Suggestions for enjoying park with hubby who is battling terminal cancer

Hi. My hubby has been given a poor prognosis and just in the last 2 weeks I've seen him go downhill. Two days ago he said to me that he doesn't want to sit in his recliner in our house just waiting to die, and that he didn't want to go out like this. My husband is a fighter and will continue to battle until the end. We remembered we have DVC points that need used and found a resort for 3 nights and used Southwest resort points and a giftcard to get flights to Orlando. I question his decision but he said he can go to room and rest if needed but wants our 5 kids to have one more family vacation together as a family. Our oldest is a Marine stationed on the west coast and since he came home a week ago he won't be able to join us. I won't ask if you think this is crazy, because it probably is, but I'm going to attempt anything he asks in his final months. I'm wondering if any of you have experience with a situation like this and if so could share some pointers/suggestions/ideas. I am going to look in to renting a scooter but his feet and ankles are so swollen I'd like to find a scooter that is comfortable and possibly will hold feet up a little. Thank you for your suggestions.

I have no advice to offer, but would like to send you well wishes and kudos for doing this. I hope you'll be able to make some cherished memories. God speed!

Sending good thoughts your way as you plan this special trip.

Moving you to the disABILITIES board where they can assist you with your scooter questions.

((hugs)) I know you will pull this off! I'd suggest that he does the parks in small doses and that you focus on shows and his favorite attractions. And take lots and lots and lots of photos. Expect that the travel days will likely be exhausting and don't plan anything too taxing for arrival day - maybe a nap after arrival and a nice meal that evening with the whole family? The next few days, spend maybe 2-3 hours in the park at a time (depending on how he is feeling), and then go back to the room for a nap while your children hang out in the park. It sounds like your kids are grown so it will also be good together time for them.

You could do something like 9-11 - park, lunch either in the park or back in the DVC room (if this is more restful for him), nap, 3-5 park, dinner, then back to DVC room. If he has energy, the family can hang out with him for a little bit before he goes to bed.

Sounds like he really wants an escape to your family's happy place - how awesome you are for doing this for him! You're going to make some incredible magical memories together.

My heart goes out to you. Its good that your dh wants to make memories with your family.

You would probably take your cues to him about how much he can do , how much he wants to rest etc.

I would look also into purchasing the Memory Maker so lots of pictures can be taken.

Another gal and I were suppose to meet up with one of the breast cancer gals from from the community board thread once but she said the chemo was making her so tired she just had to rest for several hours mid day in the room.

As the other posters have said, schedule time so your kids can do themselves while you and your dh may need to rest. Also look into what resort activities you could possibly do also.

I use a wheelchair so I cant comment on the scooter but perhaps look at some of the pictures that are online and show your dh.

Have a wonderful trip.

Ask your hubby's doctor if they will give him an immune booster shot.

I would let him take the lead and not push it too much. Just do whatever to make memories. I agree that Memory Maker will be worth it. He may not look his best but your kids and you will cherish those photos for years to come.

I would also think about your budget and see if there is any big thing you two have always wanted to do but never did. VIP tour, special dinner, a fireworks cruise, or whatever. If you can make it work then go ahead and let yourself give into that want. Same goes for the smaller things. Don't sweats the nos and try to say yes as much as you can so the magic is there.

Sounds like you have older kids, are their grand kids or anyone else that will be joining as well?

I am sorry about your husband DX I hope you have a great trip and your children can make some great memories

the only thing I can offer is to make sure you take breaks so he dose not get over whelmed and tired

You can ask at Guest Relations about the Guest Assistance Pass to see if he qualifies. It helps with the lines. A scooter sounds like a good idea. Three nights is a short trip. With a chronic illness, it seems to help to have a longer trip because then the time spent resting in the room doesn't feel like as much time is being wasted, especially if he needs a day to recover from the travel. There are first aid stations at all the parks and they are very nice. Quick service is better than ADRs because with quick service, you can eat when he feels like he needs food or needs some time sitting and you don't have to wait for the reservation. There are some nice quick services like Columbia House. If he feels he needs to rest, it's best to rent a taxi or uber and get him quickly to the room than to wait for a bus, especially if he deteriorates while waiting. Good luck and best wishes.

Sunnywho said:

You can ask at Guest Relations about the Guest Assistance Pass to see if he qualifies. It helps with the lines. A scooter sounds like a good idea. Three nights is a short trip. With a chronic illness, it seems to help to have a longer trip because then the time spent resting in the room doesn't feel like as much time is being wasted, especially if he needs a day to recover from the travel. There are first aid stations at all the parks and they are very nice. Quick service is better than ADRs because with quick service, you can eat when he feels like he needs food or needs some time sitting and you don't have to wait for the reservation. There are some nice quick services like Columbia House. If he feels he needs to rest, it's best to rent a taxi or uber and get him quickly to the room than to wait for a bus, especially if he deteriorates while waiting. Good luck and best wishes.

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Just for clarification it is no longer a Guest Assistance Pass but is a DAS card.

Prayers for your entire family.

Get an EVC for him, take things slow. Make it as stress-free as possible for everyone by not trying to do everything. Just enjoy each other, some of your family's favorite rides, and the time together.

Will driving the ECV be hard for him - use up too much of his small reserves of energy? I think a wheelchair might work out better for you all if you have enough adults/older kids to push.

I hope you have a wonderful trip, full of good memories in the making. (((hugs)))

Wheelchair leg rests would help his feet more. They would be elevated. I would rent a wheelchair. He could just relax. Using Disney transportation with a scooter can be challenging for first time users. Wheelchairs have better access on some rides than what scooters do. An example is the Great Movie Ride where the wheelchair goes on the ride, but a scooter is not allowed. It sounds like you have enough people to alternate the pushing of the wheelchair. Travel wheelchairs are portable and lightweight.

I would consult the doctors about this trip. Make sure he gets whatever extra meds he may need to pull this off.

Disney shows provide resting times. My mom would nap here and there in a show. Also, first aid has cots where he could take a rest, if needed. This might be easier than going back and forth to the parks multiple times. Do more mini meals at the parks and take more breaks that way.

Disney crowds can make it difficult for scooters. Will his reactions be good enough to avoid a collision with someone who darts out in front of him?

If you insist on a scooter you may want to practice at home with the free ones at the store. If you have a local zoo you may want to rent a scooter there and give it a try there first for a day. You'll be able to get an idea of his endurance. You will have to charge an outside rental scooter each day. Also, you need to get it in and out of the room. It might be better for someone else to do this part. Same with getting a scooter on and off Disney transportation; let someone else maneuver it.

Getting a DAS will help if he qualifies.

Hope you have a wonderful trip.

@Bete makes some good points - however, in the event that he may want to be more "in control" of his mobility, an ECV would be the better choice.

If you all decide to go with a wheelchair, bring along a pair of cheap bike gloves (Wal-Mart is fine) to help prevent blisters on the "pushers" hands. Someone will have to push him: there are just too many hills, curb cuts, ramps, etc. all over WDW.

Remember also to plan for airports, since you are flying. If you will need assistance at the Airport, let the airline know in advance. It can be quite a hike at some airports from gate to gate (if you have layovers) or up and down concourses. And when you arrive at MCO, it will be additional time standing in line downstairs at Disney's Magical Express, so you may want to have a wheelchair for that.

If he can't make the bus stairs for DME, they do have DME buses with lifts. Call ahead and let DME know that you will need a lift bus, and then remind them again when you arrive.

As others have said - let him lead the way; if he wants to take things slow, and go back to the Resort, it's OK; you are still at Disney World! Remember that there are tons of things that are still fun, but not as tiring, like the water taxis at Disney Springs, and from Epcot to Hollywood Studios. Ride the Monorail, and stop to visit at every hotel! Go on a fireworks cruise one night out in the Seven Seas Lagoon, and watch the fireworks over the lake as the soundtrack is piped into the boat. Have a family portrait made at Disney Springs - either by the Photo Pass photographers, or by the caricature artists! Be sure to get a Memory Maker package, and take a million pictures with every WDW photographer you see. You'll all be glad you did later, because it makes sure that everyone is in the picture, every time.

(((hugs))) We will keep you and your entire family in our prayers.

When my friend was terminal and stopped chemo she decided to order an adjustable bed. The medical supply also brought a bunch of other equipment that it didn't seem like she needed yet. Well, one day she could still do the stairs, and then suddenly the next she couldn't. One day she couldn't stand up fast enough to get to the bathroom after it was no problem earlier in the day. My advice would be in addition to any accessible room features to order any medical supplies or devices for the room. He may be fine in the parks one day and then be too worn out to get out bed for basic needs the next, in which case you'll want to be prepared.

Would you be able to find semi-quiet places in the park for DH to rest?

Going back to your room involves travel. Any kind of travel creates stress. It is possible that getting there (the room) might outweigh the advantages of being there.

Don't forget that caregiving will not be reduced just because you are at Disney. You may want to recite a mantra saying that it was a successful Disney day even if caregiving took three quarters of it. Or a mantra saying "We're doing it all for you (DH or Dad or Gramps)."

The DAS has far fewer functionalities, actually just one, compared with the discontinued Guest Assistance Card. All the DAS does is permit you to sit for about the same length of time, hopefully more relaxed, where it might be airy, shaded, brighter, quieter compared with inching along in line, stall and crawl, creep and (ECV) beep, grope and mope, following the same person and having the same person follow you.

DisneyOma said:

Will driving the ECV be hard for him - use up too much of his small reserves of energy? I think a wheelchair might work out better for you all if you have enough adults/older kids to push.

I hope you have a wonderful trip, full of good memories in the making. (((hugs)))

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I agree.
Since the OP can see him going downhill in just the past 2 weeks, a wheelchair is a more realistic option. He may want to be in control, but driving an ECV takes a lot of energy, concentration and alertness, which will shorten his ability to be up and around. If he has one and doesn't feel up to using it, you are stuck, since he needs to drive it.
Also, with a wheelchair, it is possible to get ones with elevating footrests.

As was pointed out by another poster, there are attractions where a guest can remain in a wheelchair, but would need to transfer from an ECV to a wheelchair. That's 2 transfers each time - one to go on the attraction and one to get off.

He can go to First Aid in any park to lie down. It may not be the most restful sleep because it's a cot, but if he's worn out, it will help him recharge. You can also go to one one the nearby resorts if you are MK or Epcot and rest in the lobby. Those resorts have large lobbies with comfortable chairs. It would require a trip, but may be less effort than going back to your own resort.

It may help to think of energy as a bank account. The account gets replenished by sleeping and resting. Everything that's done all day has a cost in energy. If you do too much, just like a bank account, you get overdrawn. If that happens, some of the replenished energy goes to making up the overdraw.
A healthy person gets replenished much easier and takes less energy to do things. He might be at the point where just getting up and moving around uses most of the day's energy and he needs to replenish often during the day.
He may also use so much energy that he can't replenish as fast as he is using and would have to just take a few days to rest. Keep in mind that even short days may take a lot of energy just with the coming and going. He may want to go every day, but may need to only go a few days with rest days between.
On our last trip with my mom, she was not considered terminal yet, and was still doing much of her own housework. But, one day at Epcot in a wheelchair was what she was able to manage.

SMD said:

When my friend was terminal and stopped chemo she decided to order an adjustable bed. The medical supply also brought a bunch of other equipment that it didn't seem like she needed yet. Well, one day she could still do the stairs, and then suddenly the next she couldn't. One day she couldn't stand up fast enough to get to the bathroom after it was no problem earlier in the day. My advice would be in addition to any accessible room features to order any medical supplies or devices for the room. He may be fine in the parks one day and then be too worn out to get out bed for basic needs the next, in which case you'll want to be prepared.

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You can get medical equipment delivered to your room if you need it. I would suggest CARE because they are a full service medical equipment company.

Also, keep in mind that things can go downhill very quickly.
We get many people on this board who plan a final trip that they don't actually end up being able to take. The POSSIBILITY of a trip might be as important to him at this point as an actual trip. Although it might be disappointing, often the possibility of the trip and the planning is the gift, not the trip itself.

Prayers for a safe journey, whether or not it leads to WDW.