terminally ill adult trip (TPN advice needed!)

[gellar]

I've posted a few times prior about the special trip my kids and I will be taking with my mom and my terminally ill dad. As time progresses, his cancer is taking more and more of his normal daily functions; the latest being his ability to eat. He is now using TPN and also had surgery to insert a drain in his stomach to keep him from vomiting so often. (He was doing so at an alarming rate, even without eating and only having the TPN. No chemo or other treatments either.)
He's currently in the hospital recovering from that surgery. Our trip is just 25 days away and I worry about how he'll do. All of his doctors strongly support him going on this trip and have said their number one priority is to help him manage his symptoms well enough to go. He is adamant about taking his grand babies on their first trip to Disney World. It's all he talks about! We are running out of time to make special memories with him, and I'm a wreck trying to plan this trip. My questions today revolve around TPN. Any tips for traveling with TPN? Will our resort provide an additional fridge for his medical supplies? They'll likely take up most if not all of the space, and we'd like to have some room for drinks/snacks. Also, he won't be using his dining credits now. If he attends meals at a buffet/family style, he'll be charged regardless, right? Will we run into any issues with him not eating at other TS restaurants?

Any other advice for traveling with a fragile adult is most welcome. We are planning to take things slow. We expect for him to join us for a short amount of time in the morning at best, or relax in the resort at worst. Someone recommended a gopro camera so we can not only capture these special memories on film, but so the kids can show grandpa what they rode/saw in his absence. We have a 10 night stay booked, with 7 day park hoppers. That means we have rest days sprinkled in, and can hop dad over to any place he desires when he feels up to it. He wants an ECV, but I'm pressing for a wheelchair. He doesn't wan't us to have to push him, but I don't want him wasting energy being vigilant on the ECV. Does anyone know if it's a problem to swap for one or the other when renting from one of the ECV vendors? Maybe that way he can try the ECV, but swap it if it's too taxing? We'll be making note of the first aid stations so he can rest, if needed. I know I need to call our resort (POR) to discuss our needs, but I wanted to check in here first in case anyone has advice on something I haven't considered.

Thanks in advance for any advice you may have! I would love to hear about any similar experiences your family has. Planning this trip has been so bittersweet. I knew from the beginning it was likely this would be the last big thing we'd do with dad, but in just a few short months likely has turned into will be. I'm expecting to be on quite the emotional roller coaster this trip. Hearing your special memories will help me going in.

 

[gap2368]

I would call disney and ask them about another fridge or if you can bring one ( they have plug in one that are like coolers so not a fridge it self that you can buy at walmart or something like that) I am pretty sure that he will be charged a meal at a TS since it is the exsprince at some of them ( like CRT )at QS you should be fine if he just sits with you all

about the ECV if he rides in the middle of the group of you all you can give him a little buffer for other guess so that way you can control little people cutting him off,

 

[SueM in MN]

It's late, so I can't write much right now.

I agree - ask about a second refrigerator. If you can't get one or one doesn't fit in your room, you can get a styrofoam cooler very cheaply at any grocery store or place like Target, Walmart. Ice is free, so you can keep your drinks cold in that and just replenish the ice as needed.

For his meal credits - they will likely charge meal credits for character meals, family style meals and buffets. I'm not sure how it works for Dining Plan, but paying cash, the server/manager has some discretion to not charge if the person doesn't eat. The character meals, I would expect not to have any exceptions made (they may, but expect they won't and be pleasantly surprised if they waive it).
For other TS, each person order, so someone else could use his dining credits.

I would still push very heavily for a wheelchair - maybe make a fuss over who has the honor of pushing him instead of a chore.
We took the last trip with my mom in April 2014. At that point, she was not considered terminal. She was not cured, but was kind of in a holding pattern. She was eating well, not in pain and not having any of the type issues your dad is having. In fact, she was still well enough that she was doing most of her own cooking and household tasks. (She actually died in January 2015).
Despite that, being pushed around in a wheelchair really tired her out. We did one day at Epcot with her (not a hard day or a long day), a few hours on another day at Downtown Disney, a few hours shopping on another day and several times out to eat.
I would expect your dad might be totally exhausted after a short day at the park. I'm a nurse and patients I had when I did home care who were at his point really spent most of their day between bed and recliner. I'm sure that because he really wants to make it a good trip for everyone, he is probably overestimating his stamina.
You will need to watch him for signs of fatigue because he is likely to push himself (maybe not even consciously) because he wants to keep being 'Dad'.

If he insists on an ECV, you should have no trouble trading it for a wheelchair. People do that if they find the ECV is just to hard for them, they don't like it or it makes them too nervous.

 

[gellar]

I do expect him to push himself and will be watching closely for signs of fatigue. I'll also be watching him closely BEFORE the trip to be sure he's not covering up issues that would make mom and I want to call off the trip.
He told me yesterday, "I'm going to get stronger and we're going to have a FUN trip." So I know he's thinking he's going to ruin the fun. I can't get it through to him that this trip is for HIM. We want him to be comfortable and have as much fun as he can. I WANT to push him in a wheelchair. He's stubborn, but hopefully I can be more stubborn on this topic!

 

[BagOLaughs]

I don't have any advice to give, i'm sorry. I just wanted to drop in and say if your trip does go ahead I hope its the most magical trip for you all.

 

[2tinkerbell]

I don't have any advise, but, came into say that I hope your trip is wonderful and that you and your family are able to create fantastic memories.

Secondly, Sue that is the best post I have ever read - so full of empathy and giving the best advise. Thank you!

 

[ember303]

I do not have any advice other than to cherish each moment, which I know you will. I am so sorry you are going through this!

 

[smidgy]

{{{ hugs }}}

 

[dalmatian7]

hugs

 

[chainkid]

Sorry to hear about your dad. If it were me and I have had several illness over the years where I required an ECV, I would always chose the ECV. Alot depends on his comfort level with driving one. If he is a confident driver then an ECV IMO is superior to being pushed in a wheelchair. If your mom gets one also then the two can ride together and exit together quickly should he suddenly need to get back to room. I developed pneumonia suddenly when at Disney and found I had to get an ECV to be able to do anything . My husband could have pushed me but having the freedom to let him continue on with my family made me feel much less a burden to them. I went back and rested until they returned. If he has lost control of his motor skills and this can happen then it would be stressful for him but otherwise they are very easy to use and fairly quick when you just have to get back to room.

 

[Disneygal27]

I'm sorry to hear about your dad, but I hope you all can make some magic happen on your trip. I can't offer too much help with the fridge or dining plan questions, but we took my grandpa on a birthday trip years ago when he was very frail and the biggest thing for us was rest breaks and lots of hydrating/snacks (he found out he loved dole whips on our trip). Honestly for us, some of the best times were people watching and talking, and one thing we did was had a nightly roundup to compare who got the best picture and souvenir from the day (even at the resort, he could take pics of the BW from the room). Just doing little things like that helped him feel involved when he couldnt go all day. Another thing my family discovered was taking snacks or even meals back and having family dinner in the room, we have done that for a few years since my dad started having mobility issues. That way everyone is still involved in the magic, and its a great chance to share the pics/videos from earlier in the day so your dad can still feel like part of the magic at mealtime.

As far as ECV vs wheelchair, I'm not sure what rental options there are but my dad just got a personal powerchair that is a great compromise. It should give him access to more rides than an ECV without needing to transfer, and i believe there is also a way to put it in neutral and push it like a manual (we havent tried that ourselves yet, my mom has arthritis and I'm away at school). But maybe that would be something that would give him more freedom, is easier to control since its all on the armrest, and you could trade back and forth with the manual vs power aspect. That way everyone is happy and you guys can have the best possible vacation together

 

[SueM in MN]

I'm sorry to hear about your dad, but I hope you all can make some magic happen on your trip. I can't offer too much help with the fridge or dining plan questions, but we took my grandpa on a birthday trip years ago when he was very frail and the biggest thing for us was rest breaks and lots of hydrating/snacks (he found out he loved dole whips on our trip). Honestly for us, some of the best times were people watching and talking, and one thing we did was had a nightly roundup to compare who got the best picture and souvenir from the day (even at the resort, he could take pics of the BW from the room). Just doing little things like that helped him feel involved when he couldnt go all day. Another thing my family discovered was taking snacks or even meals back and having family dinner in the room, we have done that for a few years since my dad started having mobility issues. That way everyone is still involved in the magic, and its a great chance to share the pics/videos from earlier in the day so your dad can still feel like part of the magic at mealtime.

As far as ECV vs wheelchair, I'm not sure what rental options there are but my dad just got a personal powerchair that is a great compromise. It should give him access to more rides than an ECV without needing to transfer, and i believe there is also a way to put it in neutral and push it like a manual (we havent tried that ourselves yet, my mom has arthritis and I'm away at school).

Power wheelchairs are very heavy and putting it into neutral (it's usually called freewheel) is meant for pushing it empty for short distances. My daughter's power wheelchair weighs almost 300 pounds without her it in.
Power wheelchairs in freewheel are very hard to push, hard to steer and can be hard to stop since it's a lot of weight just rolling.
I've occasionally done it for my daughter's dance class and it's quite a workout just pushing it for a few minutes. So, I think you will find that pushing it will be much different than you are imagining.

But maybe that would be something that would give him more freedom, is easier to control since its all on the armrest, and you could trade back and forth with the manual vs power aspect. That way everyone is happy and you guys can have the best possible vacation together

Many people find there is a longer learning curve to use a power wheelchair because everything is in the single joystick - speed, turning/direction and forward/reverse. Pushing the joystick straight ahead makes it go forward, but pushing forward a bit less than straight will cause it yo turn. That can be difficult for some people to control at first, especially since the farther the joystick is pushed, the faster it goes.

 

[ToddyLu]

We had this trip in 2004 with my FIL...all of us went, MIL, their children, spouses and grandchildren. We had some nice dinners out and then expected only about 2 hours a day with him on our trip. He was able to ride, HM, IASW, PotC and then the shows in MK. He bought all kinds of souvenirs on this trip in complete happiness. We had the other time during the day to do what we wanted and to have time apart. We had cell phones which made it easy. He had an ECV and my DH and BIL walked on either side of his ECV while in the parks. I have a special photo of the two of them walking beside him down Hollywood Blvd. They are both good size, burly guys with sun glasses on...and NO SMILES. They look just like his secret service. Where he went they went and loved it. When he was up and out we were all in attendance and did what he could do. We have so many fun memories from that trip. My BIL called my DH one time from the buses. We were already in one of the parks. DH answered the phone and only said "Got it!" then smiled...seems my BIL told my DH "Nemo has left the reef, I repeat, Nemo has left the reef", meaning they were exiting the bus and to met them at the gate to assume his position on the right side of the ECV. Nemo he was called after that...

So I would get both the WC and the ECV. What does it matter and you will have them if needed. This trip is about comfort and memories. You go and do what you can. You enjoy the FP+ with him and make sure everyone rides together. When he is tired, one of you help your Mom and the others can stay in the park for fun and then met up later for fireworks, a meal, whatever. It is going to be about Dad this trip and you guys will figure it out.

Make sure that you understand the TPN, his catheter, port or whatever he is using. Make sure you understand how to use the gastric tube. Take a suitcase with his extra supplies that are strictly for that and carry it on the plane if flying. Use the basket on the ECV so he will know he is helping everyone and have the kids make a cute sign for it with stickers, etc. When he isn't up to going out and the kids want to see grandpa, rent a movie from the gift shop and pop popcorn and sit on the beds and watch a movie. They also show movies down by the pool. If the kids want to help with his care in some way, let them. Maybe they can care his backpack onto the bus or remind him to use sanitary soap. Maybe they can go into the restroom to make sure he is OK if they are old enough, standing outside the stall or watching the ECV--stuff like that. Let them put lotion on his feet at night, you know little things to help your Mom. It is hard to say what his stamina will be and you will just have to wing it a bit. I can assure you that whatever happens will be OK. One thing Disney is good at is giving you hundreds of choices. It won't matter if something goes amiss because it isn't about cramming it in this trip it is about being together. While your Mom sounds like his primary caregiver if he needs to leave the table then offer to do what you can. Just having the help so she can relax a bit. If a couple of adults know how to flush the catheter or about his machine that gives her a big break. Stay with him so she can go out with the kids for a bit, stuff like that.

I have no doubt that you have already worked most of this out...it is what it is and the thing everyone will have to remember is that this trip will be just a different pace. A magical trip to remember.

 

[ToddyLu]

With my FIL I really had to stress the ECV with my MIL. In WDW there are small inclines up and down that on a normal trip you don't even notice. You will get tired and blisters even if pushing for a short time, even when taking turns. The purpose of the ECV for us was giving him the sense of independence and not being "a burden"...if he wanted to look at a patch of flowers he could go there, if he wanted to go into a store for a minute he could--at his own pace, and look at what he wanted to enjoy the small moments meant just for him. He was very happy with the ECV.

I remember in those days in England at EPCOT there was a huge table of Royal Doulton china int he middle of the store. Pop went in on his scooter and some how lost his sense of distance. DH was right there and stuck his foot out a couple of seconds before Pop rammed the table. I think his shoe and the wheel of the ECV smoked for a second until DH could reach over and turn the ECV off...we still laugh about it and of course got him right out of there. If we had spilled the china it would not have ended the trip, we would have tried to make amends, paid for what we could and had an even more horrible, funnier memory. On our next trip it was no longer there... Be sure you know where your handicapped viewing spots are for Illuminations, Wishes, etc.

 

[Wendydagny]

My daughter has been TPN dependent for most of her life, and has been to Disney several times. To answer your specific questions:

1) They will deliver a second fridge to your room if needed, no matter where you are staying. Just call and add it to your reservation and remind them at check in. We have had this happen at all levels of resort. In fact, at All Star Movies they delivered one WITH the giant box of TPN that was shipped to the hotel, without us even asking

2) As far as dining credits, the only way out of them is to remove him from the reservation right now, and then add him back on like 48 hrs before arrival. Basically it's because of the rules of the "package" and dining plan. You would need to purchase his tickets elsewhere and I am thinking BEFORE you cancel so he does not lose his FP+, but that COULD mess that up. I have never cancelled, just added her at the last minute. The other option is that other adults in your party can use his dining credits-- this worked out great for us because we travel with a large party a lot of the time.

3) We always go into buffets expecting that she will be charged, but she never is. We have been to every buffet except Chef Mickey's. She has also never been charged at CRT-- they have refunded my pre pay amount every single time.

4) You didn't ask this but please make sure the team supplies you with extra hydration fluid in case he has excess gastric losses or just gets overheated. TPN dependent patients get dehydrated very easily. It's better to have more supplies than you actually need.

If you have any questions just ask!

 

[SueM in MN]

Also to keep in mind -
Driving an ECV takes a lot of alertness and can make some people more fatigued - yes, they are not getting tired walking, but they need to stay constantly alert to what is going on around them and able to react quickly; people popping out in front of them, places that are too narrow or tight, curbs, etc.
That can be very tiring and make them so busy watching what they are doing that they miss what is going on.
Keep in mind too that if he is on pain medication, that could make it unsafe to drive because it alters people's alertness and ability to react.
I've seen many people at WDW who are really not safe to drive an ECV, but are, maybe because people are afraid to push a wheelchair.
(including a guy who repeatedly slammed his elbow into a guardrail on a line because he could not figure out how tight the turn was and a woman who took out a rack of stuffed animal - luckily not china).
His doctors may be the best judges of whether or not using an ECV is a good idea for him. If he shouldn't be driving a car, he should not be driving an ECV.
That said, if he chooses to use an ECV, I really like the idea of a 'security detail'. It's cute, special and could keep someone out of trouble.

A couple other things -
Extra medical supplies can be stored at First Aid. That would be a good place to store some extra hydration supplies as Wendydagney mentioned. And, if he is getting dehydrated, you would want to take care of it in the park because it can take up to 1.5 hours to get to the front of the park, out to buses, wait for bus and get back to the room. First Aid has very nice private treatment rooms you could use.

Even if you haven't gotten Photopass before (the name has changed, but I can't think of the current name right now), you might want to get it this trip. You can also download your own photos to the Photopass account.
Whether you get or don't get it, the Photopass CMs will take pictures with your camera for you.

Take lots of pictures and stop to smell the roses (literally and figuratively). My FIL passed away suddenly, so we didn't have a trip that was his planned 'final trip'. He loved the rose garden at Epcot; I treasure pictures we have of him in front of the roses and I can't look at the roses without thinking of him.
My mom loved the Mexico pavilion - everything about it, including the Mariachi band - since he had lived in Mexico for about 5 years. We took pictures of the band and I got her a CD of them.
On one of our trips, I made her and my daughter matching WDW Memory books with pictures we took on the trip. I know that my mom looked at that and listened to her Mariachi band send WDW music CDs in her last weeks and that they brought her a lot of good memories and comfort.
So, make as many memories as you can, take lots of pictures and "Kwaherini" (go well) to take a farewell message from Animal Kingdom's Safari.

 

[hollypoast]

I haven't read all responses so hopefully this isn't repetitive. I assume if your father is tetminal that he has signed on to hospice services. Your local hospice should be subcontracting with a hospice in Orlando so they can provide services (nursing visits, CNA cares, meds, etc.) in case of a need or change in your father's condition. It can provide a nice "safety net" and give you peace of mind. I can provide more info if you need it.

Good luck and I hope you have a great time.