MIL (young grandmother) w/end stage lung cancer

[ms_flo]

I just posted about this on the camping board, but I thought the people here might also be able to give me helpful tips. I'm really not sure what to ask though. I've tried searching this board, but I haven't been able to find threads regarding cancer patients at WDW. I want to take my MIL to Ft. Wilderness. I don't know what sorts of accommodations they have, if any. My MIL uses oxygen every day at her home, but she can still go out without it on good days. At this point she has not had to use a wheelchair, but she has not been in a situation that requires as much walking as WDW does. I honestly do not know whether or not she would be willing to use one. She might rather stay in the campground than be pushed around in the parks.

Any tips/suggestions you could share would be appreciated.
If you want more background on the situation, here's my post from the camping board:

Hello everyone. The wonderful people on DISboards were very helpful to me when I planned our last trip to WDW. I felt like I couldn't say "THANK YOU" enough back then.
Now I need your help more than ever! I'll try to keep this short & sweet...

After our DD's trip to WDW in '04, we talked to all the grandparents about going with us on our next trip. We never started making serious plans though, because my MIL (& dear friend) was diagnosed with lung cancer. After almost 2 years of dealing with it, the cancer has spread to her liver. Two weeks before Christmas her doctor told her it was time to stop all treatments. We did not know if she would make it through the holidays, but she has. She is in increasing pain but good spirits. About a week ago she told me that she would still like to go on the WDW trip--even if she was "only able to sit in the room with the kids." If she is up to it, I want to take her to WDW and make sure she doesn't just sit in a room.

I want to take her to FW. My MIL has always loved to camp. If we stay at FW, we can still have a Disney vacation like we talked about--even if she doesn't feel like going to the parks. Unfortunately she no longer has her tt, and I don't think she would be comfortable in our pop-up. (I'm also not sure if it would survive such a long trip.) Plus, if we go, it needs to be soon. We have been warned that her health could deteriorate quickly. So...

I would like to rent a comfortable camper for us. I think we could get there as early as 1/24, but 1/28 or 1/29 is more likely. I'd like to stay for at least 5 days maybe up to 10. It will depend on how she feels. I've played with some dates on the computer reservation system. It looks like getting anything other than a partial hook-up site could be difficult. So far I haven't seen any rentals that I thought would work on the "tent sites", and I really don't have time to do any more searching. Do any of you have a rental camper that will fit on the tent sites, or do you know of a place that does? Does anyone know if FW has handicap accessible full hook-up sites available? I couldn't get any info about accessible sites from the reservation page. (If I'm lucky, FW keeps its accessible full hook-up sites separate from the computer reservation system, and there is still one available. I feel sure we could make this work if we could get a full hook-up site.)

If we're able to do this, there will be 5 of us (with a very slight possibility of only 3). If we can do things cheaply enough, I would also like to bring my SIL & 2 nieces. That would make 8 people. I would be happy to sleep in a tent with the kids, but I need comfortable sleeping quarters for my MIL. She is in enough pain as it is without sleeping on a lumpy mattress. (I am trying to find a body massaging pad for her, but there's just been so little time to look into all of this.)

I would appreciate any information or suggestions you could share.
Thank you in advance for your time & your assistance.
And thank you for "listening".

 

[dclfun]

I'm not sure about the accessible hookups but most of Ft. Wilderness is accessible via paved trails. I rode around with my SD in my power chair extensively last year and didn't find anywhere that I couldn't go. The campers are located close together in loops that also have paved pads as long as she can get into/out of the camper. I would strongly suggest that she have a w/c. There is extensive walking even IN the resort grounds, not just at the parks. To get to/from the restaurants and boat launch is quite a hike. If she absolutely refuses to get one, you could reserve one of the golf carts which have electric chargers. They are popular so be sure to reserve in advance along with your FW ressie.

As for oxygen, her vendor can contact a local vendor in Orlando to have it delivered. They should be able to also rent ( or you can bring along) an alternating pressure mattress. Some people have gotten the eggcrate mattresses at local big-box stores and then either brought them home if space allows or tossed them after the trip. Speaking with her physician about comfort equipment and medical equipment would be a good idea to be sure he writes a prescription. My insurance, for example, covers my alternating pressure mattress.

Hope you have a great trip, and hopefully someone else will also respond.---Kathy

 

[rbork]

FW can be tough to get a full hook up site on short notice, let alone a couple of sites together. It can also be alot of walking itfa cart hasn't been rented.
Perhaps the FW cabins or even Wilderness Lodge might be an option for comfort yet still feel camp like (far stretch but hey?) Is your MIL a canidate for hospice yet? Perhaps they could share some tips with you and what you could expect in a travel/vacation situation. Also they have resources for medical equipment that could aid sleeping etc. Don't delay - go as soon as possible.
Good Luck and Do What's right for you.

I think it's great Mil still wants to go. I too traveled with my mom when she was terminally ill. It makes great memories for both the patient and the family.
When comfortable breathing became troublesome my mom slept pretty propt up/ almost sitting upwright.

 

[ms_flo]

I'm not sure about the accessible hookups but most of Ft. Wilderness is accessible via paved trails. I rode around with my SD in my power chair extensively last year and didn't find anywhere that I couldn't go. The campers are located close together in loops that also have paved pads as long as she can get into/out of the camper. I would strongly suggest that she have a w/c. There is extensive walking even IN the resort grounds, not just at the parks. To get to/from the restaurants and boat launch is quite a hike. If she absolutely refuses to get one, you could reserve one of the golf carts which have electric chargers. They are popular so be sure to reserve in advance along with your FW ressie.

At the campground we usually go to, there aren't many accessible sites so the general public is not allowed to reserve them. I thought if that were true at FW there might still be full hook-up sites available even though none showed up on the website. It sounds like FW's sites are all accessible, so I doubt that's the case. I've been told that I should go ahead and call for reservations & talk to a supervisor. Hopefully they can help me.

I will need to talk to her about a w/c. I just don't know if she'll agree. My MIL still has a moped that my SIL used on their camping trips when she was a teenager, but I don't believe mopeds are allowed at FW. Is that correct? What are the rates for the golf carts? Can you bring your own? Are there rentals available outside WDW?

As for oxygen, her vendor can contact a local vendor in Orlando to have it delivered. They should be able to also rent ( or you can bring along) an alternating pressure mattress. Some people have gotten the eggcrate mattresses at local big-box stores and then either brought them home if space allows or tossed them after the trip. Speaking with her physician about comfort equipment and medical equipment would be a good idea to be sure he writes a prescription. My insurance, for example, covers my alternating pressure mattress.

Hope you have a great trip, and hopefully someone else will also respond.---Kathy

I think she may have an eggcrate mattress. I'll ask her about it. She has slept on a soft-side waterbed for years. She had a lot of trouble sleeping after she came home from the surgery. (They removed have of a lung.) We were able to give her a multi-speed massage unit made for waterbeds. She still uses it. I've never heard of an alternating pressure mattress. Would that help with pain/soreness, or is it primarily for bed sores? (I did a very quick google search.) I will try to get info from her doctor's office, but she does not like to ask questions. (I, on the other hand, ask questions constantly.)
Thanks for the info. I appreciate it.

 

[ms_flo]

FW can be tough to get a full hook up site on short notice, let alone a couple of sites together. It can also be alot of walking itfa cart hasn't been rented.
Perhaps the FW cabins or even Wilderness Lodge might be an option for comfort yet still feel camp like (far stretch but hey?)

From my other thread on the camping board:
She's much more interested in experiencing her grandkids going to WDW than she is in experiencing it for herself. I want to do FW because she loves to camp & be outside. (a few details about that above) Sitting in a hotel room for hours at a time would be hard on her, but just thinking about sitting outside in the warm Florida sunshine brightens her up. If we're at the campground we can take the kids to the park & let her have the camper to herself for hours at a time. Then when we come back for breaks during the day, she can soak up the Disney Magic from the kids. I really don't know how much she would leave the campground--maybe 1 or 2 special things every day or two (Fantasmic, Illuminations, Rainforest Cafe, etc.).

Is your MIL a canidate for hospice yet? Perhaps they could share some tips with you and what you could expect in a travel/vacation situation. Also they have resources for medical equipment that could aid sleeping etc. Don't delay - go as soon as possible.
Good Luck and Do What's right for you.

I don't know about hospice for sure, but from what I've read I believe she is. My MIL is a fiercely self-sufficient person, and she does not like to ask questions. I don't think she is ready to think about hospice. I'm not sure if she will ever be ready for that. She has only recently started letting me take care of things around the house when we visit. She is used to taking care of others. She's still uncomfortable letting others take care of her. Can you give me any guidelines/tips for working with hospice?

I think it's great Mil still wants to go. I too traveled with my mom when she was terminally ill. It makes great memories for both the patient and the family.
When comfortable breathing became troublesome my mom slept pretty propt up/ almost sitting upwright.

I'm glad you were able to have that time with your mom. DH's family isn't very close. They have a hard time talking to one another. I'm dong my best to draw them together & prevent as many regrets as possible without insulting anyone. It gets tricky sometimes.

About sleeping upright... When my MIL first came home from her surgery she had a lot of trouble trying to sleep. I bought one of those stuffed reading pillow-chairs for her. She thought I was making too big a fuss over her (?!), but she told me later that it was a big help. Now she's able to sleep just using an extra pillow. She still keeps the "chair" beside her bed though.
Thanks for all your suggestions.

 

[dclfun]

I've also had two lung surgeries in the past and about 1/2 of my right lung removed ( then a later revision of one of the bronchi). If she has recently had the surgery then it does take awhile for the remaining lung to expand and take over the function somewhat of the removed lung tissue. I was short of breath for quite some time after the surgery but that improved. Of course I didn't have lung cancer which I'm sure makes a big difference in how she feels. The alt pressure mattress isn't just for bedsores but it does provide comfort for someone who can't turn over on their own or is prone to bedsores. It can be rolled up for travel and comes with a small box that pumps the air in/out via two tubes. Hospital beds can also be rented that would keep her upright or able to change position and are easily obtained through Care Medical or one of the other vendors that delivers to/from WDW. I don't know if one would fit in one's own camper but definitely plenty of space in the cabins at FW. I don't know about bringing your own golf cart to FW as they are pretty large and I don't know of anyplace to rent one other than FW itself but perhaps that could be done too if they are out of rentals during your stay. Id' go ahead and rent one though as you could always cancel it. Perhaps someone on the camping board would have an idea of costs or you could call WDW directly to ask. I hope you're able to get everything arranged for this trip and to spend this special time with your MIL.---Kathy

 

[rbork]

OP-
I can see your perspective about being cooped up in the Wilderness Lodge room. A cabin at FW might work in you can't get on a full hook up site? Still able to camp/BBQ/sit outside etc...They are also have handicap access for some.

I don't think my mom ever said I'm ready for hospice either. I think I finally gave in and called because I needed assistance as I was the primary caretaker and a little desperate. I called the hospice society in my local hometown and they answered several questions readily and happily. At that time, the patient had to be certified by MD as having 6 months or less to recieve services. This may have changed??? Funny thing is "I" waited to long and by the time I called for the hospice consult- she passed a day later. BUT hospice still offered ME assistance. Another local DME rental business was useful as they donated equipment for the patient and just ask that you return it when no longer needed. Perhaps these services are in your hometown? Ask around...doc office, lung cancer society or support groups or ca treatment centers???
I do appoligize if this post is too explicit and I realize this info CAN be distressing to hear.
Enjoy your vacation!