Traveling with spouse with dementia

. It’s probably not advisable for someone who wanders due to dementia to go on a tour. It could be dangerous. You should probably ask the RS Tour office directly because this board is travelers volunteering their advice to others. We don’t work for the RS Tour organization.

You would be sightseeing/touring on your own -no guide- on the My Way tours so you would be responsible for your partner

The guide is there to assist you at hotels and for transportation but i doubt they would ever be responsible for someone getting lost or confused

Having dealt with dementia in my immediate family, I definitely wouldn't advise it unless they can travel with a 'minder' who can be with and responsible for them 24/7. Even with a minder, the wisdom of signing on to a tour could depend on how advanced the disease is. Unfamiliar surroundings and routine could also exacerbate their confusion and make the experience very stressful and unpleasant.

There's no way a tour manager would - or should - agree to taking on a client with who couldn't reasonably manage on their own.

Janet, that's a tough question and really you will have to decide how well the traveler will do. You know that person better than anyone and know the degree of their dementia. My dad had Alzheimer's and was prone to wandering, especially at night. One night my family went out of town for a family event, and my sister and I were sharing a hotel room. At 3 am, we got a knock on the door and it was my dad, standing there with one of the desk clerks who found him wandering around, and trying to get outside.

That was when we decided it was too tough for the family (and him) to take him on any travels. But your person's dementia may be different. And as Christine said, the My Way tours are basically on your own when it comes to exploring in town. The manager only takes care of logistics. So it would be you only making sure that person didn't wander off or get lost, etc. Definitely something to think about.

If you think that this person may not be too bad off but you still have concerns, have you thought about bringing along another family member or friend who could help?

I traveled with my young daughter and my parents when my dad was midway down with Alzheimers and this was just a weekend in Victoria from Seattle by boat. We had two rather horrifying incidents from his confusion, one of which was life threatening. And we were doing our best to keep tabs and assist.

Unless he is still at a very early stage, I'd be reluctant to tackle this kind of travel; something as simple as the men's room where he goes in one door then wander out another while you wait for him at the entrance can be a major crisis.
When that happened with my dad at least we were on the boat and so eventually we found him but still worrisome. If this happened in a foreign town where you don't speak the language it might be a bigger disaster. In our other incident he nearly got himself and my mother killed by a train. I was too far away at that. point to do anything but watch as they were going to get the car near the port and my daughter and I were with the luggage. he got flustered by an oncoming train as they crossed the tracks and began dithering and crossing the track back and forth as the train bore down with my mother dragging at him and him resisting. It was terrifying. I didn't know where the car was; we couldn't leave my Dad with my young daughter; it was at night and we didn't want my mother walking alone; so our solution was for them to go and me to stay with the luggage.

First of all, I’m sorry your person has Alzheimer’s.
Most of us here can sympathize . having had people close to us with it.
I would advise against it.
The long flight to Europe may be totally distressing as it would be unfamiliar and scary for the person.
Best of luck with your decision.

I also encourage you to consider the other tour members' travel experience. Although My Way tours are different from fully guided tours, you are still riding the bus together, and are invited to some group events. If your spouse is challenging to be around, that could negatively impact the other guests' experience. Our first RS tour included a guest who, it became clear, was experiencing cognitive decline, and it was not easy for the other travelers, or for their spouse who tried to compensate. I truly do not intend to sound heartless, but it is fair to consider this aspect as well.

Janettravels, that must have been truly terrifying for all involved.

OP, for liability reasons, the tour manager would not directly assist with managing the Alzheimer guests needs. That responsibility would be 100% on the person accompanying them. You need to look very closely at the Physical demands, as well as the Itinerary sections of any tour. People with dementia, even in the early stages, can have a great deal of difficulty dealing with changes in their location and routine. A long flight, different hotels every couple of days, unfamiliar surroundings, different meal times and foods- all or any of these things can cause sudden and worsening confusion, anxiety, and behavioral changes that may be very difficult to anticipate or manage.

My mother had a love for travel for most of her life, until dementia stole that from her. We didn't realize how bad things could get until she and my dad were midway through their annual winter break in Maui and she suddenly refused to leave their suite, refused to eat anything but cheese sandwiches, and pleaded relentlessly to go home. The anxiety abated on their return home. But the confusion and behavioral changes only continued to worsen thereafter.

Just wanted to point out that OP has not said this person has Alzheimer’s
There are many other types of dementia

What domestic travel have you done and how did that work out? How well does he do in unfamiliar surroundings?

If he were to get lost, the guide would most likely help you contact the police, but I would not expect anything beyond that.

What are your expectations?

Just wanted to point out that OP has not said this person has Alzheimer’s
There are many other types of dementia

This is true. But in this case, does it matter? Regardless of the type of dementia (even if an accurate specific diagnosis has been made), there will be cognitive and behavioral changes which make travel problematic.

It might matter to the OP

OP - having taken My Way tours as well as regular ones and having been responsible for a prolonged period for a parent with dementia, my take is, sadly, “no”. The My Way tours have a manager rather than a guide, meaning their only stated commitment is to have availability several hours each morning and make sure everyone is accounted for during travel. You are given their contact information but there is no requirement that they be available for individual assistance. We’ve seen situations where they have made themselves available, but a lost or confused person is a whole other level than a lost purse and the tour manager is responsible for each traveler equally. There is actually more cohesion on a regular tour where the groups spends more time together as a unit.

I am so sorry about this.

Most importantly meet with your physician. Everyone has “experience”but a doctor who knows your partner is better equipped to give you the truth and recommendations for your partner. You must consider your own frame of mind and relative health also.

My brother took his wife on a cruise ending with a few days on shore before returning to the US. His wife had dementia which was manageable but very hard on my brother having to be constantly aware of her and her needs. Once on shore and not in such a controlled environment he was totally exhausted and left her in bed watching TV while he took a shower. She slipped out of the room totally undressed and had found her way to the front desk. Brother booked the next available flight home. Their physician said the strange surroundings were just too much for her. She did not have Alzheimer's but dementia as a result of a brain injury. Seriously consider the effect on both the person and the spouse. Good luck!

my mother took my dad to Hawaii where her brother's children were stationed and so he and my Aunt were there. With three adults, my mom was able to have vacation. I think if you want to travel, if you can take adult children or other close relatives who would be able to assist it could work. but one person in a strange place where the person with dementia may feel insecure is going to have a rough and maybe dangerous time.

How was your trip to Munich?

My heart goes out to you. If you decide to travel with your loved one place an Apple Air tag in their pocket, wallet, purse, or wherever you can on their body and download the app, so you can find him/her in case they wonder off.

Thanks for all the kind suggestions! My husband has vascular dementia and he still walks around here to places he knows. I do have an air tag in his wallet and that’s a big help. We traveled on our own with a relative to Germany and we did okay but he had an anger incident on the train when back in the States and we almost got kicked off. That’s only happened once and I could probably avoid such situations in the future. We’ve never done group tours and I thought they might be safer but someone said that we would be sent home if he acted up. There would be less contact with other people if we went places by car, but I don’t want to drive on highways. He takes Sertraline (a happy pill); I could ask his doctor if the dose could be increased or ask one of our children to come or take a chance.

So sorry you're dealing with this insidious disease. It's so hard on caregivers. :O(

As suggested above, a consult with his doctor would be the best idea. A My Way tour would reduce interaction with others (as compared to the standard tour) but how he'll manage a stretch of unfamiliar places and routine is still a concern. You also would need to disclose his condition to the RS office before booking and see if they're willing to OK it.

Curious: Were you able to purchase trip insurance for him when you went to Germany?

There may be facilities where you live that offer respite care so you could take a trip and get a break from your responsibilities.

I would advise against it. If you really want to travel, hire a private driver but disclosing ahead of time your spouse's condition. The other factor to consider is: What if you get really sick, fall, or some other unforeseen medical problem that would cause you to not be able to guide your spouse (yes, things do happen on trips)?

We were on a very high-end group travel situation (private plane), and at one airport (where we had to connect to a commercial plane), I heard a man just "going off" loudly. The tour director was talking with him and the wife..and he was complaining loudly. No one really asked what was going on....it was rather obvious. Interestingly, we never saw either of them again. Guessing the decision was made for them to return home. That's expensive! (Make sure that would be covered under a pre-existing medical condition by travel insurance, if you choose to proceed).)

My GUESS is that your spouse is not pushing to go on this trip.

So very sorry for you and your spouse to be dealing with this condition. None of us knows what is around the corner for any one of us. You do need to go on about life and try to enjoy every ounce of it....but taking your spouse on a trip (and although travel can be enlightening and great fun, it can also be very stressful).....might not be the best idea.

Needing to connect with the bus, allows you less flexibility, should an issue emerge or just a really bad mood...........and you really do need to think of the others on the bus........how could any potential situation adversely impact their enjoyment.

Figure out another option..........or a great caregiver option at home that would allow you to travel.

First, sympathies for the situation life has dealt you. I've experienced a family member's cognitive decline and it is difficult in every way. It is admirable you want to keep traveling with your spouse and provide enrichment opportunities for the both of you.

We traveled
on our own with a relative to Germany and we did okay but he had an
anger incident on the train when back in the States and we almost got
kicked off. That’s only happened once and I could probably avoid such situations in the future.

Just wanted to comment on this point. There is no way to predict (or pre-medicate) a future anger incident. While it may be easier to manage one in a familiar environment at home, there are simply too many variables when you travel and I myself would find it extremely stressful to manage among a group full of strangers on a bus. No matter what group tour you might take (RS or other company) it is highly unlikely they would allow you to continue the tour if behavior disruptions occurred.

And FWIW, this is one of the RS tour conditions that you must agree to when signing up for a tour. It's very clear you would be on your own to manage your husband's condition:

Tour members requiring help must be accompanied by an able companion
who can be entirely responsible for providing the assistance. (If you
have concerns about the physical demands of our tours, please call
us!)

Best wishes to you as you navigate this difficult path.

I can certainly sympathize with your situation.

I took my uncle, who had Alzheimer’s, to Germany to visit his children and so he could meet his twin grandchildren. They were toddlers at the time. We were not on a tour and spent the entire week in a rental house. Thankfully there were 3 other adults besides myself to keep an eye on him, but the long journey from California and back it was just the two of us. It was like traveling with a toddler, but one I couldn’t take into the airport bathroom with me. Under the circumstances involving visiting the family it was entirely worth it, but I wouldn’t have done it otherwise.

I also took my brother with Alzheimer’s to spring training in Arizona to celebrate his 50th birthday. My husband and another brother were with us so they could accompany him to the bathroom and there were always 3 sets of eyes on him. It was a wonderful trip, but again I wouldn’t have done it on my own.

I wouldn’t consider a tour in your situation, but if you just want to travel you could consider taking a third person along to help.

Don't do it, been there, done it with a parent some 30 years ago...whatever issues you see in a home environment will be much more numerous and dangerous on any kind of tour or travel.

My wife has vascular dementia and what has become clear to me is that Alzheimer's and the various other forms of dementia such as Vascular and Lewy Bodies manifest quite differently, and while they share some similarities they can have significantly different paths.

Every patient is individual.

We go to guided meetings weekly and sit in couples with an average of 8 - 9 other couples which are living with different diseases and in different stages. We aren't told what they are suffering nor stage and not who is the person suffering.

I was surprised this week when the husband who I had always assumed was the sufferer indicated that it was his wife who was having trouble with the tasks.

Now my wife and I have made 2 trips to the Netherlands this year and have two more trips planned to Germany and Switzerland We are implanting memories and revisiting some of our favourites. Granted, we take our own car from England but that isn't due to the dementia but other unrelated medical issues of limited vision and balance/mobility. While there are memory issues she really enjoys our trips, including a Puffin spotting trip yesterday.

We are lucky to never have had anger issues and she doesn't have any dementia medication. Only medication would be for Alzheimer's - Vascular doesn't receive medication here. I don't know about any "happy" medication.

What I'm trying to say is that everybody is different (my mother had Alzheimer's) and should be evaluated individually.

Some people can travel well, some not so much.

My wife gets confused sometimes and can get lost in our house. With me there as her carer (and long tome husband) we get around that and solve the confusion. Having reassuring words from somebody who loves her works miracles.

So how would he get on with a My Way? I expect you and your doc could make educated estimations. I'm sure my wife, at this stage of life, would be fine with me along all the time.

Good luck whatever you both decide. Hang in there. Happy travels.

I could (a) ask his doctor if the dose could be increased or (b) ask one of our children to come or (c) take a chance.

(a) or (b), or both are reasonable courses of action

(c) looks like being as good an idea as using knives for your first juggling lesson

I hope you are able to find a workable solution

There are tour companies that specialize in tours for handicapped people. Whether or not they are suitable for your situation would mean contacting them.

If you Google "Tours for handicapped adults" you should get more information.

So sorry to hear about your wife Nigel, it’s a horrible condition.
Every person’s situation is obviously different but a couple of observations from the experience we had with my dad who also had vascular.

I would be very careful altering medications even with a doctor’s guidance. They put my dad on a very low dose antidepressant to deal with some of the symptoms relatively early on in his diagnosis. This caused no problems until the doctor decided to tweak the dose. My dad who throughout his illness was always calm and never aggressive, went off! He was running down the street, the police had to be called, he was almost sectioned. It was horrendous, for him as much as us. I certainly wouldn’t risk it just for a holiday.

We once took the risk of staying over night in a hotel. I was with my parents. My mum, who was a geriatric nurse, knew wandering was a risk so she did she could to lock and barricade the door when they went to bed. It didn’t stop my dad. He very quietly, (and tidily!) moved all the stuff and was down in reception in his PJs. When asked for his address so they could find his room he gave his childhood address which didn’t help matters:-) Luckily mum woke up within a couple of minutes and the problem was solved. My mum always says people with dementia can be sneaky when they want to get out. I honestly can’t see how taking part in a tour where you are staying in different hotels can ever go well. It could be positively dangerous, with different layouts, flights of stairs etc

The impact on other people on the trip should also be acknowledged. Yes in an ideal world everyone should be accepting but it isn’t an ideal world. Dealing with dementia can be hard work, and let’s be honest sometimes annoying, for people around it not just families. People are kind but it only goes so far.
For some reason my dad had a symptom which was almost incessantly humming or whistling It’s a long way to Tipperary. This went on for years. We got used to it, it was actually helpful because we could always tell where he was in the house, but it was bloody annoying to people when we were out and about. It could be funny though. He went everywhere with my mum, humming away, and in the supermarket one of the shelf stackers would listen out for him. There would be a shout of ‘Hello Brian’ from over the shelves and he would have a ‘chat’ with him every time ( my dad had very little speech). He cried when mum told him dad had died.
No real reason for telling you this but it’s nice to remember dad. And yes we played ‘Tipperary’ at his funeral.

Love it, Emma - thanks a million. Sorry about your Dad

Janet,
Just one small hint...When my friend's husband had dementia (in his 50's) and reached the "sundowner" stage and wandered at night, in order to get some sleep she tied a string (or maybe it was ribbon or yarn) around his wrist and hers, so when he tried to get up it would tug on her and she would awaken. No chance of him falling down the stairs or wandering into the street. It worked quite well!

Along the lines of Frank’s suggestion to look at tours for disabled, you can also search tours for special needs (where I ended up when searching for tours for those with dementia). Although they appear to focus on younger special needs kids and adults, some companies also include those with dementia in their marketing. These types of tours do appear to have additional “chaperones “ whose job is specifically to help keep track of these tour members. I (fortunately) have no firsthand experience; just sharing information I found with internet search!

Emma - What a sweet story about the supermarket stocker and your Dad. Thanks for sharing.