First off, I am extremely excited to announce that I was finally able to convince my step dad to come to Disney with us in January and bring my mom! My mom had a severe stroke 3 years ago. We live in MN and this will be the first time my mom has been on a plane since her stroke. It will be my mom, my step dad, myself and my best friend who is also a critical care nurse. My mom's needs are not currently critical, but bringing my friend was a good negotiating tool to convince them we would be able to handle any needs associated with my mom's travel
I have been to Disney many times, but this is the first time I will be coming with someone with a disability. I have started doing my research and the one thing I have noticed is that
DAS access to rides seems to be quite the hot topic! I am trying to decide if I should even try getting a DAS pass for my mom. The stroke has left her with severe aphasia and apraxia. Basically she is unable to speak and even though she can understand, she cannot follow simple directions. If you ask her to do something, she knows what you are asking, but is unable to do what you are asking. To say she gets frustrated is an understatement. She does better in familiar environments. For example, if she needs to use the bathroom, get a drink or a blanket, if she is at home she knows where these things are and can just go do/get what she wants. I should mention that she can walk very short distances to facilitate getting what she wants at home. When we are in unfamiliar environments she gets easily confused and it can become quite stressful and tiring. I could see the queues being a struggle for her.
I know she will be happy to just be at Disney no matter what she does or doesn't get to do. However, I also know she would love to go on rides such as Soarin and Navi River. If you were me would you try to get a DAS pass for her or just set up the trip that we will be visiting the parks but skipping the rides? I know for many the rides make or break their vacation. This is not the case for us. Although I think she would enjoy some rides, I also think she will just be happy to be at Disney! We are staying at Animal Kingdom - Kidani Village in a 2BR savannah view. My thought is that she will enjoy being able to sit on the peaceful balcony and watch the animals
Thank you all for any advice you have! If you have any other advice for our travels please feel free to share!
Personally, I don't know that the DAS is going to be all that helpful to you. We never used it with my Mom, simply because the primary accommodation that she needed (someplace to sit, and a "bubble" in line) were both solved by using a wheelchair for her.
My Mom was a stroke survivor; in fact she had "multi-infarct dementia" and was "locked in" not unlike your mom. I was my Mom's primary caregiver during her final years. I hope some of my experiences can help you have a better trip.
We took Mom back to WDW one last time, after her first, biggest stroke, but before she became fully home-bound. 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 that I 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.) I always encouraged the medical staff to photocopy it, and return the original
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. Don't rely upon electronic copies at this time - not every provider will currently accept them; bring paper copies.
- 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 stroke 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.
The result of her strokes 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 calmly and appropriately. Catastrophic reactions can occur at any time and for any reason, 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 a catastrophic reaction should occur while you are traveling, remember that you must remain as calm as possible because in that moment, her reaction is being caused by damage from the stroke, not anything else.
- 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, (and you should) you can hang a standard backpack off the back on the handles to keep everything handy.
Speaking of a wheelchair... go ahead and let Mom know that you are going to rent a wheelchair, so that she can sit and relax, and leave the driving to you!
The part she doesn't need to know is that this can help create a "safe zone" for her - you, your friend and your Dad can surround her if she starts to get overwhelmed, and create a "bubble" around her of familiarity. If she seems to be distressed at the idea of not walking, remind her that she can walk around at the Resort, where it is quieter, and there are less people. My Mom was able to walk until the last few weeks of her life, and keeping her independence was important to her, even though she lost the ability to verbally communicate. Remind your Mom periodically that you are renting the wheelchair because the *average* Guest at WDW walks between 3 and 10 miles PER DAY.
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 lost/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 stroke 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. We also took along blue "painters" tape, and covered over the sliding lock; it was easy for us to remove, but kind of made the lock "invisible" to her.
- I can't stress enough that small, familiar things are important - bring her favorite hand lotion, try to replicate her bedtime/morning routines and meal times from home as closely as possible. The more comfortable and relaxed she is, the better the trip will be for everyone.
Last thing to know is this: 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. If she loves Mickey Bars? Let her eat as many of them as she wants
The Magic will come with the memories that you create now. And if she just wants to stay at the Resort, and look out at the animals? That's OK too - spend every precious moment you can with her.
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, and we caught it on film. 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.
