ALZ and WDW

[Cbrtls5]

We are taking a family trip to WDW in June. My mother has early onset Alzheimer's. This is her one wish before she completely loses her memory. I'm a little concerned about that crowds, noise, overstimulation. She has mobility issues as well. She can't stand for long periods or walk very far.

Anyone have tips, hints, etc that worked for you?

We are a group of 10. Dh and I are taking our children 16,20,23 and granddaughter 11 mos plus his parents and sister (MIL has mobility issues due to a previous stroke) and then my parents. We should be quite a group!

 

[Bete]

We took my mom around 6 times with later stage ALZ. It's doable. It was my husband and I and we managed. We were all seniors. Everyone is different but my mom seemed to enjoy being there. For example, she shook hands with Mickey during the MK parade. She wasn't afraid of the crowds. The noise was tolerated, too. I didn't find her overstimulated but we averaged a 6 hour day in the parks and a few days of 8 hours. We did more shows than rides. She did nap a few times in the shows. If we had a longer day in the park we would have a mid afternoon nap. Don't underestimate the power of a nap. The best ride she did was Soarin'. She never went on a roller coaster. We did Buzz and Toy Story Mania.

I would have an ID bracelet with pertinent info or a necklace ID. Keep an information card with her identifying her with ALZ. Have a phone number to be reached just in case on her. She could become separated and nervous.

She will probably take longer to get ready in the morning and to go to bed. Plan for the extra time. My mom needed help washing up. Don't start the day out rushing. Allocate enough time to do this slowly.

I think it's a good idea to have her in a wheelchair. This will keep her with a family member at all times. It will help her to last longer in the park, too. It takes the load off of trying to follow everyone all the time. She can just relax. If she wants to walk some she can push the wheelchair herself and use it like a walker.

For eating we did a lot of buffets. For one, it's faster and there are so many different items to choose from. If she took something and then didn't want it it wasn't a big deal. She could just get something else.

We automatically did a lot of restroom stops. Usually, we tried every two hours.

If you see signs of stress then you know it's time for a rest.

For the resort, we used a motion sensor placed strategically in case she became a flight risk.

 

[gap2368]

We are taking a family trip to WDW in June. My mother has early onset Alzheimer's. This is her one wish before she completely loses her memory. I'm a little concerned about that crowds, noise, overstimulation. She has mobility issues as well. She can't stand for long periods or walk very far.

Anyone have tips, hints, etc that worked for you?

We are a group of 10. Dh and I are taking our children 16,20,23 and granddaughter 11 mos plus his parents and sister (MIL has mobility issues due to a previous stroke) and then my parents. We should be quite a group!

my Grandma had ALZ and it is so hard on the family to see a loved one slowly go. my thoughts are with your family and I hope this is a wonderful trip.

I would rent your MIL a wheel chair since she already has a hard time with mobility this will give her a place to sit, this will also help with wondering off and losing her, with a big group there should be someone to push her when in the lines she can hold the 11 moth old and focus on her if there is too much going on ( if the 11 month old let MIL, but I think there will be times she will)

if she has a hard time with sound first aid has the in hear plugs that you can use or you can bring something from home to use

I would try to go during a slower time ( and pretty soon will be slower) so like January Feb. and also the weekends tend to be a lot busier so if you can do a Monday through Saturday trip ( have Saturday the day you leave not a park day) that would help too.

go at your MIL ( and maybe the 11month old) past if they want to sleep in then sleep in ( with in reason) take rest during the day a QS or a long show or just sitting and people watching might be just enough. If MIL needs a quiet place you can always ask a CM where one is they are normally good at pointing out place that normally do not have a lot of guest at then first aid almost hallway be a place if need be. if you can afford a hotel room that is close to the theme parks you may want to do this to have easy access. As fair as crowds go you can make a little bubble around your MIL so that she will not feel so crowded ( when in lines) keep her in gaged in the conversion ( again in lines if she is up to it) if it is crowded just walking around and sh is using a wheel chair I find a very small umbrella gives enough personal space that I never notice anyone else ( I hurt my foot one day on one of my trips and this is the only way I made it thought my EPCOT day, so lucky I had my friend with me that day)

I hope you have a wonderful trip

 

[littledebbie335]

Be sure that your mom is drinking enough fluids and staying hydrated! It can be hard for those of us without memory issues to drink enough water when we're busy enjoying the parks, so it's especially important to be sure that someone with Alzheimer's is drinking plenty of water. We traveled with my grandfather when he had early Alzheimer's (not to Disney, but during the summer and I think the advice still applies here). He also was dealing with some bladder issues and tended to not drink very much water because he didn't want to inconvenience the family with frequent bathroom breaks. The end result of this was that he almost fell in the bathroom (started to sway and my dad luckily saw and caught him). After that, we made sure to give him plenty of fluids.

I think it's really wonderful that you're taking your mom on this trip, and I hope you all have a great time.

 

[mamabunny]

I can't stress enough to keep her hydrated - UTIs are common in ALZ/Dementia patients, and can wreak havoc under the most controlled circumstances.

If you (and any caregivers) have a bit of time, I fully recommend taking some time to go to the Message Boards at alz.org. There you will find a compassionate and experienced community of loved ones and caregivers who will become an invaluable resource to you as her condition progresses.

My mom had stroke-related Dementia, which presents with very similar symptoms to Alzheimers, and is often treated in a very similar fashion. I found those Message Boards to be a true lifeline more than once during our 5 years of caregiving in our home.

We took Mom back to WDW one last time, early on in her diagnosis. 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, 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.)
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.

- 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 Alzheimers/Dementia 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 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.

- 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, you can hang a standard backpack off the back on the handles to keep everything handy.

- If you are flying, remember that airports can be noisy, busy, and scary under the best of circumstances. Some Alzheimers 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.

- A motion sensor for the room is a good idea; we also put a Christmas bell on the interior door handle that would make noise.

- Small, familiar things are important - bring her favorite hand lotion, try to replicate her bedtime/morning routines from home as closely as possible. The more comfortable and relaxed she is, the better the trip will be for everyone.

Like others here, I have walked this path with my Mom, and I know how difficult this is. 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.

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. 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.

 

[Cbrtls5]

Thank you for all the informatioN!