Thank you so much. She's (mostly) still herself, with increased agitation and trouble handling business and money matters. I'm hopeful she can still enjoy the trip.
That is such a good point about the hotel. We were going to stay with my oldest daughter and her fiancee. She had expressed concern about staying with the fiancee (just kind of uncomfortable). I think you convinced me to get two hotel rooms, hopefully connected, and my older girls can have a room and Mom and I can have a room. She does get worse at night, etc., so if it's just she and I in the room, she can sleep with the tv on and the bathroom light on, etc. I really appreciate the kind words.
My Mom had stroke-related dementia. I was lucky to be her caregiver for the last years of her life, and we went to WDW fairly early in her diagnosis. Here's some info that may be helpful:
One important thing you should do prior to the trip is talk to her doctor, or have someone who goes with her to her appointments ask the doctor's opinion about a trip to WDW. That way, if there is some "hidden" issue that you may not know about (that could cause an issue while you were visiting WDW) it might be brought to everyone's attention prior to the trip, and it could be dealt with appropriately.
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 a dementia/alz patient.
It will be extremely important to keep her hydrated - not just with coffee or tea, but water, and plenty of it. Dehydration can wreak havoc with elders, and can cause UTIs (Urinary Tract Infections) that can mimic everything from a stroke to Alzheimers/Dementia in an otherwise healthy elder. (That's why if you have an elder who suddenly starts acting weird, the first thing a Geriatrician might do is to test their urine for a UTI)
Sunscreen will be very important - elderly skin can be very fragile, and you don't want her to get sunburned. Remember that places like the tops of her ears, back of her neck, arms (if exposed) backs of hands, tops of thighs/knees (if she is wearing shorts) and even the tops of her feet - all may be exposed to *much* more sunlight than she is used to. Wearing a hat or scarf can help prevent her scalp from getting sunburned; Be sure to use a gentle sunblock on any exposed skin.
It's important to try and keep her schedule for meals and meds and sleep as close to her 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; for dementia patients it is extremely important.
You may want to consider renting a wheelchair for her, just in case she gets fatigued; my Mom would suddenly and unexpectedly get tired; after a certain point, they have difficulty in regulating and anticipating their own needs. Better to have it, and push it around empty than not have it, and need it.
Travel - or anything different - can set off "catastrophic reactions". Mom started having "catastrophic reactions" to ordinary everyday events; things like being afraid of drinking water - or going to the bathroom. Catastrophic Reactions tend to be rapid onset, and can last for any amount of time, and be for any reason. If you think she is "just overreacting" or "being overly dramatic" it may be a catastrophic reaction. You can find a lot of good advice on how to deal with these kinds of issues in the forums over at Alz.org; I found it to be an amazing source of support.
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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.
Bring what you need - and especially what *she* needs - to feel comfortable.
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For the hotel room at night, you can use one of these (we used it with my Mom to alert us if she got too far down the hall at night)
Wireless Driveway Alert System
You can place the alert unit on the floor, so that if she gets out of bed and breaks the beam, it will sound. The version we bought (several years ago) was QUITE loud, but my husband "muffled" the sound by wrapping the alarm unit in several layers of newspaper and a beach towel, and then putting it into a ziplock bag to hold his wrapping together. Looked weird and lumpy and silly, but it worked!
You can also hang a Christmas bell on the interior Resort room door that would make noise if she tried to leave during the night. Take along some blue painter's tape (won't damage any surfaces in the hotel room) and hang the bell high enough that she can't reach it, but so that the movement of the door will cause it to jingle.
It goes without saying that you will probably need to use a nightlight or keep the bathroom light on with the door cracked so that she 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 she has begun wandering, or has trouble remembering who she is with, or where she is, some folks will try to use a lanyard with her name + your name and cell phone number, but those can be removed. Pinning a name tag to her front works until she 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 she might not welcome that, and scrubbing it off could be traumatic for her 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. Write "If I am lost" on the outside.
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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 she happens to already have a wheelchair or Rollator that she 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.
Remember that toileting kits are handy when flying as well.
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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 she will need to bring along; knowing what each one is, doseage, and schedule
- Foods; knowing what she will and won't eat, and what favorite snacks are - and is she fully independent when eating, or does she require some assistance or oversight?
- Clothing; many older 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 nightgowns!
- 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 we bring the whole house with us)
- Does she 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 she tolerate noise and crowds for long periods of time, or will she need periodic "respite" in the room or first aid?
- What are her cognitive abilities; can she self-identify? If she does happen to get separated, would she be able to tell a Cast Member who she was, and who you are?
- Will you need to make bathroom kits? Have you traveled away from home with her recently to see how she handles self-toileting in a strange envoirnment?
Again - (really can't overstate this) hydration is super important; lots of people don't know that a silent UTI in an elderly person can actually cause symptoms consistent with advanced dementia, so it's super important to make keeping everyone hydrated a strong priority.
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.
- Think about her physical abilities in general; what does she need in the way of accommodations for the trip? Will you need a roll-in shower? Can she bathe and/or toilet herself, or will she need assistance?
- At night, in the hotel room, plan for safety lighting, and if you will need an alert or alarm if she gets out of bed. Generally speaking, try to take the bed nearest the door if possible. If she is disoriented easily at night upon awakening to toilet, remember that a balcony or patio can be a hazard as well.
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! 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 she transfers out of the chair (to eat, to toilet, etc.) If she 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 her to stand every hour, 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 follow their instructions for safety!
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This is all *lot*, I know. And you may think "I don't need all of this information" - But (aside from hydration, hydration, hydration) the most important thing to know about your Mom is that she is probably "hiding" her condition better than you realize. I was shocked when we discovered the actual extent of my Mom's dementia, and it was simultaneously impressive and frightening how good she had been at covering her decline.
This is a common thing that happens with elders who have any form of dementia - don't be surprised if during the course of the trip it becomes more and more evident to you that her condition is more advanced that it appears to be.
And although I know that the thought of the "one last time" trip is overwhelmingly sad, find all of the Magic you can, and make all of the happy memories you can. To this day, when we visit, we go first to the Magic Kingdom, to my Mom's "spot" - her favorite place, the place where I took my most ever treasured picture of her smiling and laughing - and we look up, and we blow her a kiss. The first trip after the last trip is the hardest (just bring a LOT of tissues) - but very, very special as well.
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