How do you handle embarrassing public moments

[Bete]

A little background: We travel with my Alzheimer's mom, who is 90, and she has some ailments, too. I do these trips to make memories together and to get out of the house. My mom is not a good respite candidate (there have been aggressive moments trying this out) and I'm an only child and childless myself; so, getting family help or other help won't work very well for me. We use a wheelchair on trips; although, she can walker herself around the house.

Trips have worked for us in the past and we do at least two a year. We just got back from a major trip out West by car. She had three bad episodes on that trip and it was a three week long trip; this has been our longest adventure yet. I didn't consider 3 outbursts really that bad. She is on a mood swing medicine. She will act out at home, as well. I feel the outbursts are getting stronger and lasting longer and are more frequent, now.

It's this last trip that has me scared some from taking other trips, now. In the past my mom was relatively decent in public, but on this last trip she had a few situations which were not pleasant. She did some screaming and she called a waiter a fat *** (excuse me for being explicit, here) in a restaurant. I apologized and the waiter got a very good tip from us and I also apologized to those sitting around me. This whole episode made me feel like I should do take out meals if I do another trip. I don't want to expose children to this problem, either. It could give them nightmares about their grandparents or whatever.

At Disney World I love the table service restaurants, but now I don't know what to do based on this incident on our last vacation. I carry cards that have an apology note on them and a slight explanation of her condition to pass out if I need to do it. I don't want to leave a restaurant once we have gotten started, either.

There was another episode on this last trip where she was screaming out the word help (one of her pet phases she likes to say over and over) at least 25 times in a resort in the late evening. This could have been construed as us harming her; because, she would say it louder and louder. I could not get to the bottom of the situation and calm her down. Usually, the word help means she wants something like a snack or a drink or potty, but not this time. She tired herself out and it stopped, but I never did get to the bottom of that situation. I do carry a doctor's note about her condition, but who knows in these situations if that would be enough for us not to be in trouble, here.

Anyway, the reason for posting is to see how you deal with similar situations (meltdowns and so forth) and whether this may be the time to stop vacations all together. My mom enjoys most of the trips even if she doesn't remember every detail. I would hate to pull the plug.

I know there are plenty of parents, here dealing with autism and such. What do you really do when the bad moments occur.

 

[minkydog]

Wow! You have my sympathy. It sounds like your mom is suffering from more anxiety now. Just being out of her comfort zone may be setting her off. You're probably going to have to evaluate this. It may be time to have some less stressful trips. There will come a time when she cannot tolerate the upset routine and that time may be coming shortly. I know it's one more thing to grieve. It's so unfair

 

[kerriemiller]

this sounds similar to what my step mother is going through with her mother. Grandma gets confused and has lost the ability to "think before she speaks" some of her interactions with us and even strangers can be salty and harsh. It is possible that your mother's out bursts on your resent trip were because at times when some one in their condition is out of their familiar envornment it becames harder for them to orient themselves to the world around them. There is nothing to spark a familiar memory and such. Before you do anything you should see what her doctor suggests. But it might be time to start shorter trips, over nights or day trips instead of all out road trips.

 

[buffettgirl]

the others have good tips - I just wanted to add, please don't worry about those around you. I think your apology is fine if it makes you feel better, but I really think anyone who would witness a 90 year old woman acting out would probably know that she must have dementia or Alzheimers. Even kids -it's ok for kids to see these things as long as their parents give them an explanation. Don't hide her if you don't want to - you're making memories for now, which is all she has. Don't worry about everyone else.

 

[disneymomjcs]

My heart goes out to you. It is wonderful you are maintaining the relationship with your Mom as difficult as it can be. When I am at Disney or anywhere I am always mindful of disabilities and illnesses. People really do understand and can unually tell if there is a medical issue or an elderly person who is seeming a little off. I think the note is a wonderful idea.

 

[Sadie22]

Acting out in an unfamilar environment and taking time to adjust to a new placement such as respite care or nursing home care is normal for dementia patients. Many of us have shared at least some of your experiences. There may come a time when it would be better for Mom to leave her in the care of those who are very experienced with dealing with Alzheimer's patients rather than subject her to the stresses of a different environment. You need your time to rest and recharge. Be good to yourself. Give yourself permission to use respite care without worrying about it.

 

[Carnie]

Acting out in an unfamilar environment and taking time to adjust to a new placement such as respite care or nursing home care is normal for dementia patients. Many of us have shared at least some of your experiences. There may come a time when it would be better for Mom to leave her in the care of those who are very experienced with dealing with Alzheimer's patients rather than subject her to the stresses of a different environment. You need your time to rest and recharge. Be good to yourself. Give yourself permission to use respite care without worrying about it.

I completely agree.

Dementia patients need structure and routine. Lower stimulation (visual, auditory, etc) is important.

It's the nature of the disease that causes the outbursts. As it progresses, it's only going to intensify.

Perhaps, if she enjoys small trips, you can take a scenic car ride and get some lunch, then head back home. Going to a familiar restaurant (especially one she may remember from years past, often dementia patients still have great long term memories, but are incapable of making new ones) may also prove easier, as it is a place she very may well remember.

I would imagine that taking her out for an extended time would only agitate her and exhaust you.

It's not about bothering the people around you, it's doing what your mom can handle and you both would enjoy.

 

[Bete]

with her outbursts/tantrums. Her outbursts really are NOT just connected to being in the outside world. She has tantrums at home, too. The difference for whatever reasons is that she actually behaved better out in public until now. I think she was less bored being out and about. I'm getting embarrassed about these outbursts especially since they are unfounded and not with good reason. When she swears or screams we get a lot of attention from those around us. She was never a swearing type person, nor are we. At home I have more of the day to day grunt work to do; so, mom likes it when we go on vacation; because, I can spend more time with her. She is not ignored at home, but she wants 24/7 attention from me and I think separation anxiety has a lot to do with her mood swings at home or out. She doesn't want to be left alone even at home in a room; she's glued to me.

I don't really want to quit the vacations yet; so, I'm looking for suggestions on how to deal with the public outbursts. I could leave the scene of the situation and run for the hills and find a place where her and I can hide; until, it blows over. I can't really reason with mom; so, I can't calm her down. I can try to find hidden, quiet spots at Disney. Maybe, I should schedule a big break in the middle of the day. I'm afraid of doing a mid day break; because, she gets worse as evening comes with her tantrums and I'm afraid we won't make it back in the park. I think her best hours are between 10 am and 6 pm. We don't really leave our room until 10 am anyway when we do Disney. Also, she is a sundowner type and I want her to be tired at night; doing a mid day break would not help this condition. Anyway, this is the type of advice I am seeking from those who deal with outbursts. I'm hoping for some hidden gems that can be shared that may help me with this issue. I'm an eternal optimist and I don't give up easily and I think we have a few trips left in us. Is there anyone out there that can tell when an outburst is ready to happen; do you see it coming? Like do you see it in their eyes or from the way they are talking or not talking? What do you do next?

I feel I have about another year left to do two more vacations and one being a major one to the East Coast with Disney World if I can pull it off. I want to travel in a triangle from Indiana and hit all the coastal states and those states bordering Canada. Our major trip in April included 13 states and 16 cities going West and back. We did have layovers with friends and relatives along the way.

I know the time is coming for us to stop vacationing, but until then I'm looking for any thoughts that can help her do better with the outside world and curb some of the outbursts before they start up.

 

[PlutoPony]

Are there any good Alzheimers / dementia support groups around you? I've found a good support group can be extremely helpful for talking through what's going on and suggesting solutions that have worked for others.

My mother has dementia that's been noticeably increasing over the past several years. I found her anxiety decreased SUBSTANTIALLY when I moved her into a very good assisted living center that only takes residents with dementia / Alzheimers. Once she was around people "like her", she was much more comfortable, her anxiety almost went away and she was clearly happier. The caregivers are very experienced and the facility has been designed with the needs of these diseases in mind. Mom is now able to function much more normally than she had been, even with wonderful care in other environments like my home and regular assisted living. This is clearly YMMV but wanted to share my experience.

Good luck!

 

[Carnie]

You can't control the outbursts. It's the nature of the disease.

It sounds as if you want to take these trips for YOU, regardless of how your mom can handle them.

There are no "hidden gems".

I'm sorry I can't help you further.

 

[myjourney]

You can't control the outbursts. It's the nature of the disease.

It sounds as if you want to take these trips for YOU, regardless of how your mom can handle them.

There are no "hidden gems".

I'm sorry I can't help you further.

Carnie, that is an unkind answer. She said her mom has these outbursts at home also. She also said she wants to create memories.

OP- I agree with the other poster about finding a support group, they may have some hidden gems for you. Bless you for taking such good care of your mom.

 

[LockShockBarrel]

I kind of agree with Carnie.

From how I've interpretted this thread, it seems like the OP is the only one embarassed by the outbursts and is only embarassed when it happens in public. The outbursts aren't going to stop, and if it's embarassing to OP, maybe it's time to not put themselves and mother in that situation anymore. I understand making memories, but it seems like you're reaching the point where all it's going to be is memories of stress.

I don't mean to sound unkind... just realistic.

 

[Carnie]

Carnie, that is an unkind answer. She said her mom has these outbursts at home also. She also said she wants to create memories.

OP- I agree with the other poster about finding a support group, they may have some hidden gems for you. Bless you for taking such good care of your mom.

I am not being unkind.

She wants to create memories? For her mom, who, clinically, really isn't going to be capable of making "new" memories (the harsh, cruel reality of dementia) or herself?

If the memories are for herself, she cannot change her mom's behavior. Trying to change these outbursts, in order to have a "nicer" memory of a trip, just isn't realistic.

This quote speaks volumes -

"I feel I have about another year left to do two more vacations and one being a major one to the East Coast with Disney World if I can pull it off. I want to travel in a triangle from Indiana and hit all the coastal states and those states bordering Canada. Our major trip in April included 13 states and 16 cities going West and back. We did have layovers with friends and relatives along the way."

Really? Dragging a 90 year old woman with Alzheimers through 13 states?? This itinerary would be exhausting to a HEALTHY 90 year old person, never mind someone who has dementia.

The OP speaks of sundowning, frequent outbursts, and limited tolerance for activity.

This is describing a person with, at the minimum, moderate dementia. Google "traveling with dementia". Not highly recommended.

 

[Mom2six]

I can understand your desire to keep traveling. You are certainly entitled to continue living your life while caring for your mother. You will have to make some tough choices, because the fact is that your mother's condition will impact what you want. As you have stated, your mother is not able to remain away from you while you vacation. So if you decide to go on vacation with your mother, you will have to alter your plans/style to accomodate her needs.

I understand being embarrassed, but try not to feel overly embarrassed. You are not doing anything wrong, and your mother is not to blame for having dementia. Try not to worry about other people. Most people have some type of situation that they deal with that makes them uncomfortable at times.

My son has autism and he sometimes has meltdowns in public. We try to help him cope, try to help him calm down, and I often have to leave the situation. I know you mention that you don't want to leave the restaurant once you've begun eating, and you've mentioned that you don't want to skip the sit down table service restaurants, but that your mother has had problems. This is one of the areas that you have to make tough choices and realize that caring for your mother will mean making sacrifices. This is no magic tip to make it all better - if your mom can't handle the restaurant, you will likely need to leave. I've spent many an hour waiting with my son while my family finished an activity like minature golf, or my DD's pageant, or a meal at the restaurant. It is what you have to do if you chose to take the risk of the situation. Sometimes it works out, and other times you leave early.

Is there any activity that helps your mom stay calm? My son can sometimes be distracted by game boy, or watching a movie while blocking out the world. I don't think you can do anything about the inappropriate comments except accept the situation.

Have you asked your mom if she wants to go on vacation? Good luck with whatever you chose, and any methods you use. Remember that you, your mother, and your family have a right to continue your lives.

 

[dclfun]

I wish I had suggestions, but mostly Bete, I really want to give you a big hug. I know you're trying to do your best for your Mom and I think you also really need to get out of the house for your own sake. Living with and caring for someone with Alzheimers who is glued to you and cannot be left alone has GOT to be one of the most stressful situations I can imagine. I would take the suggestion to find a support group, even if you only find one online that you can participate in. Someone living the journey would be more helpful than someone like myself who has no personal experience with dementia. I was in the hospital yesterday having my chemo when an elderly woman was yelling "help" and "Tommy" repeatedly. I'm not sure if she knew what she was doing but to me, it was very, very sad.

If I were you though, I'd try to find respite care for your Mom and then take a short weekend trip away from her. You really need to take care of yourself too. Even if your Mom is confused and acts out, people who have skills with that disorder will know what to do. You could even stay close enough to go back home if it were an emergency situation.

Unfortunately your Mom can't tell you how she's feeling and I doubt she remembers much of your trips even if there are moments she does enjoy. Was there a hobby she liked in the past, like gardening? Looking at magazines? Does she like for you to read to her? Maybe just spending special time with her at home doing something she likes would be enough to keep her and you from being bored. Even if she sat by you while you worked on a photo album or scrapbook might spark and old memory of happiness.

Whatever you decide to do, I wish you well. I know you are hurting to watch your Mom struggle. Alzheimer's and other dementias are horrible, horrible diseases that rob us of those we love the most.

 

[chloelovesdisney]

I'm very sorry to say, it does sound like it is no longer beneficial for your mom to be going on these long trips. Alzheimers robs the mind of short term memory, she will not recall these trips and it is probably confusing to her to be in a new place. It is also tiring to travel even when you are young and in good shape, at 90 and with health issues it is even harder.

Are there local places you can take her to that she has fond memories of from earlier years? Special places that you used to go to every summer, or for important occasions? I would try taking easy day trips to places she already has good memories of, and have her back home before dusk and the sundowning begins.

You sound like you have been caring for your mom with much love and doing your best. I lived for a period of time with a relative with alzheimers, it is not at all easy. This may sound strange, but do you have a pet? Pets can be very calming, it may be good even for yourself.

In terms of dealing with the public, if she is in an agitated state, I would leave and take her to a quiet, safe area. This is not for the other patrons of the restaurant or store, but for your mom's dignity.

 

[Bete]

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.

 

[Boiseboone]

First, huge hugs to you. What a caring daughter you are, and I can tell that you're one of those go-out-of-her-way-to-be-polite types too. Seems like that's getting a little rare sometimes.

I can't give you any advice about dementia issues, because I don't have any experience. But I will chime in that it's important for you to do what you think is best, because you know your mom and your situation better than anyone here. And as someone who is taking care of a person with dementia full-time, you need to think about what YOU need too. Good for you for taking steps to make sure your life doesn't stop despite the challenges you face!

But what I really wanted to say is don't feel bad about your mom's outbursts in front of strangers or kids. If that happened in front of my young children, I'd be glad to use it as a teaching moment for them - people are different, some people have disabilities and can't control the things they say, it's important not to judge, etc. I think (hope) most parents would feel the same way. Hang in there!

 

[CarolineB]

I don't agree with the poster who said something about "she's not going to have memories of the trip." The fact that mom isn't going to have memories of the trip is not what's important as I'm sure you feel. If this was the case, why would so many families bring their little kids to Disney (DS doesn't have any memories from the 3 trips that I brought him on when he was 2 1/2 to 3 1/2.) Before my grandmother passed away, she enjoyed visits and outings from me -- she knew that she didn't remember what we did the day before. I didn't care as long as she enjoyed the time that we spent together.

My suggestion for a trip to WDW with your mom would be to take your mom and if there is an outburt, consider letting her compose herself in the First Aid area. Even if it's just to sit in the lobby area until she feels better.

If you feel uncomfortable about outbursts in a table service restaurant then skip these this trip.

You can eat the same food as take out service in resort hotels. (I was at the Wave restaurant at the Contemporary Hotel a few weeks ago and was considering take out so DS could watch the outdoor movie -- I was told by the bartender that was no problem but that they automatically add an 18% gratuity which is the same I would tip anyway if I ate there.) We ended up eating there but it was nice to know, this was an option. They also have a seating area in the bar that it very casual so you could eat there without fear of disturbing guests in the restaurant if mom starts acting out. You could also ask for a box and the check as soon as you have received your meal so that you can make a quick exit if you need to.

Hugs and best wishes on whatever you decide.

 

[JennyDrake]

My former secretary and her family called for Grandma Edna who'd had Alz. for 14 YEARS. Edna was prone to the same outbursts (the 'n' word was a favorite as well as "STOP! You're hurting me!) as you decribe. Jessica would be quick with a smile and the word "ALZHEIMERS!!!" She said she had yet to experience anything other than compassion and humor from other people.
_I_ would not do only take out meals, but you could schedule sit down meals for less crowded times.
I agree with PP to also check with her Dr.
God Bless you in your care for her.