I can't follow my own advice when it comes to travelling

LadyTexan

DH rarely leaves the house. Nearly every outing with DH is exhausting to me even if it is just a walk around the neighborhood.

Our last hotel stay was 2 years ago. It was anxiety inducing for us both. DH couldn't operate the card key or find the elevator that was right outside our door. The noise in the hallway bothered DH significantly. It was NO fun.

If anyone would ask the forum about taking a trip with a PWD, I would discourage it. Somehow, I thought (wrongly) that I could pull it off.

DH has been wanting to visit his childhood friends about a 5 hour drive away. I know DH is terminal so I was committed to making this happen. My logic was he is more able to take this trip now than 6 months from now. I decided to rent an air-bnb because I wanted to have a quiet place where we could relax. I decided our caregiving routine was too high maintenance to impose on a friend. It was very exciting to plan. DH is very excited about the trip. 

Today DH said he wants to take the dog to the beach. ARGH! It is hard enough to get DH in and out of the car and where ever we might be going. Having a sand covered dog in tow is too much! I never even considered taking the dog along. This caused me to question my ability to make this work with or WITHOUT the dog.

DH needs 24/7 supervision. Eating at restaurants is a thing of the past. That's why the air-bnb made sense to me. It has a full kitchen and I can cook. But is it realistic? How do I get the groceries? I'll have to ask friends to assist, which seems an imposition, especially now that DH is incontinent.

1. What was I thinking? 
2. Why did I ignore the fact that we are beyond travelling? 
3. How am I going to walk this back? 
4. Why can't I follow my own advice?

LadyTexan

The huge red flag that enlightened me to my flawed thinking wasn't the dog comment as much as a significant BM mess earlier today. I can handle a BM mess fairly easily in my own home. We have a huge shower that makes clean-up straightforward. A Trash can specifically designated for soiled briefs. I'm skilled at getting poop off our floor and our furniture and our linens. NOT so much on a rental property.

My judgment was off. Its not too late to change plans. But geez! what was I thinking?!

Stuck in the middle

1.  You weren't thinking, you were feeling.

2.  See #1.

3.  Blame it on covid.

4.  See #1.  Advice is always easier to give than to receive.

Sorry.  I'd like to travel, too.

Stuck in the middle

You don't have to be crazy to be a caregiver.  We have a training program.

DrinaJGB

I stopped taking trips years ago. DH wants to go back to a little town we used to visit in earlier years of our marriage. I don't have the energy anymore, and I use my dogs as an excuse not to go. They have never been boarded and I'm not about to start now.It's too exhausting going o a trip and all I get out of it is more tired---constant hyper-vigilance about insomnia issues and incontinence issues. NO thanks. I do fantasize, however, about going somewhere peaceful alone. But that's just a dream.

Rescue mom

At least with hotels, they have staff who will be hugely helpful (IME), and many have mini-kitchens. They will clean up worse messes, and help otherwise.  For food, you can also do  take out (you go get it and bring it to room), or delivery, or room service (which is often not great but better than nothing). And you can get or bring snacks for the room. With Ab&B, all those issues you mentioned still exist—there are keys, maybe more, again IME, he still has to be led in and out, and if you get locked out, you’re more or less on your own. We did ABB but hotels were far easier for me because of the 24/7 staff help.

We travelled a lot, all over the world, before Alzheimer’s. That was what we did, what we worked and saved for, and what I miss more than everything else combined. I tried really hard to make it happen with his Alzheimer’s until I hurt myself (long term, not just a sprained ankle or injury) and realized if I’m down, then nothing works.

If it was my DH, I’d just say it’s not happening, for any number of reasons, most of which would be fibs. He’d be upset and disappointed. Then he’d forget about it, regardless. But I understand wanting it to work. As said, I tried, with disastrous events. If you are exhausted by a walk or a beach outing, a trip just sounds awful. Plus, so many PWDs lose abilities in new/different places, regardless of all the above.

Ed1937

LadyTexan wrote:

I know DH is terminal so I was committed to making this happen. 

The only thing this means is that you have been, and still are trying to make it as good as you possibly can for him. He is so lucky to have you. Even if it didn't work out the way you imagined. Just remember that it could have been a complete disaster if you took the trip.

Paris20

Having returned from a trip to visit family a couple of weeks ago, I’d say «I’m thinking clearly now and I realize that this trip will be dreadful.» My husband seems less far along in the disease than Lady Texan’s DH but my husband has had several recent incidents of continence at both ends. When we were on our trip, he had one of each. He was lost in my brother’s house and I got no sleep trying to anticipate all kinds of accidents. When we went to visit my 99 year old mother, my husband o had only a vague idea where we were, although we’d stayed at her home countless times over the last 40 years. He kept asking where we were staying and immediately forgot, as expected.

There comes a time when we have to accept the reality of where we are with this awful disease. My realization came during that most recent trip. My husband and I traveled extensively over the years. I want to remember those wonderful times, without taking one more trip for old times’ sake. I’m already planning how I can see my family, especially my very elderly mother, without taking my husband along. He has an aide but he cannot get along well with her, despite her trying endlessly. Since DH has anasognosia, he sees no need for any help, especially from someone who isn’t me. 

M1

I’m sorry LT, I know you must be disappointed. Let us know what you ultimately decide…it’s humbling how our perspectives can slip and slide, isn’t it?

LadyTexan

The discussion about the dog, tugged at my heart. It made me realize that DH is not going to see our dog Hap play at the beach. We are not going to watch any more sun sets together over the Gulf of Mexico.

DH and I have had many wonderful memories. I am grateful for those. I realized today that some of our adventures were our "last" of that activity. It makes me sad.

CS 63

I can relate to your post.  When my HWD is having a good day or seems involved in a good conversation I get ideas of wonderful things we could do, and then reality hits and I realize that it's as much my wanting to do things we used to do than his. Sometimes it's subtle and other times it's like a slap in the face, and he's not got continence issues. Planning things is exciting and the feeling of being in control of events outside of the daily norm is too!  Sorry that it feels like all of that is crumbling down around you. 

Any chance that you could persuade some of the 'old buddies' to come your way? Might be easier all around!

Lorita

LT - you were thinking with your heart and thinking about how things used to be and how you wished they are now.  Very understandable.

 The last trip Charles and I made was about three or four years before I lost him.  It was to Eureka Springs, a place we often went and loved.  We had planned to stay two or three nights but even the first night was hard - Charles was ready to come home so we did the next day.  Traveling is just now the same as we hoped it would be. 

 I think the trip you were planning would be hard on both of you - unfamiliar surroundings to him and all you have to do which would be much harder away from home.  Think about it seriously - you'll make the right decision.  At least we do have memories of trips we did make.

Cherjer

LT...I am planning a  trip to MN and then a 6 hour trip from MSP to Michigan for a sibling reunion. My 5 sibs and I have done this for the  past 6 years since our mom died. Of course last year was cancelled. I am completely nervous about this venture, but know it will be the last time we will be able to travel (live in CA). I have no idea how DH will react to flying and staying at  B & B..it is a risk I know and more about me than my DH. Our internist has encouraged us to go and will have anti-anxiety meds for DH (I might need it, to).Airports have services for helping us.

Elshack

You were thinking with your heart and not your head. My DH and I have been on 20 cruises and the last one was 3 yrs ago just 2 weeks before he had major brain bleeds and had to have emergency brain surgery. He was prior to that MCI and after surgery definitely Moderate dementia. Thanks heavens we were not in the Virgin Islands at the time and were back home in N Carolina.

Even now he asks when are we going on our next cruise? Instead of saying never, I say that noone is crusing now due to  Covid. 

Hopefully your DH will not remember your plan to visit his buddies and maybe if he brings it up you can mention Covid. Even if you had the shots you could still get the variant.

My heart and prayers are with you! I have days when I foolishly think things will get better and then I come  back to reality.

LadyTexan

Thank you all for helping me process this. Thank you also for not making me feel worse than I already do for my poor judgment and flawed thinking. I love you all.

I'm tumbling around some options in my head.

1. Maybe ask my sister and her Significant Other to join us so I have another pair of adults to assist.
2. Consult with my nurse friend. Ask her what she thinks and then decide.
3. Pay the caregiver to join us. This is likely cost prohibitive.
4. Assign the buddies tasks to make it easier. For example:

• Buddy # 1 stocks the fridge based on what I plan to cook
• Buddy # 2 takes DH for a drive to give me some breathing room.
• Get the housekeeper on speed dial and tip her large.

But the solution that seems most likely right now: Get real. Cancel the trip. Blame it on COVID and ask the buddies to visit us in Central Texas.

DrinaJGB

Sounds as if you are going and not following your own advice. Hope it works out and you have a lovely time.

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jfkoc

pooped on furniture in the AirB+B.....not a good thing

abc123

Dear Lady, I feel as if I have come to know you and for that I am truly grateful! If you make this trip, please bring your sister and her SO. 

Whatever you decide, you will be covered up and lifted up in prayer. Please keep us posted. Hugs to Hap.

Beachfan

My daughter-in-law is a gem, but she thinks with her heart and not her head.  A year ago, in September, she planned a family outing to a "Lantern Launch" at a motor speedway about an hour away (on a good day, no traffic).  Crowds in the thousands expected, activities from late afternoon until dark and then a launch which, if lucky, would last 15 minutes.  "We can go early, we can park in the handicapped section, we will drag everything we need in a wagon, pop can just sit when we get there......."  No, NO, NO, NO!!!! I prevailed and sent them on their way.  About 3 hours later, I got a text: "OMG, thank God you didn't come along!!  We got here early, walked about 2 miles, handicapped spaces gone, and they are at least a mile away.  Pop would be dead."  

She did not learn her lesson.  About 3 weeks ago, at the 'shore, she announced that "Mimi and Pop are going to the beach! We did it last year, it wasn't so bad!" (Yes, it was).  No again, some heated discussion, but she caved.  Sure enough about 1/2 hour later, I got a text: "OMG, thank God you didn't come along! No where to park, hot as hell, long walk across the beach to the water and it's so crowded, we can't even put our chairs down yet."  I never say, "I told you so!"  Maybe that's why she never gives up.  

I lament all the places we used to go and all the fun things we used to do, but I've learned to find peace on the front porch without all the flim flam. My day will come, I hope.   Ask his buddies to swing by for a visit; his true friends will make the effort.  (You are to be commended for trying; you are much more ambitious than I ever was!)

June45

Beachfan wrote:

My daughter-in-law is a gem, but she thinks with her heart and not her head.  A year ago, in September, she planned a family outing to a "Lantern Launch" at a motor speedway about an hour away (on a good day, no traffic).  Crowds in the thousands expected, activities from late afternoon until dark and then a launch which, if lucky, would last 15 minutes.  "We can go early, we can park in the handicapped section, we will drag everything we need in a wagon, pop can just sit when we get there......."  No, NO, NO, NO!!!! I prevailed and sent them on their way.  About 3 hours later, I got a text: "OMG, thank God you didn't come along!!  We got here early, walked about 2 miles, handicapped spaces gone, and they are at least a mile away.  Pop would be dead."  

And you too would probably be dead! 

LadyTexan

I talked to one of my best gal pals this morning. She listened while I flip flopped all over the place. She was not judgmental. Talking out loud helped me process my thoughts and feelings. I concluded that taking the trip is not worth the risk of the potential disasters including mental and emotional meltdowns or physical breakdowns. My gal pal is awesome! She made be feel super, but helped me realize that I am not super woman. 

I'll walk it back. I'll blame it on COVID and also that the Air-B&B won't allow the dog. I'll ask the buddies to come up here. The true friends will.

Thank you again everyone. Your feedback (as always) gave me clarity. 

loveskitties

Dear LT, so glad you have come to the decision which you feel best with.

Some times our heart gets ahead of our minds about doing things that might be done.

Hope that many of his buddies are able and feel the need to come visit you both.

Jeff86

Your love for your DH drives you to do amazing things, LT.  And mostly you succeed, fantastically.

I also admire your flexibility, your willingness to re-think a decision.  This trip would be incredibly challenging, with high potential for disasters of many kinds.  A lot of stress for you, and an uncertain outcome for your DH—will he recognize his buddies?  Will he react differently than you might expect?  Even if it worked out, will he remember the trip, even as we try to create good moments in the present?

DW and I used to travel extensively.  Last big trip was to Africa, in 2018, and arguably that was pushing it.  Last flight was in 2019, as DW was nervous on the plane, negotiating an airplane bathroom is a nightmare, and so on.  We’ve had to abandon road trips too, as DW gets restless in the car.  And then there’s the fact that the routine at home works a lot better than the disruption in a strange place.

The loss of travel is a big one, especially as our family is far flung.  But it’s part of acceptance, on the AD journey.

Beachfan

When in doubt, consult your “gal pals”.  They will never steer you wrong.  (Sorry, guys.) Hope it all works out for you and DH.