This is definitely a learning curve!

Palmetto Peg

My husband and I just went away for a week in the North Carolina Mountains.  We will receive his MRI results on Tuesday, but he failed the memory tests and is exhibiting some serious memory issues.  The doctor has told me it is likely early stage Alzheimer's.  I wanted us to have a special week together before that doctor's visit and the start of a new life under a new diagnosis.  What a mistake!

DH was so anxious being out of his comfort zone.  He couldn't remember how to get from our vacation unit to the clubhouse - a matter of a block or so.  Then, the club we were staying in experienced a well failure and there was no water for almost two days.  We had to go pick up 5-gallon buckets to flush toilets and he was just overwhelmed - to the point where he came down with a terrible cold.  We didn't do any of the fun things we had planned - hiking, shopping, dining out, etc.  He just kept asking when the water would be back on, and if we needed to go anywhere.  We had to get some groceries and I drove to the store, but he couldn't seem to understand that it wasn't our store at home.  He was in the wrong section looking for oranges and was so upset that there were none (he was in the dairy department).  

I learned a lot!  Any change in location will have to be planned much more carefully.  I need a daily schedule of what we are doing, and I don't think we should go so far from home. I drove the 8 hours home with him asking me if I was sure about how to get home - GPS or not.  He is exhausted, sick and then decided he must have COVID.  We are both vaccinated and actually had COVID, but I went out and bought a home test just to reassure him.  WOW!

I would love some tips on traveling - we are supposed to go to a dear friend's memorial service in two weeks and the trip involves a plane, hotel, rental car, etc.  How can I make it less stressful for both of us?  

Thanks so much for being here!!!!!

Ed1937

It sounds as if traveling like that is always going to be a problem. There is a good chance that he will come back to baseline when he is home for a while.

Here is a link that will give you a lot of information on dementia. http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf  

Jo C.

Dear Peg, what an extremely difficult time for the both of you on your vacation; the fear and insecurity your husband experienced must have been so very dreadful for him;  I can only imagine what that was like for the poor fellow.

You will hear different opinions from other Members, this input is only mine.  I am sorry to hear there has been a death of a dear friend.  A memorial service has been planned that you are thinking of attending taking your dear husband with you which will entail traversing two busy airports on both ends of the trip, and a busy plane flight two directions, the possibility of having to use strange public bathrooms, riding in a rental car, staying in a hotel as well as attending a memorial where there will be a lot of activity, increase in noise and people your husband will not know.  He will in all probability be exhausted and have difficulty processing and be deeply fearful and unsettled; this is not an easy trip one can make a short drive home from.  It could be a steep troubling and frightening tribulation all the way there and home for him causing actual suffering.  (In the midst of a burgeonng pandemic with the hugely transmissible Delta COVID.virus.) 

You ask how you can make this trip "less stressful" for both of you; I'm not sure you can.  Frankly, I would not do this.  Even if you can manage to feel less stressful yourself;  it sounds as though your dear Husband will not have an easy time of it and will once again be required to be in very unfamiliar places with lots of noise, activity, and managing to get through airports, perhaps needing to use strange bathrooms in airports, processing so much noise and action; staying in an unfamiliar place, etc., and then the day of the memorial bringing even more unfamiliar places and faces and noise to have to process, etc.  I cannot see that he will feel safe, secure and comfortable based on his last experience.

There comes a time in our caregiving when what we plan must be in our LOs best interests. One solution if you want to attend the memorial in person -  is there a way you can have someone he knows come and stay with him at your home while you make that trip by yourself?   If not; some memorial servicc locales are willing to make tapes of the service which can be sent to watch at your home; you could send a remembrance from the heart whether it will be flowers, a donation in your friends name to a favorite charity or whatever seems best along with a lovely letter.

With his history, it would be a shame to subject your husband to such an endeavor while he is so vulnerable for just what happened on your last trip.  Routine and structure are the best friends of a person with dementia; upheaval, breaking from routine, too much noise and input to handle, and strange places are so often the enemy and it can be very painful for our compromised LOs.

So sorry that things have changed, but constant change seems to be the engine that drives the dementia train.   To do what is in your husband's best interests seems to me to be the best way to address this.

J.

dayn2nite2

If you need to go to the service, go alone and have someone stay with him.  Or don’t go.  No, people won’t understand, but I can assure you that his behavior at the memorial will be harder for them to understand.  Bringing him there is going to be a lot of distress for him.

Also, you should also start planning on what will happen if you become sick or injured (at home or out of town).  Who will care for him?  He won’t be able to care for himself and if you’re hospitalized the hospital can’t take care of him.

Joe C.

Peg, If you are going to fly there is a program TSA Cares that can provide assistance getting through security screening at the airport. I have used it and at my airport they have a dedicated TSA agent guide you through security screening and ensuring you don’t get separated from your loved one. See the link below.

Also you need to lower your expiration of what your husband is capable of doing or not doing. For example, if he needs to use the restroom at the airport don’t assume he will find his way back to where you are sitting, walk him to the restroom and wait outside for him to come out, have wet wipes on hand because he may forget to wash his hands. Think about getting a medic ID bracelet or other means of identifying him with you contact info Incase you get separated. I traveled a lot with my DW in the early & mid stages of AD, it can be challenging so you need to anticipate possible problems and have a plan to mitigate them.

https://www.tsa.gov/travel/passenger-support 

Stuck in the middle

No way would I get on a plane with a PWD.  I don't fly often, but I've had cancelled flights, overbooked flights, and lost luggage.  Elderly friends have been groped by TSA guards.  Not a place for people who need structure.

storycrafter

To me it sounds like he is further along than "early." Perhaps somewhere in the middle. In any case, I'm sorry things were so difficult on your trip. It was a beautiful wish you had. The disappointment and stress must have been so hard. Give yourselves some time at home to settle and I hope things improve with familiar surroundings.

After this experience traveling with him, noting his anxiety level and cognitive reactions, how do you think he'll respond to the type of travel and situation you're considering? You learned a lot and had your eyes opened to some new realities that will take some time to absorb, accept, and adapt to. Perhaps it was a blessing in disguise, something to learn from that will help you make some tough decisions.

Keep reading info on this site and educating yourself as much as you can. Put in searches on specific topics if you like. Ask any question on any topic of concern - you've got a lot of company and a lot of empathetic, wise ears here. The collective experience, strength, comfort, wisdom, and knowledge you'll find here is priceless. I've learned more here than anywhere else. When I first came years ago, it immediately gave me encouragement, and enough feedback to know what questions I needed to start asking the doctors.

Best of luck and be well.... ~Helen

Stuck in the middle

I love the North Carolina mountains.  I was grieving just the other day that DW and I will probably never go there again.

Quilting brings calm

Peg - here are some more resources for you 

The book  - the 36 hour day. Very helpful and a must. Use it as a reference

A website with lots of info below, I set it up open at the stages page so that you can try to determine where your spouse is based in your observations. 

 https://www.dementiacarecentral.com/aboutdementia/facts/stages/

Like others here, I am not sure your spouse is early( or mild)  in the stages. Not if he is this thrown by a car ride and a change in location.  

I do not think a second, more complicated,  somber trip so soon after this one will go well.  Do you think he can handle a memorial service?  You will find it takes people with dementia days to bounce back from being this stressed out. 

However, I also understand your desire to build more memories of trips together since every one will be more difficult as you go along. 

M1

Sorry it was such a struggle PP. I'm with Jo, I wouldn't try the memorial service trip. I think the pandemic is about to explode again, so I'm not sure it's safe even for you alone.

My mother was born in Salisbury, NC so I know those mountains well. She used to say, "Those of us born in North Carolina see no need of being born again."

harshedbuzz

Unless you have to be there in person, I would skip the trip. Perhaps there will be a Zoom option for those who can't attend in person.

There are too many ways a trip by air can go sideways and if you have to attend to them personally- lost luggage reporting, changing flights, using a restroom- he could go missing on you. Even if you have an easy TSA check-in, he'd have to be masked the entire time and that could be a problem for him especially if he becomes defiant with flight crews or ground security.

Then there's the memorial service. It is not uncommon for PWD to behave inappropriately in such a setting if their short term memory issues that could cause them to forget why they're there and the lack of social filter that might have them say something wildly inappropriate. Unless you are a first degree mourner who has lost a parent or child, grace will not likely be offered should he behave in ways that upset or distract others. 

Not long after dad was diagnosed, my mom insisted on taking him to the visitation for a friend of the family who'd been dad's brother's BFF and dad's sometime golf partner. The man's widow didn't particularly like any of the people associated with the country club and was emotionally wrung out after her DH's 20+ year battle with cancer. I offered to stay with dad, but she really wanted him there; I think she hoped to re-connect him with his friends now that they were local again. Dad went and forgot why he was there and was wildly inappropriate. My uncle was embarrassed and my mother regretted her choice. She not only upset the man's family, most of the friends with whom she hoped to connect dad were completely turned off. 

HB

Cynbar

This dementia journey is full of so many losses, including the ability to travel and adjust to new places. I stopped traveling with my DH a couple of years ago, it was stressful for me but so upsetting for him. He was thrown by the different routine, the different location, the different expectations such as eating out and interacting with strangers, the logistics of travel. I think so much of wanting to travel is about us as caregivers --- we are the ones who want to see friends and family, who want new experiences and memories. Our LOs really don't, they want the safety of home. And, dementia is a progressive disease, the reactions you saw are going to get worse not better. I think skipping the memorial services is the best course, aside from the travel itself he would be expected to interact with a variety of people, many of whom he will not remember. I'm sorry, I know this isn't the advice you were hoping for, but it's the new reality.

Loralli23

It sounds as if traveling like that is always going to be a problem

Palmetto Peg

Thank you all for your input.  I spent a lot of time thinking about the advice you all gave and I have decided that we aren't going to go to the memorial service for our friend.  Just being home for one day has calmed my DH down so much, and his cold symptoms are almost gone.  I think he just got sick from the anxiety.  I feel calmer, too, and am more patient with him than I was on the drive home!  

Here is what I think I will do -- he was so worried about COVID while traveling that I had to buy a test kit when we got home to show him he didn't have it.  I am going to spend the next few days talking now and then about how there is such a spike in COVID and the Delta variant seems to be so much more dangerous.  I will talk about the crowds in airports and about sleeping in hotels that may not sanitize enough, etc.  Then in a couple of days I will ask him if HE thinks we should consider canceling and just sending flowers and a note to our friend's wife.  I want him to think he made the decision.  I hate to already start manipulating things, but he has always wanted to be the decision maker - the cause of more than one argument - and this way he can feel that he decided not to go.  How does that sound?  

Again - I am so grateful to have somewhere to go to bounce ideas around with people who are living my life and know how to make the best of a very bad situation.  Hugs to you all for being so generous with your time and wisdom!!!

Gig Harbor

Peg does he still remember about the memorial service if you don’t mention it? He may forget all about it. He does sound more like he is in middle stages. It is OK to tell therapeutic lies if you need to. Your goal is to keep his life on an even keel by whatever means you need to use. Yesterday a friend said it is like doing a connect the dots picture with a person who no longer remembers the order of the numbers. The lines they draw will have no relevance to the numbers. and a picture will not be produced. Definitely frustrating for the caregiver. Good luck.

Palmetto Peg

I think he will remember only because some of our other friends are emailing him about it.  We haven't shared his diagnosis yet with anyone other than his very best friend who is not part of this group.  Otherwise, it is likely he would forget about it.  I think it will be fairly easy to let him convince himself he doesn't want to go - at least I hope so.  After he decides he doesn't want to go, I will email our friends and let them know what is going on and ask that they not mention it again.

We see the doctor Tuesday and will get the results of his brain MRI - so may have some more information about just where he is in this.  I know it isn't a continuum, and at times he seems almost normal.  This last trip was such an eye opener about what happens to him under stress that I don't want to do it again unless absolutely necessary!

Thank you for the suggestion and I know it will help me in other situations!  

M1

Wishing you well for the appointment. Let us know how it goes.

Newbernian

Dear Peg, I am so sorry that your trip was not the joyful memory you had hoped for.  I took my DH to St. John, USVI 2 years ago, 6 months after his diagnosis.  Neither of us was surprised by the diagnosis, his dad had it as did my father.  So we have lots of real experience with the disease.  The support and new information are great because nothing was available during the journey with our parents. 

I agree with the other commentators that it is best for your sake not to take him.  I had only one glitch in our journey and that was losing him in Atlanta, GA airport.  Very scary for me because I had no idea where to get help.  There isn't any.  Fortunately, he wasn't as advanced as it appears your DH is.  He managed to stay on the same concourse.  With both of us walking back and forth, we eventually found each other.  Remember you need to make restroom trips and that is how my DH got lost.  Please don't take him, for your sake.

If you wish to go, find a service that will stay in your home with him.  There are reputable services available. Contact Alz.org for assistance.  Or contact a local nursing home for a short stayover.  Will this confuse him? Absolutely.  But almost everything will start to confuse him soon.  This is his disease, unfortunately.  He is fortunate to have you there for the future which could be many long years with a bit of sunshine along the way.  Stay strong, sustain yourself, you will need to keep on living your life which will become harder by the day.  I don't wish to burden you.  I am just a realist who knows Alzheimer's does not have a fairy tale ending.  Be well, my friend!

aod326

I'm sorry that you've reached this stage where travel is difficult and stressful, for both of you. You've had great advice already. The comments made me think of our last trip, to Barcelona in November 2018. It was so stressful that there was no way I was traveling with DH again. The trip included losing him at the airport in Barcelona, for several hours, him losing his passport TWICE and having to get a replacement, and many other things. With the benefit of time, though, I can now look back and chuckle at how angry he got that we got a taxi from the airport. I wasn't driving my car and he was furious at the waste of money - he was certain we were still in NJ! The next morning was still the same, even when I said "go outside and listen to the people on the sidewalk"! 

At the time it wasn't funny at all, especially as I was actually on a work trip, so this worry was on top of that. We didn't know at the time that his issues were a result of EOAD. His symptoms were heightened during the trip and, if I'd known about dementia, would have been a big red flag. 

But almost 3 years on, the craziness of that trip makes me chuckle.

The following summer, 2019, my favorite niece was getting married in Italy. I made the unilateral decision that we weren't going. Very sad, but the stress on him, and the stress on me in trying to keep him safe just would not have made it worthwhile. (And that was still several months before he was diagnosed with dementia.)

Paris20

Dear Peg—Not going to the memorial service is a good decision in my opinion. I just returned from a family visit, which I dreaded. Sadly, I was correct. My husband is somewhere in the middle stage of Alzheimer’s. He still knows his way around our house. However, staying at my brother’s house for five days must have felt like five days on Mars to my husband. Although we’d been there many times over the years, my husband remembered nothing. I was up most of the night guiding him to the bathroom, then back to our room. He had two accidents but I came prepared so no damage was done…except to my mental health.

I now know that I cannot travel with my husband again. Peg, your husband may be further along in this horrible disease than you think. I hope the doctor is candid and kind, helpful too. Dealing with any form of dementia involves lots of reading but also going through all the unexpected surprises that pop up. Even the expected behaviors test our skills and our patience. I cannot even imagine a trip involving flights or hotels. Who would take DH to the men’s room? What unanticipated disasters might happen? How would he react to crowds of strangers? What if he got lost while I went to the ladies’ room? I’d be terrified that something might happen. Going anywhere with him just isn’t worth the grief.

Kibbee

I am in agreement with the recommendation to go alone if  you are able to find a 24/7 caregiver to stay with your husband while you are gone.  And if you cannot arrange for that help, do yourself a favor and take a pass on this trip.

The last significant trip I took with my DH was about 3 years ago.  It required flights, with a change of planes midway.  Managing him through the airports about wore me out!  He had a cell phone, but because he was already having problems managing it, I was very worried that we would become separated and I would have no way to connect with him / track him down.  Plus his problem-solving ability was already compromised so I doubt he would have been able to formulate and execute a plan to ask an appropriate airport worker for assistance.  Bathroom visits were also stressful because he had to go into the men's room on his own, while all I could do was wait right outside the door, worrying that some mishap would take place, and wondering what was taking so long.  One particularly long bathroom visit almost resulted in missing our connecting flight. 

We made it home in one piece, but I vowed never to take him on another trip that required air travel!