannot do stairs. She has pretty advanced dementia. Can walk, but again, no stairs or stepping over tub. It will be the first time using a wc, but she definitely can't walk a week, or even a day of Disney!! 2 of us work in healthcare, but none of us have ever traveled with WC, so no very little about ramps, lifts, etc!?!

I think being close to transportation will be best for her/us...With OPR being closed, we don't plan to eat at the resort often. We can swim in the closest "quiet pool" and take our MNSSHP morning to go to the themed pool.

I worry that making too many special requests for the room will cause issues, and we won't get what we need. I am really wanting our rooms to be close, so we can all help, and her room on ground floor, hopefully close to transportation.

With a group of 14, are we going to have trouble all getting on a bus together. I read somewhere that they allow 5 on the bus with the WC?

As for transportation, one thing I've found at CBR is that with each "island" having it's own bus stop you are generally fairly close to transportation. You aren't concerned about meals at the resort or closeness to the main pool, so you can keep your requests to ground floor and together. Just keep in mind that it may not be possible to get 4 rooms together or even in the same building or island.

You won't be able to take 14 people through the back door with the wheelchair. Some will need to be in the regular line. I suggest you make plans for a meeting place in case you don't all get on the same bus. This may be important if your rooms are spread out as well and you get on at different bus stops. I honestly wouldn't try to keep 14 people together all day every day anyway -- plan for check-in points periodically like for a TS meal at lunch or dinner.

Be prepared for the individual with dementia to completely blow all your carefully made plans. We never knew from one day to the next what my dad could handle, and that was at home in a much more controlled environment. I can't imagine how challenging it might have been to be at busy, crowded, noisy parks with him in the later stages. She may need shorter times in the park than others in your group. I'd plan a rotation with a specific adult to be caregiver each day; that way everyone will get a chance to spend time having fun if she needs to return to the room.

Enjoy your vacation and I hope you make some fabulous memories!

 

[Tmom5]

As for transportation, one thing I've found at CBR is that with each "island" having it's own bus stop you are generally fairly close to transportation. You aren't concerned about meals at the resort or closeness to the main pool, so you can keep your requests to ground floor and together. Just keep in mind that it may not be possible to get 4 rooms together or even in the same building or island.

You won't be able to take 14 people through the back door with the wheelchair. Some will need to be in the regular line. I suggest you make plans for a meeting place in case you don't all get on the same bus. This may be important if your rooms are spread out as well and you get on at different bus stops. I honestly wouldn't try to keep 14 people together all day every day anyway -- plan for check-in points periodically like for a TS meal at lunch or dinner.

Be prepared for the individual with dementia to completely blow all your carefully made plans. We never knew from one day to the next what my dad could handle, and that was at home in a much more controlled environment. I can't imagine how challenging it might have been to be at busy, crowded, noisy parks with him in the later stages. She may need shorter times in the park than others in your group. I'd plan a rotation with a specific adult to be caregiver each day; that way everyone will get a chance to spend time having fun if she needs to return to the room.

Enjoy your vacation and I hope you make some fabulous memories!

Thank you so much for your input. We are hoping to take an extra caregiver with the expectation that she will not last long, and that way my dad can still enjoy the grandkids - but if that doesn't workout, rotating is a good idea. I just really want this to be special for my dad. I know his goal is to give us one last vacation as a whole family, but I also know that she will have bad moments or even bad days. I am hoping for moments that we can all hold on to. I have booked mostly lunches for our ADRs, knowing that she does better earlier in the day. I am trying to plan ahead with contingencies in place...

 

[gap2368]

lanejudy gave you some really good idea, for the person in your group with dementia a few other things to think about if you think she just need a little time in a quiet area to rest each park has a first aid were you can go and lie down in a quiet area. not sure when you are going, but make sure she and every one else is well hydrated, and feed. make shore she keeps cool a big hat to keep the sun of her a fan and maybe a cool towel on the back of her nick every now and then. ( I know this are more then likely things you do any ways but with the excitement of Disney it is easy to over look) So it might be good idea to have some one in charge of making sure she drinks something ever 30- 60 minutes to make sure she has sunscreen on and replayed often, things like this.

I really hope you have a great trip with a lot of memories to last a life time, and when plans get changed and things get interrupted those are often the time we remember the most, with stories that will be told for years to come.

 

[Mrsjvb]

Thanks a lot @OneLittleSpark. Really helpful to know. Doesn't help with picking my resort though. ::sigh:: Now I have to put AKL on the list. Choices, choices.

AKL is our preferred resort. if you are staying at Jambo, that is the first one of the 2 stops so you will rarely have to worry about getting on. Kidani is the DVC building but while there will be many strollers, there were rarely any one else in a WC or ECV

the drivers do ask you on the way back which building you want to get off at.so they know to prevent anyone else from getting on while he sets it up to get you off. only once in a while will you get Impatient Dad with Jumbo Stroller who starts entering the bus from the rear only to be told he must get off and enter through the front AFTER you are off. if you are lucky, the swearing and dirty looks will not be directed at you.

AKL is EXTREMELY easy to get around in on a chair/ECV and the trip between the two buildings is only about 10-15 minutes through a nicely shaded walkway. you can get up close and personal with the enclosures too.

 

[mb187143]

AKL is our preferred resort. if you are staying at Jambo, that is the first one of the 2 stops so you will rarely have to worry about getting on. Kidani is the DVC building but while there will be many strollers, there were rarely any one else in a WC or ECV

the drivers do ask you on the way back which building you want to get off at.so they know to prevent anyone else from getting on while he sets it up to get you off. only once in a while will you get Impatient Dad with Jumbo Stroller who starts entering the bus from the rear only to be told he must get off and enter through the front AFTER you are off. if you are lucky, the swearing and dirty looks will not be directed at you.

AKL is EXTREMELY easy to get around in on a chair/ECV and the trip between the two buildings is only about 10-15 minutes through a nicely shaded walkway. you can get up close and personal with the enclosures too.

We stay at AKL often, and going to the parks the buses stop at Kidani first and then Jambo house, except the Disney Springs bus. We were just there in early May and this was as true then as ever. There was one time where a scooter at Jambo could not board because both spots were already taken by guests staying at Kidani, and the driver advised the family that another DHS bus would be called. No one tried to board through the back door of any bus we were getting on, but that can happen anywhere.

 

[Kaytie]

AKL is our preferred resort. if you are staying at Jambo, that is the first one of the 2 stops so you will rarely have to worry about getting on. Kidani is the DVC building but while there will be many strollers, there were rarely any one else in a WC or ECV

Are you sure? As far as I know, and nothing different has been indicated on the Transportation Forum, all the park buses start at Kidani, then head for Jambo. Disney Springs buses travel the reverse route - so guests can bus from Jambo to Kidani.

 

[mamabunny]

@Tmom5 - I was my Mom's primary caregiver during her final years. I hope some of my experiences can help you have a better trip.

I can't stress enough to keep her hydrated - UTIs are common in ALZ/Dementia patients, and can wreak havoc under the most controlled circumstances.

If you (and any caregivers) have a bit of time, I fully recommend taking some time to go to the Message Boards at alz.org. There you will find a compassionate and experienced community of loved ones and caregivers who will become an invaluable resource to you as her condition progresses.

My mom had stroke-related Dementia, which presents with very similar symptoms to Alzheimers, and is often treated in a very similar fashion. I found those Message Boards to be a true lifeline more than once during our 5 years of caregiving in our home.

We took Mom back to WDW one last time, early on in her diagnosis. Here are my tips:

- I cannot stress this enough: prior to travel you need to have certain documentation in place. If this hasn't been done already, you need to make it a priority. The documentation that we NEVER left the house without was:
- Durable Power of Attorney
- Medical Power of Attorney
- Advanced Directives for Health Care
- State ID/Driver's License
- Medicare/Medicaid card (+ any "third party" insurance card(s)
- her "one sheet" that I kept updated (this is one sheet of paper, laminated, that had all of her medical info condensed, including her diagnosis, her current meds + doseages, her doctors contact info, and then helpful information (example: Don't shout her name at her because it makes her cry, do call her by her middle name, etc.)
If she should have a medical issue while you are traveling, you may potentially need any/all of those documents. Don't leave home without them.

- Hydrate her (and everyone else in your party) like crazy. Yep, you have more bathroom issues, but WDW can cause even the most healthy among us to be dehydrated - you don't realize how much you can sweat out in a day there! Even sitting all day on my ECV, I still need to hydrate more than at home.

- If she has a medication schedule, try to stick to it as closely as possible. Stay close to home meal times if possible as well. If you can't keep her meal schedule, try to stop for a snack. Routine is very important to Alzheimers/Dementia patients. Keep her meds on schedule is even more important. Bring along at least 3 days extra medication (just in case) and if you fly, don't pack her meds - carry them with you in your purse, or her tote bag.

- If she has a comfort item, be sure to bring it. And bring a backup comfort item if she has one. My Mom's originally was her purse, but later became her blue zip-up sweatshirt hoody. Even if she didn't wear it, she liked to carry it with her. (her backup was a lap quilt she had made prior to the onset of her disease process) I kept both of them with us at all times when she had to travel, and I brought along 2 large two-gallon ziplock bags to store them in to help keep them clean.

Her Dementia (stroke-related) could often cause "catastrophic reactions" to things that we took for common. One night, she became afraid to toilet.
I will spare you the details, but it was horrifying. Not just the logistics of the clean-up (which still haunt me to this day) but just to see someone so afraid to go to the bathroom.

Luckily, we recognized the catastrophic reaction for what it was, so we could deal with it appropriately. Catastrophic reactions can occur at any time, but we noticed that the stress of travel could increase the chances for one, as well as the duration and severity. Sticking to routines, and keeping familiar items on hand can help.

- If you don't already, you will soon travel with a tote bag full of her care items. This may be anything from her "comforts" to toileting supplies, wipes, water bottles, folding cup, tissues, a trash bag, etc. If you rent a wheelchair for her, you can hang a standard backpack off the back on the handles to keep everything handy.

Whenever traveling, we would set up "bathroom kits" that I would create in a gallon zip-lock bag. It would have a fresh pair of briefs, a pair of nitrile* gloves, and a small supply of wipes in a sandwich size zip-lock bag. We would also include a fresh, clean damp washcloth folded in a separate ziplock bag. Because Mom sometimes got emotional during toileting (side effect of her strokes) I always popped in another sandwich bag with a few tissues folded up. In two separate 2-gallon zip-lock bags I would put one pair each of the soft knit pants she preferred to wear i case we needed a wardrobe change. As the day progressed, I would keep/consolidate any "extras" that we didn't use, and place soiled briefs, wipes, etc. into a ziplock to dispose of. Soiled washclothes went back into a ziplock bag for laundry. . By packing everything "flat" in ziploc bags and squishing all the air out, it makes it super easy at Security/Bag check as well; they can see all the contents of every bag, and so won't have to go rooting around through everything.

*we only carry nitrile gloves so we don't accidentally expose someone with a Latex allergy to a trigger.

- If she is prone to wandering, I'm sure you have already thought about a lanyard with her name + a caregiver name and cell phone number, but as we both know, those can be removed. Pinning a name tag to her front might work, but if she has a bad moment, and removes it, then it does no good either. Same thing with "safety bracelets" (used for kiddos and Sr's alike); a determined person will just take it off. Some folks will use a Sharpie marker, and write contact info directly on the skin - works for kids, but fragile senior skin might not welcome that. In our case, I simply wrote the information on a 3 x 5 index card, folded it in half, and safety-pinned it to the *back* of her shirt or dress, typically at about the level of where her bra crossed her back. She couldn't reach it to remove it, and it was visible enough that if she needed help, someone would see it.

- If you are flying, remember that airports can be noisy, busy, and scary under the best of circumstances. Some Alzheimers patients do OK with that, but others can be stressed out by the loud noises (think jet engines backing away from the terminal, the beeping of the carts, etc.) and the stress of TSA checkpoints, so be prepared.

- Most airports have a fairly long walk from the curb to the gate, and from the gate to baggage claim/Disney's Magical Express, so you may want to rent or borrow a wheelchair from home for the entire trip if you are flying. Medical equipment (wheelchairs) flies for free, no additional charge, and you would be able to wheel her all the way down to the airplane door. The chair would be gate-checked and returned to you upon landing.

- If you drive, make sure that she is seated in the middle of the seat with someone on either side, or that any door she is next to is "child locked" so that she can't open it while the car is in motion. The first time my Mom tried to open a car door at 65 MPH I was shocked and stunned - and I stopped on the shoulder, moved her to the back seat and engaged the child safety locks. I had nightmares for years after that. It happens, and sometimes those cognitive "lapses" can be triggered at the most unexpected moments.

- We hung a Christmas bell on the interior Resort room door handle that would make noise if she tried to leave during the night.

- Small, familiar things are important - bring her favorite hand lotion, try to replicate her bedtime/morning routines from home as closely as possible. The more comfortable and relaxed she is, the better the trip will be for everyone.

Like others here, I have walked this path with my Mom, and I know how difficult this is. Don't try to do everything - instead focus on doing what she wants to, and to making memories that you can re-visit in the future when she can no longer travel with you.

My Mom famously never smiled in pictures - except when we were at WDW! My favorite photo of her, ever, was taken on Main Street in the Magic Kingdom, and she is laughing and smiling. We had just made "the turn", and she saw the Castle, and her face lit up. Every time we go to MK, I stop on that spot, and blow her a kiss. We always eat lunch at The Plaza, because it was her favorite, and we have to ride Jungle Cruise (with a Dole Whip after!) for the same reason. She's always with us on those trips, in our hearts and memories.

Don't focus on the future... focus on having the best time you can now.

I wish for you the most magical, loving trip you can have.

 

[Tmom5]

@Tmom5 - I was my Mom's primary caregiver during her final years. I hope some of my experiences can help you have a better trip.

I can't stress enough to keep her hydrated - UTIs are common in ALZ/Dementia patients, and can wreak havoc under the most controlled circumstances.

If you (and any caregivers) have a bit of time, I fully recommend taking some time to go to the Message Boards at alz.org. There you will find a compassionate and experienced community of loved ones and caregivers who will become an invaluable resource to you as her condition progresses.

My mom had stroke-related Dementia, which presents with very similar symptoms to Alzheimers, and is often treated in a very similar fashion. I found those Message Boards to be a true lifeline more than once during our 5 years of caregiving in our home.

We took Mom back to WDW one last time, early on in her diagnosis. Here are my tips:

- I cannot stress this enough: prior to travel you need to have certain documentation in place. If this hasn't been done already, you need to make it a priority. The documentation that we NEVER left the house without was:
- Durable Power of Attorney
- Medical Power of Attorney
- Advanced Directives for Health Care
- State ID/Driver's License
- Medicare/Medicaid card (+ any "third party" insurance card(s)
- her "one sheet" that I kept updated (this is one sheet of paper, laminated, that had all of her medical info condensed, including her diagnosis, her current meds + doseages, her doctors contact info, and then helpful information (example: Don't shout her name at her because it makes her cry, do call her by her middle name, etc.)
If she should have a medical issue while you are traveling, you may potentially need any/all of those documents. Don't leave home without them.

- Hydrate her (and everyone else in your party) like crazy. Yep, you have more bathroom issues, but WDW can cause even the most healthy among us to be dehydrated - you don't realize how much you can sweat out in a day there! Even sitting all day on my ECV, I still need to hydrate more than at home.

- If she has a medication schedule, try to stick to it as closely as possible. Stay close to home meal times if possible as well. If you can't keep her meal schedule, try to stop for a snack. Routine is very important to Alzheimers/Dementia patients. Keep her meds on schedule is even more important. Bring along at least 3 days extra medication (just in case) and if you fly, don't pack her meds - carry them with you in your purse, or her tote bag.

- If she has a comfort item, be sure to bring it. And bring a backup comfort item if she has one. My Mom's originally was her purse, but later became her blue zip-up sweatshirt hoody. Even if she didn't wear it, she liked to carry it with her. (her backup was a lap quilt she had made prior to the onset of her disease process) I kept both of them with us at all times when she had to travel, and I brought along 2 large two-gallon ziplock bags to store them in to help keep them clean.

Her Dementia (stroke-related) could often cause "catastrophic reactions" to things that we took for common. One night, she became afraid to toilet.
I will spare you the details, but it was horrifying. Not just the logistics of the clean-up (which still haunt me to this day) but just to see someone so afraid to go to the bathroom.

Luckily, we recognized the catastrophic reaction for what it was, so we could deal with it appropriately. Catastrophic reactions can occur at any time, but we noticed that the stress of travel could increase the chances for one, as well as the duration and severity. Sticking to routines, and keeping familiar items on hand can help.

- If you don't already, you will soon travel with a tote bag full of her care items. This may be anything from her "comforts" to toileting supplies, wipes, water bottles, folding cup, tissues, a trash bag, etc. If you rent a wheelchair for her, you can hang a standard backpack off the back on the handles to keep everything handy.

Whenever traveling, we would set up "bathroom kits" that I would create in a gallon zip-lock bag. It would have a fresh pair of briefs, a pair of nitrile* gloves, and a small supply of wipes in a sandwich size zip-lock bag. We would also include a fresh, clean damp washcloth folded in a separate ziplock bag. Because Mom sometimes got emotional during toileting (side effect of her strokes) I always popped in another sandwich bag with a few tissues folded up. In two separate 2-gallon zip-lock bags I would put one pair each of the soft knit pants she preferred to wear i case we needed a wardrobe change. As the day progressed, I would keep/consolidate any "extras" that we didn't use, and place soiled briefs, wipes, etc. into a ziplock to dispose of. Soiled washclothes went back into a ziplock bag for laundry. . By packing everything "flat" in ziploc bags and squishing all the air out, it makes it super easy at Security/Bag check as well; they can see all the contents of every bag, and so won't have to go rooting around through everything.

*we only carry nitrile gloves so we don't accidentally expose someone with a Latex allergy to a trigger.

- If she is prone to wandering, I'm sure you have already thought about a lanyard with her name + a caregiver name and cell phone number, but as we both know, those can be removed. Pinning a name tag to her front might work, but if she has a bad moment, and removes it, then it does no good either. Same thing with "safety bracelets" (used for kiddos and Sr's alike); a determined person will just take it off. Some folks will use a Sharpie marker, and write contact info directly on the skin - works for kids, but fragile senior skin might not welcome that. In our case, I simply wrote the information on a 3 x 5 index card, folded it in half, and safety-pinned it to the *back* of her shirt or dress, typically at about the level of where her bra crossed her back. She couldn't reach it to remove it, and it was visible enough that if she needed help, someone would see it.

- If you are flying, remember that airports can be noisy, busy, and scary under the best of circumstances. Some Alzheimers patients do OK with that, but others can be stressed out by the loud noises (think jet engines backing away from the terminal, the beeping of the carts, etc.) and the stress of TSA checkpoints, so be prepared.

- Most airports have a fairly long walk from the curb to the gate, and from the gate to baggage claim/Disney's Magical Express, so you may want to rent or borrow a wheelchair from home for the entire trip if you are flying. Medical equipment (wheelchairs) flies for free, no additional charge, and you would be able to wheel her all the way down to the airplane door. The chair would be gate-checked and returned to you upon landing.

- If you drive, make sure that she is seated in the middle of the seat with someone on either side, or that any door she is next to is "child locked" so that she can't open it while the car is in motion. The first time my Mom tried to open a car door at 65 MPH I was shocked and stunned - and I stopped on the shoulder, moved her to the back seat and engaged the child safety locks. I had nightmares for years after that. It happens, and sometimes those cognitive "lapses" can be triggered at the most unexpected moments.

- We hung a Christmas bell on the interior Resort room door handle that would make noise if she tried to leave during the night.

- Small, familiar things are important - bring her favorite hand lotion, try to replicate her bedtime/morning routines from home as closely as possible. The more comfortable and relaxed she is, the better the trip will be for everyone.

Like others here, I have walked this path with my Mom, and I know how difficult this is. Don't try to do everything - instead focus on doing what she wants to, and to making memories that you can re-visit in the future when she can no longer travel with you.

My Mom famously never smiled in pictures - except when we were at WDW! My favorite photo of her, ever, was taken on Main Street in the Magic Kingdom, and she is laughing and smiling. We had just made "the turn", and she saw the Castle, and her face lit up. Every time we go to MK, I stop on that spot, and blow her a kiss. We always eat lunch at The Plaza, because it was her favorite, and we have to ride Jungle Cruise (with a Dole Whip after!) for the same reason. She's always with us on those trips, in our hearts and memories.

Don't focus on the future... focus on having the best time you can now.

I wish for you the most magical, loving trip you can have.

Your post made me cry. Thank you so much! We have beautiful memories of our last big family trip to Disney. I know this one won't be the same, but I am looking forward to the little moments. You definitely mentioned some things I hadn't thought of yet, added to my planning notebook! I really appreciate the suggestions and the sharing. It is a horrible disease and I'm sorry you had to experience it, too.

 

[tobikaye]

At AKL now, Kidani first, then Jambo except for Springs.

We have driven most places, except MK. There was a CM at the buses at Jambi that radioed ahead to let them know to leave one ECV spot for us. On the return, there were 2 EVCs ahead when we got to the bus stop. I sent everyone else and waited with my sister. We had the best driver, she controlled the EVC on and off the bus. My sister just had to sit and enjoy the ride.

When we stopped at Kidani, they had to load a wheelchair and some guests tried to get on from the back, she made them get off. She also moved some guests staying on to Jambo from the other Wheelchair spot to load one.