Would you go with an Alzheimer's parent?

[Bete]

I have an 87 year old mom who is in the middle stages of the disease. She has outbursts that can be embarrassing and she can get outright mean at times. She will cool down pretty quickly but there can be sparks for a few minutes. There is no real way of anticipating what will set her off. Normally, she is homebound. She has had some physical limitations, as well, as of late. I will need to do a wheelchair for her and I will be the pusher; I'm 56. Hubby who is 70 years old will be scootering himself. My mom never learned to drive and she would never do a scooter and I'm not sure she could anyway.

My mom has never been to Disney and I have longed for her to go there. I feel if I don't do it in the next year or so it will never happen. I've been to Disney too many times to mention and I wanted her to see what I have loved about it all these years. She has COPD but has not been hit by any biggies like cancer, stroke or heart attack. She does have a blood clot which is helped by a filter. She has mobility issues with arthritus. Her hearing and seeing are pretty good. There are a few other issues I will not mention, here.

I would probably eat at food courts or counter service most of the time; so, we could go with the flow of her moods. We would take it slow and easy. I would probably be well satisfied with 4 to 6 hours at the parks each day. If we had to skip a day, we would do so.

I plan on doing some activities to get ready for the Disney trip like going to the zoo locally, etc. This way I could determine her mood swings and see how I like pushing a wheelchair, etc. I'm planning on some weekend trips to nearby states this year and next year to visit family and friends with her. We go out to eat with her occasionally and she's pretty good at restaurants, but I have had a few choice moments in the process even doing that outing. I feel a little uncomformatable for those nearby like I'm intruding on their good time. Should I feel uneasy? Should I put my mom through this at this stage? I want to lift her mental attitude and mine for that matter; so, I thought this might be worth a try.

I wanted to get some opinions, here. Am I expecting too much from my mom with taking an ambitious vacation?

 

[LindaDVC]

I say go and enjoy the time
Don't worry about what any one thinks -- enjoy making memories which is what disney is all about!

You sound like you have appropriate expectations.
You plan to go with the flow, be flexible and shorten the days as need be!

You can talor the trip the way you all feel -- if over stimulated you can find quieter things to do like enjoy the gardens and countries of Epcot, animals at AK, ........... etc!

Linda

 

[toocherie]

I took my Mom and Alzheimer's Dad to the Olympics in Salt Lake City in 2002. It was a challenge but worth it. One thing I did do is that we hired a senior care assistant/sitter a couple of times to let my Mom and I go to events without him. You might check to see if there is such a service in Orlando--just for a break. That was my Dad's last trip and I'm glad we took it.

 

[PrincessSuzanne]

I'm sorry, I didn't read your whole post, but I just wanted to say take her and enjoy it. I now regret that my grandmother didn't get a chance to go. Mom said she could have afforded for us to go, but she was tight with money and thought it was too expensive. She has been gone 7 years now and I still think of her every time we go.

She had Alzheimers and hers developed and progressed quickly. You wouldn't believe (you probably would) some of the things she would say about me to her friends that would come visit. I was her caretaker for about 5-6 months and that was a tough time. After just a couple of months, she wasn't able to get up and move around and that was a blessing, because I believe she would have wandered away, like you hear about some Alzheimer's people do. We couldn't have taken her to WDW in that condition.

I certainly hope she is looking down when we go and having a great time with me. Go ahead and take her, you never know how long you will have with her.

Suzanne

 

[Ms_Butterfly]

As long as the outbursts aren't violent ones that threaten others, take her!!

My grandfather (95) just died on Sunday and I miss him terribly. Thankfully, I know he's in heaven and I also have lots of nice memories to look back on. (And, yes, he'd been to Disney World at least twice in his life [I have photos of us all there when I was little and I also remember my grandparents being with us there one time in the mid-90s. I don't know if they went at other times or not, but I was the one who made the photo montage video for the wake today and one of the photos I included was of us at Disney.)

So, while you can, make some memories. And give your mom a hug!

 

[ireland_nicole]

I empathize with your situation, I have been in a similar one as well. This long goodbye with your mom is a very painful and poignant process. I hope that you are able to go, but I would encourage you to ask yourself a couple of questions. Does your mom want to go? In her"good" moods, is she excited about the idea? Has she liked other "theme parks" in the past? I know WDW is "different", but if during the rest of her lifetime she hasn't enjoyed the activity and noise, etc. I don't think she'll enjoy it now. I understand that this is your dream, and I hope it comes true, but if it's not "her" dream, consider what her dream might be in the time she does have. Enjoy her good times. Remember them, every moment is precious, as I'm sure you know. You have my support.

 

[Mskanga]

My mother is in the last stages of alzheimers and usually alzheirmers patients have a difficult time adjusting to new places , things and routines. If you are taking your mother there so she can see what you have enjoyed all this time , you may be setting yourself up for a stressful disappointing vacation. I suggest you talk to her doctor and see what he /she advises.

 

[mickeyluvr004]

We are taking my grandmother whose 83 almost 84 in Sept. She has dementia (still unsure how that works) unsure if its early alzheimers or what? anyone know what the first symtoms are?? but we are taking her and can't wait as she has 2 great granddaughters that want to show her the ropes everyday they tell her we are going and she is like really when are we going? but anyway i see it as a memory making trip. lots of pictures with the characters and the girls, I say GO and make the best of it we are

 

[belle&beast]

My grandmother had Alzheimer's and we would never have tried to do anything out of the routine for her. Just short car trips to unfamiliar places caused so much anxiety that she could never relax and enjoy herself. Spending the night in a strange place can be very scary if she wakes and does not know where she is. Plus, if she experiences the sundowner affect, you may have very difficult evenings and nights.

Every person is different, so you have to judge what would work for your famiy, but in my personal and professional experience (I am a speech pathologist and my first job was in a long term care facility) people with dementia have a lot of difficulty adjusting to a new environment and WDW is extremely overwhelming.

 

[Bete]

I'm with my mom all the time; so, I've become her security blanket. Infact, for 15 years she lived with us in our apartment building in Chicago. She had her own flat but her shopping, meals, etc. were with us. She never learned to drive; so, we were her chauffer forever. The last 15 years have been in a home with us in the country in a smaller town in Indiana.

I feel as long as I'm right there she adjusts pretty good to new situations. We have ventured out for lunch when we go for doctor visits, as an example. My mom's mood swings happen whether she is in familiar territory or not. Some of her outbursts are swearing and screaming out for help even though there's no need for help; it's like a defense mechanism with her. She does this when she doesn't want to do something like bathing, etc. She lets you know real fast if she's not happy about anything this way.

Two years ago when my mom was not as bad (early stages) we took a two week trip away from home visiting two, neighboring states to visit family and friends. We did stay at a resort for 2 days along the way and she did ok with that experience, but it was with early stages of the disease. She had a few episodes at my MIL's house where we stayed the longest, but we survived. We were able to visit her older friend in a Chicago suburb and she was really happy about that experience. I plan on repeating that trip before we venture out further to Disney or anywhere else. I want to go to Dollywood and other places in Pigeon Forge for a shorter trip before we try Disney. I will be building up for the big event to Disney. If she doesn't take well to these other events there's no way I will go to Disney. I will take baby steps first and keep building to see if this will work or not over the next year or so. We will be trying daycare locally for her to give me a break and see how she can adjust to that situation. She's recovering from an ordeal right now; so, I haven't tried this yet.

One of the reasons for me trying all of this is I feel my mom is getting very depressed. Her family physician doesn't really believe she would be helped at this stage (her age is a factor, here) with any pychiatric help. I don't think changing doctors will change this, either and I think it would be very difficult for her to start over again with a new doctor. She's not even on a happy pill for being depressed. I'm not looking to reverse her conditions; I know that will not happen. But maybe, just maybe, to be able to accomplish some if not all of these trip plans may make her realize she can still venture out of the house and possibly even enjoy herself.

I don't like labels on any diseases and I think far too often we want to hide Alzheimer's from the world. I'm a baby boomer and I know my time will come facing all these issues. I think we need to strive towards new, better answers then what seems to be currently available for Alzheimer's. I won't do it if my mom gets too hyper and stressed out. She has avoided any of the big three--heart attack, stroke or cancer. I'm not about to cause problems over taking a trip. I think a big secret to all these trips is to make her feel like it's easy and not a strain on anyone doing them.

I'm somewhat determined to try outside avenues with her and this is not just for me. It might give my mom and I a good connection to each other if we go to Disney together. I know the place inside out; so, I feel this is a great place for us to try a farther away vacation. I think I may stay offsite; so, we could cancel and not pay for an entire resort stay if it doesn't work out for us. Also, I think using our car is a better idea everywhere; so, we can avoid crowded Disney transportation or make a quick exit if necessary during a mood swing, etc.

The debate to seclude and isolate Alzheimer's patients in my opinion has not worked out very well. I feel they drift further and further away from reality that way. Will all of my ideas work? Probably not, but it doesn't mean we shouldn't continue to try new ideas and venture out a little more.

If my mom's health gets worse there's no way I will venture out. It's the reason why I think this is the time for me to try some newer ideas.

 

[videogal1]

Just returned from a trip to celebrate Mom's 80th birthday. She's living in an assisted living center where she complains all the time about her fellow "inmates", the food, the staff, etc, etc...I took her a few blocks away to a nice inn, planning to spend a few quiet days lounging around, eating out, reading, and a surprise party.... The first night she announced in no uncertain terms that she wanted to go back to the center. My vacation was spent staying with her surrounded by gray-haired "crazy people"as she would put it. My advice is if you take her to be prepared for the sensory overload to make her want to run and hide. Remember, you're not taking her as she was...but as she is...I'm sure you know by now.

 

[leebee]

My great aunt had Alzheimer's. In the mid-stage, sometimes she'd wake up in the night and not know where she was. She'd go into the other room and wouldn't recognize where she was, or whose stuff whe was surrounded by. It was very, very frightening for her when this happened, and sometimes would precipitate serious outbursts. This was when she still recognized all of us. I would be very, very careful about taking a person with Alzheimer's away from home. I think it's a good idea to try several trial runs, and to think about whether it's really a good idea to plan such an ambitious trip. It sounds like you have a good grip on your mother's abilities and limitations. Unfortunately, Disney might not lift her spirits and make her excited about things- it might frighten, confuse, and frustrate her. Good luck with whatever you decide- it's not going to be easy.

 

[BroganMc]

The debate to seclude and isolate Alzheimer's patients in my opinion has not worked out very well. I feel they drift further and further away from reality that way. Will all of my ideas work? Probably not, but it doesn't mean we shouldn't continue to try new ideas and venture out a little more.

If my mom's health gets worse there's no way I will venture out. It's the reason why I think this is the time for me to try some newer ideas.

Wish I could answer the debate for you Bete. Truth is there's no easy answer to this. I looked after my grandmother and mother in the twilight of their years. Their issues were more physical than mental however (grandmother had severe arthritis and hearing loss, died at 87; mom had metastatic breast cancer, died at a too young 67). Now I've got my still active though widowered 76 dad to look after.

Depression goes hand-in-hand with chronic progressive disease and isolation. (Having JRA since age 2, I've battled my own despair demons.) I'm more a fan of "changing the scenery in the mind" than drug therapy.

It is possible to take someone with dimensia to Disney. An aunt of mine took her husband's elderly aunt wherever she went. Of course it meant pushing her in a wheelchair and putting various monitors on the door to keep her from wandering. She was not violent, but frequently didn't know where/when she was.

Anyway, I just wanted to say how nice it is to hear that you want to help your mom. Too many adult children abandon their parents in old age or sickness. It's never an easy job, always heartbreaking, and one of the most worthwhile things you'll ever do.

If it proves she's just not up to the travel, you can still find other ways to get her out of the depression funk. When my mom's cancer kept her from being to go out of the house, I brought in all sorts of movies and activities. We'd relive memories via photos and home videos. I played cards with my grandmother (and let her cheat). And most of all I just listened to all their stories of their lives. I still treasure those times and miss them terribly.

Good luck to you and God bless!

 

[Charleyann]

I have an 87 year old mom who is in the middle stages of the disease. She has outbursts that can be embarrassing and she can get outright mean at times. She will cool down pretty quickly but there can be sparks for a few minutes. There is no real way of anticipating what will set her off. Normally, she is homebound. She has had some physical limitations, as well, as of late. I will need to do a wheelchair for her and I will be the pusher; I'm 56. Hubby who is 70 years old will be scootering himself. My mom never learned to drive and she would never do a scooter and I'm not sure she could anyway.

My mom has never been to Disney and I have longed for her to go there. I feel if I don't do it in the next year or so it will never happen. I've been to Disney too many times to mention and I wanted her to see what I have loved about it all these years. She has COPD but has not been hit by any biggies like cancer, stroke or heart attack. She does have a blood clot which is helped by a filter. She has mobility issues with arthritus. Her hearing and seeing are pretty good. There are a few other issues I will not mention, here.

I would probably eat at food courts or counter service most of the time; so, we could go with the flow of her moods. We would take it slow and easy. I would probably be well satisfied with 4 to 6 hours at the parks each day. If we had to skip a day, we would do so.

I plan on doing some activities to get ready for the Disney trip like going to the zoo locally, etc. This way I could determine her mood swings and see how I like pushing a wheelchair, etc. I'm planning on some weekend trips to nearby states this year and next year to visit family and friends with her. We go out to eat with her occasionally and she's pretty good at restaurants, but I have had a few choice moments in the process even doing that outing. I feel a little uncomformatable for those nearby like I'm intruding on their good time. Should I feel uneasy? Should I put my mom through this at this stage? I want to lift her mental attitude and mine for that matter; so, I thought this might be worth a try.

I wanted to get some opinions, here. Am I expecting too much from my mom with taking an ambitious vacation?

My mom has this dreaded disease and she is only 63 years old. she has had it since her early 50's!

I too wish I could take my Mom. Thought of it and thought of it. I know in my heart she would love it, however she wonders when she isn't "home" which is a nursing home. My child has a fatal/ life threatening illness and feel it would be too much for me.

Oh how I long to take her. I pretty much lost ,my entire family in the past four years. My Dad age 67 to Cancer in July 17/04, My mom went into major alzheimers and lost all knowledge of her children and her life when dad died. She is here in body only! My only brother was killed in a Tornado last August 3rd and my Mom doesn't know he is gone. My child is sick and Disney makes me feel so much better. How I long for my Mom to feel the magic and maybe have a few lucid moments and to enjoy the moment!

My mom went downhill so fast with the death of my dad. If you can, take her and favor the moments....

Charleyann

 

[aurora23]

I think it is a really hard decision. I think your idea to try smaller trips first is a good idea. I have had two grandparents with Alzheimers disease and both reacted to situations differently. One grandparent would have outbursts, and turn mean and become paranoid (Before the disease she was a very sweet and kind woman). She became afraid of us abandoning her and would call at all hours of the night. The other maintained her good nature, but would become restless even at family gatherings and would want to go back to the "safety" of her home after a nhour or so. I think it may be possible to take her, but the question is would she enjoy Disney and for how long? Disney can be stressful for anyone. Additionally, you may want to consider how long you are waiting to take the trip. An Alzheimers patient can go down hill rapidly in a short timespan. I really hope you can go and it all works out for you. I just wanted to throw some things out there for you to consider. Either way your mother is lucky to have a child like you. You really seem to care about her. Best of luck.

 

[mechurchlady]

The bottom line for me is several things. Would she be happy or would she be dazed and confused? How does she react to new things? Does a trip to Wal-Mart mean you stressed out and not wanting to take her again?

I wanted to take my mother on a trip to San Antonio but I would have to get a state ID for her which would mean a lot of fights and stress. She would only do motorhome or Amtrak. I would be worn out caring for her and worrying about her. Bottom line is she stays home.

What is your bottom line? I would take her if she would have a good time, not be wandering off, not be having melt downs constantly, or otherwise totally ruin the vacation. It is hard when you have to leave someone at home but you have to think about your family and what is best for her. Good luck on your trip.

 

[Bete]

My mom has this dreaded disease and she is only 63 years old. she has had it since her early 50's!

I too wish I could take my Mom. Thought of it and thought of it. I know in my heart she would love it, however she wonders when she isn't "home" which is a nursing home. My child has a fatal/ life threatening illness and feel it would be too much for me.

Oh how I long to take her. I pretty much lost ,my entire family in the past four years. My Dad age 67 to Cancer in July 17/04, My mom went into major alzheimers and lost all knowledge of her children and her life when dad died. She is here in body only! My only brother was killed in a Tornado last August 3rd and my Mom doesn't know he is gone. My child is sick and Disney makes me feel so much better. How I long for my Mom to feel the magic and maybe have a few lucid moments and to enjoy the moment!

My mom went downhill so fast with the death of my dad. If you can, take her and favor the moments....

Charleyann

I cried when I read your post. My prayers are with you. My problem seems so small by comparison. I think people are shocked into Alzheimer's like when your dad died and your mom had a strong spiral downward that way.

I had a hard day with my mom yesterday and I would say no to Disney based on yesterday's outbursts. I couldn't be with her as much and I think that took a toll on her. We are trying to help my MIL (90 years old) long distance on making some life changing choices herself and we were on the phone with all the bros and sisters; so, I couldn't devote myself to my mom as much yesterday. It sure made a difference not being with my mom more.

I will continue to debate this issue for a while. I know the longer I wait on this the harder it will get to do it.

I really appreciate everyone sharing their thoughts. I even got a few privates messages and I thank those individuals, as well.

 

[DisOrBust]

You could try doing a nearby overnight stay and see how that goes? Is she on Aricept? Some patients have good results with it's use. As far as a "happy pill" you need a really good MD that knows what does and doesn't work with this diagnosis. Have you ever thought of seeing another MD without your mom along, a "paper consult"?

 

[Bete]

My MIL took ill and after a hospital stay she is spending time in a nursing home, right now. She is 90 plus. My hubby does help at home and it's hard for him to go alone anywhere; because, he's diabetic. He's had a few very low blood sugar levels and one incident caused a small car accident; so, I prefer if he doesn't travel alone. We will be staying in my MIL's home while we are there. My mom was there once about two years ago.

Anyway, we started to get ready yesterday and my mom already has high anxiety about it all. We leave tomorrow, Thursday for an eight hour ride. I've asked the doc for some anti anxiety drugs today and I'm still waiting word on this being good or not for my mom. I think this will be a good test to see how my mom will react about it all. I'll keep you all updated.

 

[Minnie&Nana]

Bete, my thoughts and prayer are with you as you make this difficult, but oh, so loving, decision.

I've not got any more helpful thoughts than others have offered, except one: the 4 to 6 hours per day you mentioned in the parks sounds very long. We never go for more than a few hours at time, 6 would be unusually long even for us. Just thinking of the stimulation overload for her. If you decide to give the trip a try, perhaps it might be worth considering very short periods at a park?

Perhaps a stay at a monorail resort (low lighting, relaxing resort like the Polynesian with large rooms, if possible?). Book room only, rather than a pkg - I am sure the resort would not charge for the rest of the stay if you had to leave early and explained the circumstances. Also, go for not more than 4 ngts, so as not to stretch her tolerance level for all the new experiences?

As I type this and think of your dear mother my heart aches for you. Disney is such a wonderful place, but it is very busy with all kinds of new noises, music etc all the time.

Sending loads of heartfelt prayer and good thoughts.