Disney with parent who has Alzheimer's

[jennji]

We are visiting Disney the last week of October. I am traveling with my DH, DS (age 2) and my parents. My mother is 66 years old and in the early - mid stages of Alzheimers. She is still fairly cognative, but needs help with some basic tasks, and loses her balance. She gets confused at times, and forgetful, but she is not to the stage of not knowing who she, or we are, or where we are. She is generally a very happy, fun loving person, and very, very excited to be going to Disney with her grandson (who is the apple of her eye). Needless to say, this will probably be her last trip to Disney (but let's hope not). We are staying at SSR. Does anyone have experience with traveling with someone with Alzheimer's at the parks? Suggestions or advice? It would be much appreciated!

 

[Disney1976]

We are visiting Disney the last week of October. I am traveling with my DH, DS (age 2) and my parents. My mother is 66 years old and in the early - mid stages of Alzheimers. She is still fairly cognative, but needs help with some basic tasks, and loses her balance. She gets confused at times, and forgetful, but she is not to the stage of not knowing who she, or we are, or where we are. She is generally a very happy, fun loving person, and very, very excited to be going to Disney with her grandson (who is the apple of her eye). Needless to say, this will probably be her last trip to Disney (but let's hope not). We are staying at SSR. Does anyone have experience with traveling with someone with Alzheimer's at the parks? Suggestions or advice? It would be much appreciated!

While I have never tried to take him to Disney, I wanted to respond to your post because my father also has Alzheimer's Disease, which is now more in the mid-stages. It's a horrible illness, and I know all too well what you are going through, so I hope you have a wonderful time.

I will say, though I never took him to a place like WDW, even in the early stages, my father had one or two incidences where he went out driving (as you know, that early stage can last for quite awhile) and became confused. Once, he headed for Home Depot, and ended up over 2 hours from his house, unsure of how to get back! I actually had to drive from my home in Orlando to get him. So, confusion, even momentary confusion, is of course still possible.

Honestly, I don't think you'll have those sorts of problems while on your trip though, because I would imagine that you're going to mostly be traveling as a group together, and that someone will always be with her anyway. I think staying at SSR is also a good plan, as everyone can be in the same "room"/"villa".

I sincerely hope this isn't your mom's last trip to Disney World with you and her grandson. Appreciate the early stages and capture many memories, as these are good times. Your mom is fully aware of her surroundings, who people are, and has no difficulty speaking. It's wonderful you can do this together.

Have a great time!

 

[Cheshire Figment]

Especially if she has balance problems you should strongly consider renting a wheelchair for he. You might want to get a "transport" chair as opposed to a standard wheelchair. This is the one with the four six inch (or so) wheels and not two large and two small. When she is in it she cannot drive it away, which can be done with a standard chair.

 

[jennji]

Thanks for your posts! I am renting her a wheelchair (although she is dead set against it)! I will ask about the transport chair. Also, she will always be with someone, be it me, or my father. I think this will be a great trip!

 

[Twende]

My mother has the same diagnosis although she is quite a few years older than your mother.


I take both of my parents to Disney one or two times a year. They love it and normally my mom does pretty good. I like it better when I have anther younger adult to help me like my DH or one of our adult DD's as the work of caring form my mom is exhausting and another pair of hands or cool head is so necessary.

We use a push wheel chair just to keep track of her. She has broken her hip three times but can still get around pretty good and easily get away from me.
Keeping her in a wheel chair gives me peace of mind.

I get a GAC to help with quiet places to wait our turn for attractions. When frustrated my mother turns into an adult with a toddler mind and you just never know what she is going to say or do. She makes horrid remarks to others around her. Things she would have never ever said. These things could be very hurtful to those who hear them and do not understand her problem.

Her hands also tend to do things that a child might try but an adult would reason against.

As an example let me tell you about trying to see CP a few Christmases ago. It is a bit funny now but at the time I was horrified. We did not have the package so we had to wait in the standby line. It was quite long and we were in line for over an hour when it became very clear that the show was starting and we were not going to get seats. It was suggested by a CM that we could move to an area in the back of the theater, outside the roped off area and see some of the show and definitely hear it. So we moved there. We had a fairly descent place to stand but many people were crowded in and my mom was in a wheel chair so it was hard for her to see anything. Well she got impatient and as this man next to us moved in front of her she grabbed him from behind by his "male objects" and twisted! I thought I was going to die on the spot! I got her to let go and we bid a hasty retreat! I bet the man thinks twice before he moves in front of someone again!

So with this memory close we try to keep my mom away from crowds and other people. She is very unpredictable.

I try to keep her meals on her regular schedule as that helps keep her medicines on schedule. I also pack lots of silly distractions for her like a tube of bubble juice, plastic twisting puzzles, a light up necklace for nights, candy and small treats to occupy her, a bottle of water, a blanket to line the wheel chair and then use as a way to give her a sense of "her area" when we are seated in bleacher seating, sometimes I pack a small stuffed animal or Mickey for her to hold and love on, we tried the pal Mickey but the volume of it was not loud enough for her to hear it, I sing old songs that she knows and in general try to keep things happy and familiar for her.

She loves to do the attractions that were her favorites when she was healthy. For her every trip now is like the first time as she seldom remembers the recent trips.

Some times I have to explain to those around us that we are doing the best we can in dealing with Alzheimer's. Most people seem to understand. I also sometimes explain it to CM's as we are never sure what my mom's reaction will be when characters approach. She took a swing at one of the tumble moneys in the Lion King show one year when he tried to get "fleas" out of her hair. Another year she found the same monkeys so much fun and was picking fleas off of them!

It is not a vacation for me, expecially when I travel alone with my parents. It is hard work to make sure that she is monitored and then find ways to let her have fun.

Restrooms stops can sometimes be very difficult when she announces like a three year old that she doesn't have to go. I have to stand very firmly and tell her that until she goes that we are stuck here in the bathroom and that she will just have to find a way to try to go just a bit! I have learned to take a change of clothing just in case she has an accident.

I said the same thing you have said about our last trip. I have fortunately said it for about 4 years now! My moms meds seem to have her stable in that she is not getting worse by leaps and bounds. She is doing pretty good considering we have been fighting this disease for over ten years now~!

Remember to keep her hydrated as a UTI (urinary track infection) is very common and causes things to rapidly go down hill!

I also try to tape my mom's name, her diagnosis and my name and phone number on some item of her clothing. Many times it is the back of her jacket because if she finds it she will take it off. So far we have never needed it.

Go enjoy, take loads of photos and just enjoy seeing your parent be a kid again!

 

[Twende]

Oh I remembered something else important.

We never take rooms on the first floor that have a patio door leading outside. We did this once at BC and she found her way outside and we could have easily lost her!

We sick to second floor rooms now!

Also at night I double and triple check room locks so that hopefully she can not open the door and escape into the hallway or outside. It really makes me nervous and I am always getting very little sleep. I usually hang a rope of small bells on the door so I can hear if it is opened.

I keep the bathroom light on for her too and sometimes bring an extra night light from home.

I also unpack her clothes when she is not looking and sort out the outfits on to hangers in the closet by days. I only present her with one outfit the morning of each day and that way we avoid the hassle of what she is going to wear.

Also we have had huge problems with packing her suitcase and leaving for Disney from her home. She has been use to packing everything for the entire family all her life and she gets so nervous before we leave.

We try not to tell her ahead of time and then we pack once, normally without her seeing and then lock the suitcase in the truck of the car and hide the keys! The first year we let her help and she unpacked the car and the suitcase seven times all night long. I was so tired and frustrated with her! She was in tears and so was I!

 

[THUNDERMOUNTAINMOMMA]

Oh I remembered something else important.

We never take rooms on the first floor that have a patio door leading outside. We did this once at BC and she found her way outside and we could have easily lost her!

We sick to second floor rooms now!

Also at night a double and triple check room locks so that hopefully she can not open the door and escape into the hallway or outside. It really makes me nervous and I am always getting very little sleep. I usually hang a rope of small bells on the door so I can hear if it is opened.

I keep the bathroom light on for her too and sometimes bring an extra night light from home.

I also unpack her clothes when she is not looking and sort out the outfits on to hangers in the closet by days. I only present her with one outfit the morning of each day and that way we avoid the hassle of what she is going to wear.

Also we have had huge problems with packing her suitcase and leaving for Disney from her home. She has been use to packing everything for the entire family all her life and she gets so nervous before we leave.

We try not to tell her ahead of time and then we pack once, normally without her seeing and then lock the suitcase in the truck of the car and hide the keys! The first year we let her help and she unpacked the car and the suitcase seven times all night long. I was so tired and frustrated with her! She was in tears and so was I!

Thank you for your posts. These are the details I was looking for. I am seriously considering taking My Mom to Epcot for Christmas this year. She has advanced Parkinsons, and I know it will take much planning on my part. I can see how it is not much of a vacation for you! But you are making your parents happy, and that you will never be sorry for. Take care!

 

[THUNDERMOUNTAINMOMMA]

We are visiting Disney the last week of October. I am traveling with my DH, DS (age 2) and my parents. My mother is 66 years old and in the early - mid stages of Alzheimers. She is still fairly cognative, but needs help with some basic tasks, and loses her balance. She gets confused at times, and forgetful, but she is not to the stage of not knowing who she, or we are, or where we are. She is generally a very happy, fun loving person, and very, very excited to be going to Disney with her grandson (who is the apple of her eye). Needless to say, this will probably be her last trip to Disney (but let's hope not). We are staying at SSR. Does anyone have experience with traveling with someone with Alzheimer's at the parks? Suggestions or advice? It would be much appreciated!

OP- I don't have any advice for you, as I haven't attempted to take my Mom yet. But, enjoy this time with your Mom. It is precious. Have a great trip!