How do you handle embarrassing public moments

[CarolineB]

I went to EPCOT today and felt dizzy so I went to First Aid immediately because I was alone with a young child and didn't want to wait until I felt worse.

When I was leaving First Aid, I asked about bringing a guest to First Aid who has alzheimers and is having an outburst, the First Aid CM said absolutely and that they also frequently have people with autism using the First Aid area.

I was put in a semi-private room (no door and 1/2 walls) that had 2 beds but I noticed that they also have rooms with doors that close that might be better suited to your situation.

 

[Bete]

I will keep that in mind for outbursts.

 

[Sunnywho]

I have a friend whose father passed away from Alzheimers and he had bad outbursts and aggression by the end. Her brother took their dad to Japan because he'd always wanted to go but he got confused and aggressive during the flight over and was shouting at the airport in Japan that he'd been kidnapped. So, at least you're not taking your mom out of the country!

Anyway, it's reasonable to minimize the time spent in places where you can't stop what you're doing or leave to deal with outbursts. Counter service doesn't have to be burgers and fries, especially at Disney, there are some good options.

At some point she won't be able to travel anymore, and it will be obvious when that time has arrived. Until then, if you can handle it, I'd say go for it.

 

[Bete]

I have a friend whose father passed away from Alzheimers and he had bad outbursts and aggression by the end. Her brother took their dad to Japan because he'd always wanted to go but he got confused and aggressive during the flight over and was shouting at the airport in Japan that he'd been kidnapped. So, at least you're not taking your mom out of the country!

Anyway, it's reasonable to minimize the time spent in places where you can't stop what you're doing or leave to deal with outbursts. Counter service doesn't have to be burgers and fries, especially at Disney, there are some good options.

At some point she won't be able to travel anymore, and it will be obvious when that time has arrived. Until then, if you can handle it, I'd say go for it.

Someone in our support group did have an ocurrence on a trip where the mother claimed her daughter wasn't her daugther. She had a doctor's note; so, it worked out in the end.

I would never try to go to a foreign country with my mom. We drive on our U.S. trips and that's a safety net. If our travels just got worse day after day then I would turn back and go home. We will not stay on Disney property this trip; so, all my reservations can be pretty much cancelled. I won't buy tickets in advance, either. If it comes down to it, hubby and I can take turns watching my mom whereever and the other one can enjoy a park or whatever for a while. If she misses a few sights it won't matter to us or her. She'll see some of it and that's enough for all concerned. I feel we have gotten very good at knowing my mom's limits when travelling. Anything can trigger her outbursts. It's not related to being home or not. It's not related to what we are necessarily doing, either. The only consistent outbursts we get from my mom is that she doesn't want to take a shower/get cleaned up.

I will cut back on my Disney table service restaurants and do more quick service places as suggested by others, here. If I try a nicer restaurant it will be off site where hopefully it won't be as crowded or easier to exit if necessary for all concerned.

My mom likes chocolate; so, I might try giving her some on the trip if she gets out of hand. The only problem with doing this is she is smart enough to realize she can get more chocolate by doing more outbursts. She likes desserts, too. I'll experiment with a few ideas. I'll report back if anything consistently works for her.

Thanks all for your responses.

 

[hereyago]

First hugs to you on being a caregiver, it isn't an easy job and I hope you are taking time for YOU so you don't get burnt out.

You must know that dementia/alzhiemer's are like invasion of the body snatchers you see this person you used to know but they are a very different person.



I would the second say "alzheimers" if she acted up. but you also have to understand that you don't want to give in to it, but it has taken her it sounds like. and you as a caregiver have to come to terms with it.

You don't have to travel to create great memories, you can enjoy the time you have left with her.

I am sure you want to know in the end you did the best and things she would have wanted, but you also are now seeing that perhaps what the old her would have wanted and the new her can no longer handle.

 

[smidgy]

when I worked in activities at a nursing home, back in the 70's we really wanted the residents to enjoy themselves. turned out, what WE thought thye would enjoy, was not the same as what THEY enjoyed.
..there was a field trip to the zoo. I really thought some of the dementia patients (this was before we ever heard of alzhiemers) would enjoy the trip...

boy! was I ever wrong! it was a little fun, then scary, then fun, then weird. not fun for the residents, or the other zoo guests, or us.

people gave us dirty looks, for trying to "coerece" the residents to get on the train, to seethe animals. a few screamed out that we were killing them, not letting them eat, hurting them, and screaming tha tthey really didn't WANT to see the dolphins!!!!!

when my beloved daddy was in a home (he died just this last sept.) I wanted SO BAD for him to know what I KNEW he KNEW!!!!! sadly, he didn't.......


OP, the most scary thing you can do for your loved one is put them in a situation where they can't remember, there are crowds, strangers, and they are scared... you aren't doing them any favors, or creating any "memories"

 

[Bete]

when I worked in activities at a nursing home, back in the 70's we really wanted the residents to enjoy themselves. turned out, what WE thought thye would enjoy, was not the same as what THEY enjoyed.
..there was a field trip to the zoo. I really thought some of the dementia patients (this was before we ever heard of alzhiemers) would enjoy the trip...

boy! was I ever wrong! it was a little fun, then scary, then fun, then weird. not fun for the residents, or the other zoo guests, or us.

people gave us dirty looks, for trying to "coerece" the residents to get on the train, to seethe animals. a few screamed out that we were killing them, not letting them eat, hurting them, and screaming tha tthey really didn't WANT to see the dolphins!!!!!

when my beloved daddy was in a home (he died just this last sept.) I wanted SO BAD for him to know what I KNEW he KNEW!!!!! sadly, he didn't.......


OP, the most scary thing you can do for your loved one is put them in a situation where they can't remember, there are crowds, strangers, and they are scared... you aren't doing them any favors, or creating any "memories"

First, we are one on one with my mom when on trips. I think that makes a big difference. My mom still knows us; we are not strangers to her. We ask her if she wants to do whatever each day. If she says no then my hubby and I take turns watching her while the other one enjoys the activity of the moment. She has been out and about most of her life and I think staying home now actually bothers her. She's restless.

My mom's outbursts are not I repeat not related to being outside the home. If anything her outbursts are worse at home and more frequent at home. She's bored at home. She even suggests going out for a meal here and there to get away from the home. The outbursts are not from what I can tell related in anyway to being scared. She always feels protected when I'm near no matter where we are or what we are doing. Where we are has nothing to do with her outbursts. I'm her security blanket to a degree and she's happy as long as I'm nearby. Her worse moment was in a rehab center back in last December when I wasn't there at her side. I won't go into those details, but that was horrifying for her and me. That was the beginning of this horrible mess now. She was traumatized there and she hasn't recovered from that experience and she probably won't from here on out. Something snapped that time and I've been struggling with these mood swings ever since that time in December 2011. I was not able to get to the bottom of that situation; so, I will never know for sure.

We will all have to agree to disagree on this path and we each have to find our own answers in this regard. I appreciate both sides of the coin here. I'm willing to hear it all. I know my time is short with doing any more trips, but I still feel we have a few more we can do before we stay home permanently. On our last trip she had 3 bad times over a three week period. Honestly, this is much better than home.

I was hoping for some distractions that might work for others who would share them for calming her down during some bad moments. This was the purpose of starting this thread. I know I need to find a quiet place at times. I know candy will work here and there, too. I think even a hug might do it at times.

 

[PebblesMK]

First, both my mom and I have always had the attitude of living life to the fullest. My mom could not afford trips when she was younger and she does enjoy these trips. We take each day very slowly. For example, we may drive 5 to 6 hours a day and that's it from place to place. We will have layovers where we stay put for a few days, so, we can recharge ourselves and enjoy the sights. When visiting sights like Niagara Falls (part of a bucket list) we will do it no more than 3 or 4 hours at a time. We don't over do. Heck, mom doesn't even want to take a nap. She's taking it all in even the scenery as we drive along our merry way. Hubby and I are retired; so, it's not that hard to travel for us. He's a great help to my mom and me.

My mom does not want to rot in a chair watching TV or anything similar to it. She actually does exercises every morning for about 20 minutes with a rest after 10 minutes. We check her oxygen level and pulse while we do this with her. If it wasn't for balance issues she could probably walk without a walker. We read her blood pressure each day, as well. We quiz her everyday to make sure she remembers where we live and who the Governor is in our state, who the President is, what day and date it is, and we do some memory games on I-pad and simple arithmetic problems, too. The I-pad has been a great help to keep her mind stimulated. She does not want to give up on life and she likes doing all the above. I believe this has allowed her to be with us longer and in a better way. We do all of this on trips, too. Her routine to a large degree is the same; except, we are not at home and we do a little more activity, here and there. Ever hear, home is where the heart is?

We do have a dog and she's 12 pounds and we take her on our trips. I'm in a support group for Alzheimer's, but most everyone is dealing with their loved ones in earlier stages; so, no one can really relate to me yet. This is one of the reasons I tried here for suggestions. I am going to a seminar this month for two days (only 2 hours at a time) for late stage Alzheimer's and I'm hoping to understand more from that seminar that may help me here with these outbursts. If the outbursts were only related to taking trips, then I wouldn't take trips.

We take a family trip each year to Chicago and Green Bay. We do activities and visit family and friends on those trips.

I don't want to give in to this disease, nor does my mom. Everyone has to make their own choices for their loved ones. I want the next year to be a grand finale for major trips for her. We will continue to probably do some family trips to Chicago and Green Bay, but not as often. I do understand this has to come to an end, but as I said I think we have a few more trips left in us.

Thanks to all who responded.

First off, taking care of your mother takes a tremendous amount of love, dedication and most of all, patience. For that, I applaud you.

I may have missed how advanced she is with her Alzheimer's, but from the bolded part, it must be early stages, as those in late stages wouldn't be capable of communicating efficiently, nor would they be able to recall things like time, date, governors. If she's in early stages, I can understand traveling with her as long as her other health ailments aren't too severe. In that case, slow is the way to go. Though I do question the road trip aspect. It would be much easier on her to fly to your destination and explore. Or even better, save your lengthy travels for later in in life and focus on places close to home.

I see some people saying that she'd be better off at a home, and while that may be true in some cases, definitely not all. My grandma had late stage alzheimers when we took her to Disney World. Many of her days ended early and she had a few moments of confusion and also "meltdowns" where she wanted to leave or didn't know where she was. We were in a group of 16 and somebody would take her back to the room. My grandma had no recollection of the visit, but we made some great memories that involved her. Not only that, but my grandma absolutely loved kids and had an absolutely joyful time watching her grandchildren and all the other kids that would go by her. Those smiles and laughter will always be with us and worth the small problems we encountered.

There is no magic way to deal with your mom's outbursts other than to smile and say "Alzheimers!". There's no reason to be embarassed by it. Don't put her in situations that may be stressful for her- even if that means you have to miss out. She only has limited time left, where as you most likely have a great many of years left in life. Go at her pace.

 

[LockShockBarrel]

PP..I very much disagree with flying. Anyone with an issue that causes outbursts is better off in a situation where they can...even temporarily... escape what is causing the distress. On a plane youre talking about close quarters,where others won't have the option of getting away from the situation and where a flight may end up diverted for an emergency landing then causing a couple hundred other people a lot of stress. If a flight crew thinks its enough of an issue, Idont think my scenerio is that fantastical, particularly if someone is going to be put in harms way. Im sure this is going tocome across sounding selfish on the part of my proposed "normal folk" but look back on the advicegiven here, that Op could take hermom out of a restaurant or go to first aid to calm down. These arent options on a plane. Driving may get you to a destination slower but it also affords you the opportunity to turn back or stop if the need arrises.

 

[smidgy]

good luck to the OP. you are a good daughter, it isn't an way job.

 

[wishicouldgomoreofte]

Bete, I am so sorry. God be with you and your mother.

 

[Bete]

My mom was in a terrific mood (at home) and it was very pleasant being with her.

I feel so blessed when we have a good day. She was talking quite a bit and making some sense.

 

[PrincessSuzanne]

My suggestion is to watch her and when you notice an outburst, see what it's attributed to, Is it because she got tired? hungry? Is there something specific that triggered it?

My grandmother had a fast progressing Alzheimer's, she went downhill very fast and passed away after probably 18 months, maybe 2 years, I can't remember exactly.

The majority of her outbursts were at bedtime, specifically when it was actually time to go to bed. She would ocassionally had a moment when my mom got home from work and I was serving dinner, she told my mom some really outrageous stories about what we had done during the day. There was one specific commercial that would upset her, a phone call from a friend would sometimes upset her. I don't recall her having any outbursts when we did take her out, though.

Unfortunately, unless she had a doctors apointment, my grandmother wasn't able to leave the house, it was just too difficult to get her in and out, because she was dead weight and had to be lifted and it was just my mom and I to care for her. I did get her up every morning and she would sit in her favorite chair and watch her shows.

I certainly wouldn't stop taking her out as you do, because there will come a time when you won't be able to go and you need to go until that time comes, that's what we did, but there did come a time we had to stop going out and that was difficult. My mom and I would take turns, as you and your husband do. I would have the note form the doctors, so if someone did approach you, you have some proof.

You have my sympathies, it is a cruel disease. I hated losing my grandmother, we were very, very close, but I knew she was no longer suffering. She sometimes had this look like she was trying to cry out for help, but the words wouldn't come out, like she was trapped and no one could hear her.