Alzheimer's - HELP!

[Jeffrey]

We are terrified - each year around the holidays, my father-in-law likes to take the entire family to WDW - great times, until last few years. His wife is now DEEP into Alzheimer's (e.g., gets aggressive at times, can't conduct a discussion, gets lost, does not know her name, yells at times), but still, he's insisting on everyone (including her!) attend again this season. We usually stay at The Yacht/Beach Club.

Does anyone know, is there an Alzheimer's policy issued by WDW? I imagine that the WDW attorneys are perfectly fine with visual/hearing/wheel chair situations (of course), but I'm not so sure about Alzheimer's patients.

PLEASE, any guidance about possible rules and regulations would be so welcomed. For the record, myself and my wife are not in agreement with continuing these annual vacation plans.

Respectfully,

The Smiths

 

[roseprincess]

Hi Jeffrey and welcome to the disABILITIES boards!

Also to you and your family, coping with a family member that has alzheimers. That is very difficult to cope with. My father- in-law has early onstage of alzheimers/dementia. He lives by himself, some friends and a family member check on him every so often to make sure he is ok. He is starting to get argumentative, noticed this in August. His long-term memory seems ok. Short-term memory is not there.
I used to work on a locked alzheimers unit a few yrs. back, as an RN. Some of the residents there were exactly like you mentioned about your mother-in-law- argumentative, doesn't remember their name, yelling, pacing up and down the halls. I remembered, some of the residents were in Houdini belts and harnesses in wheelchairs.

Unfortunately, I'm not sure I can answer your question about WDW policies on this. I have only gone to WDW twice in my lifetime so far. I'm hoping Sue M,our moderator here, on these boards can help you out on the policies. Maybe there are others that may know the policies on this at WDW?

For me personally, I would ask these questions before deciding if a person w/ alzheimers should go to WDW. I would ask, does this person tend to wander? does this person wear a medical ID bracelet? Can this person sit in an ECV for an hour or two at a time? Can this person sit in a w/c for a period at a time, without getting up every so many seconds or minutes? Is this person combative? Does she hit or kick family members and/or people she doesn't know?
You really have to think about this person's safety, is this person safe to herself and safety to others?

Best wishes on the decision to go to WDW.

Rosemarie

 

[bopper]

Can you get an aid to come with you and help take care of your MIL?
If your MIL is still living at home (or not), it probably is tough on your FIL and he is trying to keep some normalcy with the trip.

 

[wtpclc]

When my grandmother was in the nid to late stages of alzheimers, changes in location effected her terribly. I wish I could tell you tat WDW has a policy that would help your cause, but I do not. Change from teh routine is very hard on them though and really could make it worse.

 

[DisneyForLife]

I totally agree with what the previous poster has to say. My father had that HORRIBLE disease and we found that he was confused enough with every day living and to take him somewhere unfamiliar made him very agitated. I would not have taken him to Disney with all the unfamiliar faces, not to mention breaking up his regular day to day routine. It would have been a nightmare for us and unfair to him.
Good luck with this, I am sure it is hard for your FIL to give up the life he was used to with his wife. It is very, very hard on all the loved ones.

 

[SueM in MN]

I don't know WDW's policy, but I'm pretty sure they don't/can't have a policy against people with Alzheimer's visiting the parks for ADA reassons. It's probably the same as the rides; they don't have a policy against doing something. They put out a warning, and then it's up to the individual guest to judge if it's wise to do it.
But, if she gets into a situation/state where she becomes abusive, disruptive or dangerous to the other guests, I'm sure that security would become involved, and the only choice would be to leave the park. That would be difficult for the whole family.

But, I totally agree with all the other posters (and you). I think it is a very bad idea, given what you are reporting about her abilities.

It is hard for the family of someone with Alzheimers to understand/ come to grips with their decreased capacity, but there comes a time when it is not safe for them to be going to public places (and as other posters already menioned, it's not going to be something she enjoys either. And it could be dangerous. Many people with Alzheimers become wanderers and someone who can't tell their name and doesn't know where they are staying could get into a lot of dangerous situations, especially at night if everyone else in your party are sleeping. She may stay quietly in a wheelchair (prevent anyone from renting her an ecv), but a lot of the attractions are loud, which may be unpleasant for her. And if she has lost the ability to communicate with words, she will communicate in any way she can - which might include hitting (if you are lucky, it will be family members and not strangers).

Is you FIL involved in any sort of support group? He might find that helpful. The one thing I remember from when I had some Public Health client with family members with Alheimers is how very isolated they felt. being able to talk to someone else who was going thru a similar experience helped people to see the experience mopre clearly. He is probably feeling guilty about leaving her home and her missing all the "fun" of the trip, but somehow he needs to understand that the trip is going to probably be distressing to her - not fun. That's the angle I'd probably try to convince him of rather than getting into how difficult it is going to be for the others in your party.

 

[videogal1]

I don't know WDW's policy, but I'm pretty sure they don't/can't have a policy against people with Alzheimer's visiting the parks for ADA reassons.

Exactly. OP will have to bite the bullet and be the "parent" on this one, trying to fight the obvious denial on the part of the one who is supposed to have better sense than to expose his wife to what might be a very unpleasant experience...Good luck!

 

[HopperFan]

I am assuming you have doctors and therapists involved with her care. Could you all possibly talk with them, and then they could have a professional interaction with your FIL explaining why this would not be in her best interest. He may take the advice from her medical care providers better than from you all, especially if they come from the angle they are looking out for what would be best for her. I would also ask to be there when they tell him so that everyone hears the same thing and stays on the same page.

Is there an alternative trip (even for just a few days) you all could do together that would be less stressful for all. Something that could leave a positive memory for everyone. Your FIL may need the family gathering to just help him keep going in this difficult situation. Good Luck

 

[Twende]

We had this problem this March and we are dealing with it again now.

My mom is bad but not too terrible. She gets very impatient and has a terrible time waiting in lines or waiting for meals. It is basically like dealing with a large unruley child. She has no short term memory. She still knows who we are and who she is. She does wander so we had to take turns really watching her. She is fast and even after 3 broken hips she sometimes can out run me. We use a wheelchair at times just to let her rest a bit and to keep track of her. She realy needs an afternoon nap or by dinner time she is really bad. Her conversation level is rapidly dropping and we find sentences with more than 4 or 5 words just confuse her.

We got a letter from her DR. and with that got a GAC pass. That really helped in that it gave us places to wait for attractions without having others around us. We took turns distracting her when she was irrated. It takes a lot of energy to care for someone like this so we had a schedule of turns so that we were not all worn out.

Strange things and places are a problem for her too so we stayed in a Resort that she always loved and knows her way around. She can remember things from 25 years ago but not five minutes ago! Staying somewhere familiar was good for her except for the wild carpet pattern at CR. It drove her batty last time and she kept tripping over a pattern in the carpet! It is funny now but at the time I was afraid for her.

We are trying a new resort(BC) this time. One with more soothing colors we hope!

She is pretty good about staying in a seat, like in a theater or show. She misses some things in the 3-D shows like the smell of the apple pie. The disease has robbed her of her sense of smell! She still loves to ride and rode TOT with the only problem being me trying to buckle her seat belt! I was doing it wrong and held up the whole car. The CM was ever so patient with me and was trying to stay in character but you could tell he was at me! She even rode the AK roller coaster that spins(Primeval Whirl?) and got off it no poblem. I needed help because I was so dizzy!

We had trouble at resturants with her waiting for meals so we try to bring little snacks or order something like a small salad for her to eat right away. We took her to RainForest last time and I was afraid it would be too much for her but it turned out she was certain that the elephant was real and she kept a close eye on it to make sure it did not trample the diners. It was a great distraction! She loved the fish tanks too!

So for right now we are still able to make the trips. It takes a lot of work and coordination from all involved but she still loves Disney and as long as we can give it to her we will.

I hope you can find a way to resolve your family problem and still enjoy Disney!

 

[SueM in MN]

We got a letter from her DR. and with that got a GAC pass. That really helped in that it gave us places to wait for attractions without having others around us. We took turns distracting her when she was irrated. It takes a lot of energy to care for someone like this so we had a schedule of turns so that we were not all worn out.

Just wanted to mention that you don't need a doctor letter to get a GAC (Guest Assistance Card).
Here's a summary of information about GACs. I cut and pasted it from another thread, so some of the language (like "your friend") doesn't fit, but (sdorry)_ I'm tired and don't want to take time to fix it.

• Have your friend go to Guest Services in any of the parks and talk to the CM there about her problems and needs. The diagnosis is not really that important because people with the same diagnosis can have very different needs. The GAC is not given based on diagnosis at all (for example, there is not a "list" of appropriate diagnosis for a GAC); the GAC is given based on needs and the accomidations that meet those needs.
  The GAC is usually given for up to 6 people (5 plus the perrson with a disability) and is valid at all the parks for your length of stay (you don't need to get a new one at each theme park).
  A few other things
• the GAC is not meant to be a pass that gives immediate access. In fact, about 6 years ago, they renamed it to Card because when it was called a Pass, people thought it mean front of the line access. It says right on the card that it will not shorten or eliminate waits in line.
• it is meant as a tool to tell the CMs what the person's needs are so that they can provide appropriate accomidation for the person it was issued to. Some examples of accomidations might be a quieter place to wait, a place out of the sun (for those times when the line is in the sun for a prolonged period of time).
• because what is stamped on the GAC is based on needs, not all GACs say the same thing.
• think of the GAC like an insurance card, not necessarily needed or used all the time, but there for when you need it.
• even on the same attraction, the GAC is not always handled the same each time. Exactly what happens depends on how busy it is, how many other people with special needs are there at the time and staffing. Some times you may be sent thru the regular standby line, occassionally the fastpass line; sometimes the person with the GAC and a member of their party will be given an alternate place to wait while the rest of the party goes thru the standby line - and then meet up with them when they get to the front. Sometimes you might be given a slip and told you can come back at the time written on the slip (usually equal to the standby time); very occassionally, you might be taken right in. It depends on what they call "attraction considerations" (which is basically the things I listed in the second sentence).
• Fastpass is a good way to avoid waits in line. You don't have to be present to get a fastpass, you can send one member of your party ahead with all the park passes to get fastpasses. When you report back to the ride at your fastpass return time, your wait will be 15 minutes or less.
• I'd strongly suggest she consider renting a motorized scooter (also called ecv). The distance and time spent going around the parks is much greater than the time and distance spent in line. With an ecv, she will always have a place to sit and can conserve her energy for fun, instead of just getting around. There is information about ecvs in the disABILITIES FAQs thread near the top of the disABILITIES Board. Most lines are wheelchair/ecv accessible.
• If she gets tired and needs to lie down in air conditioning for a while, there is a First Aid station in each park. They have cots in individual cubicles for resting.

__________________

 

[michellex2]

I just finished booking a week long trip to AKL in December for my mother and myself. My mother is frail physically and mentally, using a wheel chair and having middle stage Alzheimers. She went to Disney for the first time with me last Thanksgiving for 3 nights, staying at the Wyndam Palace. It was a wonderful vacation for both of us, and hence I am taking her back.

Her condition is different than that of your MIL in that she is always calm as long as I am with her. She is 84 y/o, petite and silver haired with a tiny wheelchair and easy smile, and hence tends to draw kind responses. During our last trip, which was at crowded Thanksgiving time, everyone, fellow guests and cast members were wonderful with her. I used the "small children" guidebook suggestions for her to choose rides, and she did well with those rides. She loves Epcot, LOVED Mickey's Very Merry Christmas Party (we stayed until it closed) and Animal Kingdom was wonderful (especially easy with her chair). I rented a car, which made transportation with her chair easier, and we broke the day up, again like you might with younger children. We'd get up early and go to the park, then have a late lunch and head home. She'd nap while I'd swim or have time to myself. (She was able to stay alone, as long as I left a large sign on the door reminding her that I was swimming and when I'd be back.)

Disney is actually one of the only vacations that Mom can still truely enjoy as most of Disney is not about intellectual comprehension. And it is wonderful for me as well to be able to share something she enjoys with her, as the sad thing about dementia is that it becomes harder and harder for the loved one to find joy in life. My guess is that the desire to have shared happy times is what your FIL is wanting, but he may not be able to accept that it might be beyond your MIL's ability. Even with my mother who is much less reactive than your MIL, I'm very selective about what we do and trying to coordinate her needs in a large group woud be almost impossible. For example, she loves singing, so we are doing the CP twice with different narrators. If there was someway for a caretaker familiar with Alzheimers to go with and simply tend to your MIL, this trip sounds like it would be much more doable. She could join some activities, but not all.

Many of the things at the parks, Mom didn't always "get", but again, like a young child, that did not stop her from enjoying them. And she loved the dining, the friendliness and the Christmas decorations. The special services people at Disney have been wonderful with room arrangements and other special needs, such as refrigerating her daily injections, etc.

For my mother, Disney was magic, and since her health is declining, and this will be her last trip, I'm hoping it will even more magical this time.