Going on a trip and need advice.

White Crane

It's been awhile since I've posted.  I've been depressed and just haven't felt up to it.  I have been reading all of your posts though and am praying for you.

Our grandson is getting married in a week in Indiana.  We live in St. Joseph, Missouri.  Our daughter and her husband are flying in From Boston on Monday and renting a mini van.  We are going to ride with them to the wedding.  I've made the hotel reservations and have been talking to DH about the wedding for months.  He still doesn't really know who is getting married or why we are going.  Our grandson wants us at his wedding...and I want to be there! 

 This will be the first trip we have taken in a long time and the first time for me to have to pack for my husband.  I guess the bottom line is I'm worried about how he is going to react to staying in a hotel; how to manage eating in restaurants on the trip...DH is lost when he looks at a menu and thinks everything should cost a dollar or two;  he keeps refusing to try on the clothes he will be wearing to the wedding and the rehearsal dinner so I can see if they still fit; how he is going to do on such a long car trip.  I'm about to cry just writing this.  It's all on my shoulders and right now my shoulders don't seem big enough.  Oh, and I am hoping to arrange for him to see at least two of his sisters who live in Indiana while we are there. 

 With alzheimer's even a trip to the grocery store with DH is stressful.  How am I going to take care of him and also take care of me?  I love our grandson so much and want to be at his wedding!  This whole thing has me stressed and tired.  How have some of you managed on a long rode trip and staying in hotels?

 Brenda

toolbeltexpert

Brenda I understand about even little trips are stressful. And everything that is on you. I cannot even fathom a long trip. I stress just thinking about it. So much in life has to go to the wayside because of this terrible disease.  I'll be praying for you.

Quilting brings calm

Don’t stress about the clothes.  If his ‘dress’ duds don’t fit or he balks at putting them on that day, then just put him in comfortable clothes. Grandson wants you there, he has  to accept some  compromise. Accept that you will be leaving the reception early.  Probably minimizing other socializing so that you can be at the actual wedding

grmajo

Brenda, I'm with you on the stress of traveling. I agree with the comment about the clothing. Let go of that one. When we eat at a restaurant, I preview the menu if possible. I usually suggest 2 options for my DH that I think he will enjoy. An entire menu is way too much for him to scan. Take a lot of breaks on your drive. Be sure to have music he enjoys. Do you have the business card that says "Please be patient"? It might be a good idea to share with people at the hotel. And be good to yourself. Lower your expectations for your DH and make some happy memories for yourself with your family. I hope they are all aware of your struggles. Wishing you the best!

Lills

Of course, each Alz. patient may react differently; I only have experiences with my DH.

On Christmas, 2017 I took him to my sister's home (4 hours away) to spend Christmas weekend with my family.  DH and my family are very close and we've been at her house a million times over the years. After an hour, he started to cry, walked outside to our car and wouldn't come back into the house; temperature was -20.  We drove straight home to MN.  

The following summer, I took him to Grand Marais (5 hours away).  We'd gone to the same hotel for 40+ years, and it was just the two of us.  Again, he started to cry after one night and wanted to go home!  

Once, I tried to take him to get a MN ID--he bolted outside.  We left all the paperwork unfinished on the counter,  (Just as we were pulling out of the parking lot, I saw the clerk was outside waving at us. She had brought with her the paperwork and stood next to the car as I completed the application--what an act of kindness!)  

So, I could no longer take DH on any outings.  I could take him to the grocery store if I only needed 3 things, PO if there was no line and chocolate store because he was always waited on, regardless how many customers were ahead of him in line.  That's it.  

I have missed many family events over the years--but that was my choice.  My family understood why I couldn't come.  

Good luck with your decision.  

Ed1937

Brenda, I know you want to go. You know the possibilities if you take him with you. If you go with him, leave all expectations at the door. Try to be prepared for what might happen. I hope you can enjoy your time with family, with or without him being there.

M1

Brenda, I hope it goes well--and congratulations to your grandson, for sure.

Two thoughts:  is there someone you could take with you with the specific job of being caretaker for your husband?  Family member or otherwise?  Might be worth the trouble/expense and free you up to have some backup.  Just trying to think of alternatives.  The other, of course, would be to leave hime home with a caretaker.  Neither is easy, and I don't envy you having to try to negotiate these paths.

Please let us know how it goes.

Beachfan

Brenda,

I have no advice for you, only empathy.  I agree with Ed.  Prior to placement in November, for several years, I could not comfortably take DH many places.  Even the kids' baseball games, concerts, or family get togethers were a huge hassle and I skipped many because I knew it would be more trouble than it was worth.  

A family wedding is another story.  If I were in your shoes, I don't know how I'd proceed, and yes, would probably be crying as well.  Since it's only a week away and plans have been made, I imagine you have no choice other than to power through.  Expect the best, plan for the worst and know that all your forum friends are hoping and praying for a great experience all around.  Best wishes!  I hope you (all) have a wonderful time.

Crkddy

I know everyone's experience is somewhat unique.  For my DW, travel away from home, even for a few hours, was one of the first casualties of this disease.  She generally has panic attacks, I guess from not being in familiar surroundings.  The last time we stayed in a hotel, she was ready to go home immediately, and after finally getting to sleep, woke up in hysterics. 

We only live 1 1/2 hrs from the coast. We used to go all the time for day trips.  Last year, we I tried to take her, she got into a panic 10 minutes from the house, so I turned around.

This past Christmas, we took a 2 1/2 hr day trip to visit family.  My son did the driving so I could concentrate on DW.  Her anxiety level was high, but we made it there.  She didn't interact with anyone, and was generally miserable.  On the way back, she cried most of the way, complaining about what I was doing to her.  

I've told my family that future travel is not possible for us.

On the bright (and perhaps predictable) side, she generally does fine when she knows we are going shopping or out to eat.   

ButterflyWings

White Crane- 

First of all, I hope and pray that you feel better soon - you have been missed. 

Second, congratulations! What a beautiful thing for your GS to be at this special stage of life, and to want you to be part of it. As long as he and his bride know your DH has an unpredictable dementia reality, that is huge.

Third, I completely understand the dread you are feeling but you have time to put a few extra helps in place. 

• Can his Dr give you something to calm DH in transit and onsite? You may want to try it this week before leaving, to see how it works for him
• Great that you are traveling with others. Like M1 said, is there anyone who can be assigned to help you with DH as their primary reason for being there? A friend, aide or someone in IN even, to step out of the room with him if needed so you don’t have to? 
• I agree with the music for your drive. Will he use earbuds? I have entertained my DH with oldies music and You Tube sitcoms on my iPhone for hours in the car (15 hr road trip more than once, just the 2 of us. Well into stage 6). We were not at a wedding though.
• Someone needs to accompany him to the restroom. Gloves, wipes & depends are great to have in the go-to bag. 
• I used to stick to the smaller less hectic rest areas, vs the super village like truck stops. Multiple entrances/exits are a nightmare. But you have company and help, so you can do it! 
• Hotel stays: I would want an extra way to lock the door. DH once exited while I slept!
• Lastly, maybe keep a supply of his favorite snacks in your purse for the restaurants and reception, to ensure there is something he will like if it might be an issue. My travel bag has granola bars, apples, single-serve juice.

Enjoy!!!

jfkoc

Just be prepared for anything. Take a copy of the DPOA, clothes change and cleanup stuff in the van.

I gave my husband a small dose of Xanax...he had a good time at the wedding.

Be certain that you can get your husband to a quiet place even if you miss part of the festivities.

Be prepared not to see the sisters.

At all times be on your husbands page and just stop talking about the wedding.  Pack something that fits and let it go.

Cherjer

Your event is happening very soon so really not a lot of time to think about what others have posted. So very exciting to see your grandson married. You might want to consider all the activity going on from the rehearsal dinner, to the wedding, to the reception. That is a lot for a person with AD to deal with...so much stimulation. And then the long drive and staying at a hotel. It would be great if you had someone that could be with him in  your hotel room. My husband could have handled this a few years ago but now just being away from home does not work any longer. Good luck and let us know how everything goes.

harshedbuzz

Brenda-

Best wishes to the bride and groom. 

This is such a bittersweet situation with a difficult set of logistics to manage. Some concerns I have:

1. Can't speak to long drives, my dad's last road trips occurred just before his diagnosis in the mid-stages. I did move him a lot, from one house, to another, to a hospital/rehab, to an apartment and finally a new house with a weekend in a hotel in between. I didn't notice the temporary drop into the next stage many report, but I did keep my mom glued to his side. So long as he had her undivided attention, he maintained his current baseline. LOL, he rather loved the hotel and didn't want to leave.

2. Restaurants became hard at some point as he transitioned from stage 5 to 6. Dad was mentally somewhere in the distant past, so he had no concept of prices making it best to keep the menu out of his hands. They overwhelmed him anyway. I'd (when we went out, my mom always chose a seat as far from dad as she could- she clearly wanted a break) say something like "you always liked their crab cakes here" and he'd happily eat what I suggested.

3. Do your daughter and the bride and groom have a real grasp of where your DH is in the disease progression? I could see this being a disaster if they have some notion of dementia based on those "Home Instead" commercials with the sweet little old lady who seems mildly befuddled. With your daughter living in Boston she may not realize how impaired dad is? Your SIL might not have wrapped his mind around escorting his FIL to the mens room.

4. You might want to prioritize the ceremony over the rehearsal dinner and reception. If he's at a point- at home in his own familiar space and routine- that you can't get him to try on clothes, he could refuse to cooperate around attending serial events. 

5. While it's a great idea to carpool and have the extra help, this leaves you stranded if you need to abort the mission and return home. I would be mentally prepared to rent a car and drive home if needed. 

6. You mention he has sisters in the area-- are you close enough to ask them to come stay with him while you attend some of the festivities alone? 

HB

May flowers

One idea is to look into reputable caregiving agencies in Indiana and see if you can hire someone to help watch your DH, and possibly stay with him at the hotel if he starts struggling.

Congratulations on your grandchild’s wedding! I hope everything goes smoothly and you can enjoy the special day.

Rescue mom

In strange places with strangers, I subtly handed out the little cards that say “My husband has Alzheimer’s/dementia. Thank you for you your patience and understanding.” That helped a lot. When people knew it was dementia (not just being a jerk or drunk), they were always helpful and understanding. Be sure to tell any hotel staff, and be sure to have plenty of ID and photos on both of you.

I would take some kind of device to lock/secure hotel doors. DH got lost going from room to car, nor could he find the room again after leaving it. (Unlike before, or at home). If you’re flying or it’s a long drive, consider meds. I was on a recent flight seriously delayed by a PWD having a major meltdown. Her husband kept saying they’ve flown before with no problems. 

In restaurants, I ordered for DH and kept it quick and basic, no discussion. Often did not even look at menu.(We did not go anywhere really nice/interesting once the dementia was obvious).

Your grandson wants you there, knowing about his disease, so he must be willing to accept it. HBuzz point is excellent—do they really know what he’s like now? Or do they imagine a TV scenario? How will other family members, in-laws, react to a scene?

 Since you have other family is  around too, try to talk to some in advance and set up some helpers who will stick with you.

I’d ask the sisters to come there, or  maybe come visit you at home later. This all sounds like a lot already.

You already know his limits at home, be prepared for him to lose still more functions/abilities in different surroundings. My last couple of trips with my DH with Alzheimer’s were nightmares because I was NOT prepared for that loss. Just expecting it would have helped me.

 I thought he could do what he does at home, and I was very wrong, and it was near impossible for me alone. Trips cut short. (Have not taken him on any in years, and I’ve missed a lot). That loss of functions does not always happen, but it happens often. Having others around to help watch him makes a huge difference. 

But, be prepared for anything, including early departure. 

White Crane

Thank you all so much for your understanding and your helpful and encouraging responses.  As you suggested, I will be sure and have the DPOA with me.  I hadn't thought about him needing someone to accompany him to the restroom.  I will talk to my SIL about that.  I'm planning on taking lots of snacks as well as a change of clothes when we go to the wedding.  Eating out is always hard.  Thank you for the idea of either giving him two choices or ordering for him. 

Our daughter volunteered to stay home with her dad while I went by myself but thinking about her missing this wedding broke my heart.  All four of our children and our grandchildren know and have seen DH decline.  The grandkids are especially tender and considerate with him.

As to having a caregiver with us, there is no one to ask.  Maybe I can talk to one of his sisters when we get there.  Again, thank you dear forum friends.  I will let you know how it goes...and will try to go with no expectations.

Brenda

Stuck in the middle

Best wishes, Brenda.

Is it too late to change the minivan to a mini motor home with a toilet?

????

So sorry to hear that.  My wife found out last fall that she has Alzheimer's.  She is not too bad at this time.  We made the decision to travel to places she wanted to see while she can still travel.  We have been on a number of trips since we found out about Alzheimer's.  They are somewhat stressfull to me, seems like new things pop up that I have to watch for each trip.  That being said, our last trip was to Yosemite, she had wanted to go there for a while.  She enjoyed that trip so much, the stress was worth it.  We live in Oregon and are headed for Philly on Monday.  I am getting somewhat stressed out thinking about what to watch for next.  All of that being said, I believe it will be enjoyable for the most part, and in the end I will be glad that we are traveling.  If I were you, I would make sure people knew of your husband's situation and just go enjoy it.  People will understand, don't sweat the small stuff.  Good luck and I hope you enjoy the wedding.

Joydean

Brenda, congratulations to your grandson on his upcoming wedding! How exciting. So many have given you the best advice. I just wanted to say hoping you have a good trip and praying for the best experience. Be safe!