I had the great joy of caring for my Mom for the last years of her life. She had stroke-related dementia, and we were still able to travel together; it just took a bit of extra planning, as you no doubt already know!
I know it seems like there is a LOT of information here - Many of these tips may not apply to your family's situation, but hopefully some are helpful!
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If you are flying, remember that airports can be noisy, busy, and scary under the best of circumstances. Some folks will 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.
If he happens to already have a wheelchair or Rollator that he uses regularly at home, it will fly for free on all US domestic flights; you can gate check it at the door of the aircraft. Do try to let the gate agent know in advance as a courtesy so they can alert ground crews and flight attendants. For more questions, call your airline prior to departure.
You can also pack a suitcase with just his medical supplies, and declare it as such, and it should not count against your baggage limits - although check with your airline and make sure what their procedure is for tagging that bag as such. Remember that *only* medical supplies can fly in that bag - you can't pack anything else in there at all.
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One important thing you should do prior to the trip is talk to his doctor about the trip to WDW. That way, if there is some "hidden" issue that you may not have planned for (that could cause an issue while you were visiting WDW) it could be dealt with appropriately before the trip, and not during.
WDW has a First Aid station in each of the 4 Parks, but it is not intended to replace a physician's visit prior to going to the Park. Anything too much more serious than a bandage and/or Tylenol can fix will usually result in local EMS being called, and a "bonus" trip in an ambulance to an unfamiliar ER - which can be a nightmare for anyone traveling.
It will be extremely important to keep him hydrated - not just with coffee or tea, but water, and plenty of it. Dehydration can wreak havoc with any of us, and can cause silent UTIs (Urinary Tract Infections) that can mimic everything from a stroke to Alzheimers/Dementia in an otherwise healthy human, so it's super important to make keeping everyone hydrated a strong priority. Free ice water is always available at every Disney food service location; just ask a Cast Member.
Sunblock will be very important - skin not regularly exposed to the sun can be very fragile, and you don't want him to get sunburned while sitting in a wheelchair. Remember that places like the tops of ears, back of the neck, arms (if exposed) backs of hands, tops of thighs/knees (if he is wearing shorts) and even the tops of his feet - all may be exposed to *much* more sunlight than he is used to. Wearing a hat can help prevent the scalp from getting sunburned.
It's important to try and keep his schedule for meals and meds and sleep as close to the regular daily home schedule as possible. It's so easy for us to keep going and just snack here and there, but for someone who is medically fragile, sticking to their regular schedule can be very important.
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My mom had incontinence issues related to her stroke-related dementia.
Whenever traveling, we would set up "bathroom kits" that I would create in a gallon zip-lock bag. Each "kit" would have:
- a fresh pair of disposable adult briefs
- a pair of nitrile* gloves
- a small supply of wipes in a sandwich size zip-lock bag.
- a fresh, clean damp washcloth folded in a separate ziplock bag. (You could also substitute a clean cotton bandana if you prefer)
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, but that's optional.
In two separate 2-gallon zip-lock bags I would put one pair each of the soft knit pants she preferred to wear in case we needed a wardrobe change. As the day progressed, I would keep/consolidate any "extras" from the toileting kits 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.
Typically, everything fit nicely into a backpack that we hung off the back of her wheelchair.
*we only carry nitrile gloves so we don't accidentally expose someone with a Latex allergy to a trigger.
It sounds like a lot - and the first few times we made the "kits" and put everything together, it was kind of overwhelming to try and figure out what we would need. We also would change the kits based on our location and destination; for example, for trips to the doctors office, I would bring along some toilet paper from home because she hated the paper provided in the restrooms there.
Remember that toileting kits can come in handy during travel days as well.
Bring what you need - and especially what *he* needs - to feel comfortable.
Remember to look for the Companion or "Family" restrooms in all the Parks. They are marked on all Park maps.
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For the hotel room at night, you might want to bring along a nightlight or keep the bathroom light on with the door cracked so that y'all can see to get to/from bathroom. A nightlight worked better for us, because Mom would forget and turn off the light, and then stand there in the dark in an unfamiliar place.
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If he has begun wandering, or has trouble remembering who he is with, or where he is, some folks will encourage the use of a lanyard with his name + your name and cell phone number, but those can be removed... Pinning a name tag to his front works until he removes it. Same thing with "safety bracelets" (used for kiddos and Sr's alike); a determined person will just take it off, and the same for a Magic Band. Some folks will use a Sharpie marker, and write contact info directly on the skin - and this can work for kids, but he might not welcome that, and scrubbing it off could be traumatic for him when bathing. 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 my Mom's 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, even when she was seated in a wheelchair. Write "If I am lost" on the outside.
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Just based on experience.. here is a list of the things I would be thinking about/preparing for regarding both the trip itself, and actual park day(s):
- Any meds he will need to bring along; so that you can keep the proper doseage, and schedule
- Foods; will he require some assistance or oversight for ordering, and/or eating? Does he have preferred utensils to bring from home? If his favorite snacks are not easily found when traveling, consider bringing some with you.
- Clothing; many folks have clothing issues (itchy or binding clothes causing discomfort) Creating an outfit for each day in advance, complete with undergarments and shoes can help. Be sure to bring favorite night clothes!
- Comfort items; for example, my Mom always loved to have her crossword puzzle book and pencil with her. (and our daughter can't travel without the quilt I made her... LOL so yes, we used to bring the whole house with us)
- Does he have any sensory issues; for example, will it be sensory overload just to sit *next* to a ride, like the Teacups, that spin, and have not only lots of motion, but potentially lots of sound? Can he tolerate noise and crowds for long periods of time, or will he need periodic "respite" in the room or first aid?
- What are his cognitive abilities; can he self-identify? If he does happen to get separated, would he be able to tell a Cast Member who he was, and who you are in a moment of stress?
- Will you need to make bathroom kits? (See above) Have you traveled away from home recently, and know he handles self-toileting in a strange envoirnment?
- Think about his physical abilities in general; what does he need in the way of accommodations for the trip? Will you need a roll-in shower? Can he bathe and/or toilet himself, or will he need assistance?
- At night, in the hotel room, plan for safety lighting, and if you will need an alert or alarm if he gets out of bed. Generally speaking, try to take the bed nearest the door if possible. If he is disoriented easily at night upon awakening to toilet, remember that a balcony or patio can be a hazard as well.
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Finally, about the wheelchair - just a couple of tips to help out. First, you may want to take along a pair of inexpensive bike gloves (or similar) for any member of your party who will pushing her in the chair. Rental chairs tend to be heavy and bulky to begin with, and it doesn't take long before those hard hand grips make blisters. You will be surprised at how many ramps, inclines and hills there are at WDW!
Take along a brightly colored length of grosgrain ribbon or a brightly colored bandana to tie around the handle of the wheelchair. CMs do have to move chairs, strollers and
ECVs on a regular basis to help keep walkways clear and paths open. If you have a bright colored bandana on the handlebars, it will stand out much easier in a sea of similar black mobility devices.
Resist the temptation to hang purses, diaper bags, shopping bags, etc. off the handles of the wheelchair - it just adds to the weight, and can cause a potential tipping issue if/when he transfers out of the chair (to eat, to toilet, etc.)
If he will be sitting all day - and not getting out of the chair to ride any rides, or to move to a chair to eat - then I would either also rent a gel cushion for the seat, or plan on padding the seat with towels from the hotel. Encourage him to stand every hour, (if possible) if for no other reason than to straighten up and "fluff" the seat pad, and prevent serious stiffness issues.
Remember that you will always load first and unload last on buses, monorails and boats. CMs, drivers and captains will all be super helpful; just let them know you are eager to follow their instructions for safety!
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