Traveling with 80 yr old mom with Alzheimer's

Best wishes on your son’s upcoming wedding next spring.
I would think that while in Italy it would be easier and safer for your mother to travel by rental car instead of public transportation.
As far a base camp, how many do you want to stay in for the four weeks?
We traveled to Bologna from Lake Garda but we stayed in hotels. You would not want a car there. We left ours in a garage the whole time. Verona is near Lake Garda as well. Are you planning to rent apartments or homes? I would personally love to stay in Bologna as a base.
If on Lake Garda, we enjoyed Saló on the SW side, recommended by Italian friends. Few of any Americans, most visitors were Italian or German . It has a beautiful lakeside promenade. We also spent time in pretty Malcesine, NE side of lake.
This is a large undertaking and I wish you well!

Your questions are excellent - and I can offer no assistance - but, may I respectfully add - this proposed adventure has the makings of a fascinating literary work. I encourage you to consider it.

Thank you both for your unwavering encouragement.
Hoping my Italian Grandmothers Angel helps lead the way.
I shall check out Bologna asap. What better place to be held up : Great Food, scenery and people.
Michelle

Having had a Mom with dementia I'll throw a few things out there.

-How are you going to divide up the sleeping arrangements? I'd not let her be in a room alone so you may need to sleep with her and have your DH and son bunk in together. When I took my Mom and Dad on car trips we usually got 2 hotels rooms anyway - snoring and non-snoring, lol - so Mom and I were together in a room anyway. It worked better as her dementia progressed because she was used to that arrangement.

-You'll want to do the packing for her. I let my Mom do her own for one trip (WHAT was I thinking?) and she packed almost her entire closet because she loved clothes and she was really past the point of making decisions. I did it the next time with her "input" so we had a capsule wardrobe of black and khaki which was easy for her to coordinate when she got dressed. She did tend to put on the same clothes every day so I had to monitor that. You may need a few more clothes for her as she may spill or have accidents if you can't find a bathroom quickly enough (even if she is normally continent at home).

-I'd want some kind of nightlight that you can put in the bathroom. I'm wondering if one of the battery lights that you can put in a closet where there is no plug would work for a travel item?

I'm sure you will talk with your Mom's healthcare provider but expect her to have some increase in confusion during the trip as she confronts unfamiliar things - people, places, food, smells. Sometimes people are more oriented in their own surroundings as things are familiar but when you take them away from that they deteriorate.

I'd also make backup plans for keeping her comfortable at home while you travel. The coronavirus situation for next May is unknown. It may not be a good idea for her to travel or her condition in 9 months may be such that it will not be possible for her to travel.

This reminds me of a book called Incontinent on the Continent by Jane Christmas. She tells of her trip from her home in Canada to Europe with her 80 year old mother. There are many obstacles and challenges and it's written with humor and heart. Not sure it would have many practical tips, but it might provide some moral support.

I expect you know that unfamiliar territory can make Mom's symptoms worse and for many 80 year olds, 5-6 weeks traveling can be grueling. I have not been a caregiver under these circumstances, but I will ask.....is there any way to have someone else bring Mom over only for the wedding portion? I am not sure where you are traveling from, but the first few days should be scheduled for her acclimation and resting up from jet lag. To be honest, particularly if you are thinking to have her with you the entire time, it may be worth paying the flight for another person to come to specifically be companion to Mom.
Bologna is a good base camp for the areas of interest. There are even some direct flights to Tirana, Albania to make things easier. For some reason, Rick Steves doesn't cover this area well in his guide books. There are some strictly for this province, Emila-Romagna, like Bradt guide, or Lonely Planet will dedicate a chapter to it and these can be bought as e-chapters.
If you are striving for a slow pace, you can easily stay in Bologna for a few weeks with day trips to a number of interesting towns and cities. You then need to determine which lake region suits you best. It looks like Como has flat walks and easy access to towns, buses and trains which might make it a good option.

Michelle, one piece of information I'm curious about, and that would benefit other travelers with older parents, is which travel insurance plan you've found to cover your 80-year-old mom who has Alzheimer's disease.

Last fall, I invited my mom on a trip to Europe to see relatives. Though she was "only" 74 at the time and is in excellent health, it was hard to find travel insurance with health coverage for her. The best travel insurance package offered by the insurer we chose for her covers people only through age 75. The premium was extremely high, a health questionnaire was required, and the contract listed all sorts of exclusions. For example, people who had had cancer; people over age 60 with any respiratory, heart, or autoimmune condition; and people who needed any assistance with daily life needs; were excluded from coverage. Keep in mind that those exclusions can be applied post-facto, during claims review.

(By way of background, my mom resides in Ontario, Canada and needed only supplementary health coverage and medical evacuation coverage. Travel insurance options vary based on a person's state, province, or country of residence. Whether the person has primary health insurance, and whether this provides some level of coverage for medical services abroad, are other important factors, especially for Americans.)

My mom and I were both surprised by the age limits in the travel insurance market. We realized that travel insurance restrictions might make international travel impractical long before an older person became unable to travel.

I am so thankful that my mom could accompany me for three weeks of my trip to Europe last fall, and that she had no health issues while abroad.

I hope you will have a safe trip with your family!

I don't exactly know what you mean, Michelle, about your mom being mid-stage Alzheimer's.

I speak as the son of a mother who had Alzheimer's for at least 15 years (7 in a home after my dad died, and at least that long before). She was very confused and forgetful for probably 5 before that, so her journey was long.

My parents had always traveled together after we kids grew up, and she loved cruises. After they returned to the UK in about 1998 (7 years before my dad died) I had the chance to see her lack of facial expression and slowness to understand things.

When they took a train from London to Paris my mom fell off the train because she didn't notice the step down off the train even though my dad was supporting her. Two weeks later, on the return trip she fell on her face getting on, not seeing the step up. She wound up with injuries from that one, but luckily a couple of hours later I was meeting them on arrival, got her sorted and drove them back to their home in the Cotswolds.

I share all this just to make the point to you that trains can be tricky for people like my mother who had been on and off public transport all her life. These two falls just came out of the blue. Good weather, good sleep before, apparently happy and in touch. My mother had spent some of her happiest years in Paris and it always brought a smile to her face nearly to the end. Neither my father or I would have expected the falls.

So please consider if trains is best for her in her circumstances.

I don't know you or your mother, Michelle, and I don't want to scare you. I want all of you to have the best trip all of you can do. I wish you well.

I miss both of my parents - dad died in 2005 and mom 7 years later.

Enjoy all the time you have with your mother.

A thought about the insurance situation raised by cognac: People have said here (I haven't verified) that some Medicare supplemental policies provide a degree of overseas coverage. If your mom's current coverage does not, you can research alternatives now and consider switching, if only for next year. I don't know what you may run into in terms of cost for evacuation coverage if it is even available for her. Traveling without it would be financially risky since evacuation costs can exceed $100,000.

I'd consider whether it would be best to make a few of your excursions via car and driver. It will certainly be more costly than a train, but the flexibility has considerable value in that you'll be able to see multiple small towns in one day, which will likely be impossible via public transportation.

Michelle,
It sounds like you have received a lot of valid advice & potential concerns up thread. As a healthcare provider who has cared for Alzheimer patients over the decades, I too have many of the same concerns. That said, I believe your best advice would come from your mothers current healthcare provider. Congratulations in advance for the 2021 Wedding.

Michelle, thank you for allowing us to speak frankly.

My first question is, "are you the usual caregiver for your mother?" This makes a big difference in the situation.

I don't know your mother, but I do know how my own parents and in-laws felt at this stage of life, and how the ravages of this disease impacted my precious parents. My observations were that comfort was found in the familiar and in fact the familiar was the lifeline my father held onto as long as possible. Home became their refuge and the world outside the home gradually became a confusing and somewhat frightening place to visit.

I have to tell you that this trip seems like it is way too long for your mother, even with thoughtful planning and pacing. It takes her to one unfamiliar place after another. In addition, It may simply not be safe for her to travel in May of 2021 with the Covid-19 Pandemic. There is no question she would be at high risk for complications from this disease. It would be possible to live-stream the wedding to her and she would probably enjoy it more.

If you are her caregiver, you are in a tough spot. You want to go to your son's wedding and enjoy this special trip to Europe. That is perfectly reasonable. Perhaps you view bringing her along as the only option for care? There are some other options. Do you have other relatives who might be able to step up and help? Also, many Memory Care facilities will provide respite or temporary care for individuals.

I know you are in a hard place, not only with planning your trip, but also in watching and caring for a loved one and watching them slip away. My heart goes out to you.

As a retired healthcare provider and daughter of elderly parents, please for your sanity and your mom's find someone at home for her to stay with. I speak from experience. We took my parents to a destination wedding out of the country. They were miserable. They didn't like the food, they missed their bed. Overall, it was a miserable time for the entire family.

As for where you can have your mom stay, check with the local Skilled Nursing Facility, Assisted Living or Adult Family Homes. They will usually have programs for your need.
I know that you really want your mom with you for such a wonderful event. My suggestion, take lots of pictures. Buy her trinkets. Let her stay home and have a wonderful time.

I have no specific recommendations but some questions come to mind that may have have some relevance and need to be addressed to plan a successful trip ( and hopefully not derail the trip)

1- What is the care situation presently? Is she in a care facility or cared for at home by a professional caregiver?
If a family member is the care giver, how often ( if ever) is outside assistance required.?

2- What has her MD said about this

3- Is her condition stable or in a continuous decline.? i.e., what is her condition likely to be a year from now?

4- In her younger/healthier time, what sort of travel did she do. Prior to the current 'stay home' advice, did she do any travel with the family, and how did that go?

Hopefully by next May travel will be feasible and you have a wonderful trip

Wow, I just want to compliment our Travel Forum on such quick and heartfelt experienced answers! This truly is a caring group.

Neither of my parents had Alzheimer’s, so I can’t help you with those details. But, as a loving daughter, I will share that whatever decision you make, weigh your options and then don’t beat yourself up for the pros & cons of that better choice afterwards.

This was my experience with my then 81 year old Mom...

We were travelling from the West Coast to Italy. We had traveled together several times before, most recently 2 years before the following events. She had not yet been tested/diagnosed with Alzheimer's or dementia. We had noticed some forgetfulness, but her GP didn't feel it warranted testing.

On the flight over, as we were approaching landing in Italy, my Mom was mildly agitated. She kept saying we had forgotten our luggage and had to go back and get it. I kept assuring that our luggage was loaded on the plane. Nothing too bad, but it did raise my concern.

The first 3 nights in Italy, she slept poorly, often waking up disoriented and wanting to walk out of the room. I kept having to reassure her all was ok, but she struggled getting any sleep or peace of mind.

The flight home was bad. She started hallucinating (reaching for things that weren't there) and was very agitated. She did not know she was on an airplane. She did not want to stay seated--I had to physically restrain her from undoing her seatbelt and getting up during our final descent. It was a horrible experience for us both.

Upon returning home and sleeping a night in her own bed, she was fine the next morning.

These events led to a trip to the neurologist and her Alzheimer's diagnosis.

I understand wanting to share these family experiences with your Mom, but please take into account what others have already said about the comfort that those with Alzheimer's feel in their normal surroundings, and how disorienting travel can be.

I tend to agree with the people who are saying what you propose is not a great idea, but also we don't have all the facts. My parents traveled extensively (2-3 major trips a year from retirement in their early 60s to their early 80s). Some independent, some tours). By then my father was suffering from mild dementia (Alzheimers). The last couple trips they took were cruises so that they didn't have to move hotel rooms and on any given day if he was having a bad day they didn't have to do that day's excursion. A cruise won't work for you, but having an apartment in a base town from which you do day trips would be the best idea if you do decide to take her. The towns you list and Lake Garda are pretty close together so that could work. But someone would have to be willing to stay 'home' with her on the days she didn't want to go anywhere. Normally I always suggest trains as opposed to cars, especially for that area, but I would definitely do a car in your case. Much easier to just hop back in the car when she's had enough instead of having to get back to the train station, hope there's a train when you need it, etc. But that is a very long trip. I frequently take trips about that length and it's tiring even for me, I really don't see myself doing that when I'm 80 - unless it really is to just stay in one place and do occasional day trips.

I agree with so many of the points that have been raised especially as to whether you are the caregiver or not. I was, so I knew I could manage Mom on a car trip although for the last one I rented a wheelchair.

I'll add about the Medicare Supplement question above - Yes, some of the supplements do cover emergencies during International Travel. Here's the verbiage from the Medicare.gov website:

"Standard Medigap Plans C, D, F, G, M, and N provide foreign travel emergency health care coverage when you travel outside the U.S."

Thanks for looking up the Medigap information, Pam. I would urge caution.

Even if a person has one of the Medigap plans that does cover emergency care abroad, Medicare.gov indicates that these plans pay only "80% of the billed charges". The site points out that "[f]oreign travel emergency coverage with Medigap policies has a lifetime limit of $50,000." It's not clear whether medical evacuation back to the US is covered. Last but not least, foreign hospitals can demand payment up-front.

(Travel health insurance plans have their own pitfalls, of course. The devil's always in the details.)

Cognac, I have an old C plan and it does NOT cover evac. And you are right, you have to really study the details and know what you are getting.

I added the information mostly for others. I’m not sure this will be helpful for OP’s Mom.

Pam and Cognac, FYI, my AARP supplemental F plan does not cover evac. The foreign travel lifetime limit is $50,000.

Chase Sapphire Reserve card includes medical evacuation coverage -- not sure what restrictions regarding pre-existing conditions. But evac usually requires that the person is admitted to a hospital first, then certified as able to be evacuated.

My Mother-in-law lived with us for over two years with this terrible disease. My wife cared for her needs. It was a heart wrenching experience.

I know Alzheirmers patients do much better in their own surrounding and taking them on trips would be the last thing to consider.
Isn't there a way to leave her at a care facility?

If you do take her, you must never leave her alone for a second.
When touring, I suggest one person stay with her at the hotel, instead of touring. Of course, if you find bus tours where there is little walking that would not be bad.

I assume that she is not so far into the disease that she needs a wheelchair.

Best wishes to you and your family.

Hi, Michelle, and welcome to the forums. i see you're a recent addition to the RS community! :O)

A sibling of mine has brain atrophy, which has symptoms very like Alzheimer's or dementia. I'll agree that we need more information about your mother's "mid-stage" condition? What are her most concerning limitations?

That said, I'll agree with the posters above that nearly 6 weeks of continual change (accommodations, transport, cities, food, surroundings in general) would be very hard on her, even for "slow" travel. Even the time change could throw her badly. Add Italy's (and likely Albania's) frequent absence of mobility aids we're used to, such as elevators or dependable escalators, and this could be a whole lot of no-fun for everyone. As someone above mentioned, her condition 8 months from now could be very different compared to what it is today. I'm so sorry; Alzheimer's is such an insidious disease! :O(

Again, we don't know what sort of shape your mom is in today but my sibling is 20 years younger, has poor balance, displays frequent periods of agitation, confusion and inappropriate behavior, and is completely self-focused. There's no way I'd take her on a 6-week trip, not even domestically. She simply couldn't deal with that much change for that long a time. 8 months from now? I expect further deterioration. The counsel from those above to think long and hard about taking mom along, as gently well-intended as I'm sure the effort would be, is one I'll echo.

As a side note, have you done any homework on train travel in Albania? I don't have firsthand experience but, well, some of what I've read doesn't exactly inspire confidence, especially if traveling with a challenged, elderly parent. I LOVE Italian rail travel but, you might take a glance at what the ever-reliable "The Man in Seat 61" has to say about Albania? Scroll down to "Traveling by train in Albania":

https://www.seat61.com/Albania.htm

It seems that bus travel is a more popular form of public transit in that country but as it appears you have a son living there, I'm sure he can provide the best firsthand advice on the subject!

If you do take your mother, yes, Bologna would be a good base for the four weeks. You could go many places on day trips a couple of times a week. Someone could stay back with mom if needed. You said you wanted a slow pace. My MIL would never leave the house when she spent a month with family on the French Riviera every summer, even to go to the grocery store. She sat in her room a lot, ate dinner before everyone else, and was in bed by 6:30. So one house your mom can call home is best.

As others have said, be sure you have some health and evacuation insurance.

If by May, it's clear that your mother can't make the trip, please don't feel bad arranging care for her at home. You can FaceTime daily. It's really a difficult situation.

Finally, I learned not to discuss travel in advance with my own mother because it provoked anxiety. The more time my mother had to mull it over, the more likely we'd end up in the emergency room, brought on by anxiety, for a day of tests, just before we were leaving. I learned to tell my mother only the day before, if at all, and I'd say it was for only a few days. She had caregivers, visitors, and could call me even overseas. It was complicated.

Michelle, I (thankfully) have no direct experience with Alzheimer’s, but I just wanted to let you know that it is obvious that you care very much for your mom.

However this trip works out, I wish you the best, and congratulations on your son’s wedding. I hope it is a wonderful day for your family.

Hi Michelle, While I understand your desire to bring your mother along on your trip and to your son's wedding, I have to say that you should think long and hard before you do so. My mother suffered from dementia and I was her care taker for 7 years prior to her passing this past March. As others have mentioned, this will be difficult for everyone involved, your mother especially. My mom did not do well at all in unfamiliar settings and could have never adjusted to the moving around and new settings you will be doing on your trip. She will be confused and her cognitive functioning will suffer. This will be a difficult situation for you and your family. You will constantly need to be alert to her needs, reassuring her all the time. You will be mentally exhausted. As someone upthread suggested, maybe have her come for the wedding only. As much as I'm sure you all want her there, however, she probably will be better off at home in her familiar surroundings. One last thing to consider is that your trip is in 9 months and there will most likely be more of a decline in your mother over this time so while you might think she'd be OK for this trip now, she may not be in another 9 months. It's a horrible disease and so hard to watch a love one go through. I wish you luck in whatever you decide and congratulations on the upcoming wedding.

One question that never got answered:

What does your mother's doctor/physician have to say about this trip for her?

This would be worth more than all the speculation and advice that we have thrown out.

I flew with my legally blind 84 year old father and my step-mother (with mild dementia) to a family wedding several years ago. My step-mother didn't feel up to the wedding after the flight and rehearsal dinner the night before. I missed the reception because I was in an emergency room with my step-mother. I'm still not sure if her complaints were real or imaginary - not that it mattered, the trip was a total nightmare. I had just started a new job and couldn't stay with her after the Saturday night of the wedding - her daughter had to fly in to be with her.

If you stay home with your mother, you will miss the wedding. But if you take the trip you are planning with her, there's a good chance you'll miss the wedding.

Michelle,
You've gotten some great advice. I want to emphasize how precipitously things can go downhill.

My step-father-in-law died from Alzheimer's last March. Last Thanksgiving, he was "helping" prepare the Thanksgiving meal and said grace, though it was mostly unintelligible. By New Year's, he was bedridden and totally incontinent. He required 24 hour care.

His last birthday was June 2019. By then he was having hallucinations. Any change in his environment was very upsetting to him. The only time he left the house was to go to the doctor's and that always threw him for a loop. By May 2021 I doubt your mom will be able to travel and even if she seemed OK, I think a trip like this would be incredibly stressful on her.

Perhaps to get an idea of what you may encounter, take your mom on a trial trip to somewhere new that would mimic your plans. A long train or car trip coupled with a air BnB stay of several days in a new city. Of course, as someone who had a parent with Alzheimer’s I can only say that today will be different than 6 months from now. Even my mom who didn’t have Alzheimer’s would have found a trip of the length you describe to be difficult. After a week anywhere she only wanted her home and familiar things around her. She was never the travelers we are and couldn’t understand our choices.

I think Michelle is gone.

Perhaps she is thinking over all the responses.
It would be interesting to know what she decides in the end.

My Mum had senile dementia, not Alzheimer’s; and she went quickly from being quite happy to spend the day at our home , to putting her coat back on 10 minutes after arriving , and saying she wanted to go home.
I would go away for a couple of weeks, and when I returned she was happy to see me , but had no idea I’d been gone.
She lived in a very caring care-home by this point, and was fully mobile and active physically.

I would never in a million years take an elderly lady with Alzheimer’s on a big overseas trip.
Not a holiday for anyone, and a big source of anxiety and great distress for the lady concerned.
You wanted blunt.

S J, i agree with you and everyone else that advises against. My mom had dementia. Worst thing you can do is take them out of their familiar surroundings. It accelerates their decline dramatically. I wouldn’t take anyone with dementia anywhere unfamiliar even for a weekend, let alone for a 6 wk European trip. But i don’t think this is what Michelle wanted to hear.

"bet you didnt know there were so many doctors on the RS forum"

I don't see one bit of medical advise in the responses. What I do see is common sense approaches as a result of personal experience. Their opinions match my experience as well. The best thing to do for all parties concerned is to find a caregiver to stay at home with Mom, while the rest of the family attends the wedding.

bet you didnt know there were so many doctors on the RS forum"

Good to see I am not the only one puzzled by this comment.

As for OP silence, I suspect the bucket of 'ice cold water' of how risk prone such a trip is, may have left her breathless.
Most of her post was a request of 'how do I do this?', and mostly got replies that suggest "don't".

Given the circumstances, I think criticism for not making immediate responses is harsh.

Guess James hasn't read the following....

"Welcome to the Rick Steves Travel Forum for Europe and beyond! Join our lively community of travelers who exchange advice, tips and experiences."

James, please point out the medical advice you are referring to.

The OP said all suggestions would be welcomed, even blunt honest ones.

I think people are giving her their honest opinions and suggestions - even if it's "don't do it".

Some people have no idea what it is like caring for a person with any form of dementia. All the replies suggesting the OP reconsider or not take her mom on this trip, and the valid reasons for not doing so, are right on point!

Until you’ve taken care of someone with the disease, you don’t know what you don’t know. Speaking from experience is not medical advice.

Michelle,

I tend to agree with many of the others, in that it's probably not the best idea to bring your mother on such a lengthy trip to Europe, given her age and the fact that she has Alzheimer's. What has her Physician said about this trip? She will be exposed to many new and unfamiliar locations which could be confusing and stressful, and also at 80 years old she may not have the physical stamina for a trip like that (although you didn't provide any details on that).

My Mom had Alzheimers and I remember one of the worries was her "escaping" at night and wandering around the neighborhood. Locks had to be installed on the interior of doors as if she had been able to get out, she could have ended up anywhere. You didn't provide any details on whether this is currently an issue with your Mom's "mid stage Alzheimers", but it certainly could occur. Alzheimers doesn't improve so her condition could be worse at the time of your trip.

Having a comprehensive travel medical insurance policy (including evacuation) for all of you but especially your Mom would be a really good idea, and at her age that could be a very expensive part of your holiday.

One final point is that travel in May 2021 may not be possible due to a resurgence of COVID-19, which is now happening in many countries. Your profile doesn't indicate which country you live in, but access to Europe may not be possible by May (especially Italy, which has had more restrictive policies than some of the other E.U. countries).

I'm not a medical expert, but simply providing a few thoughts based on my own experiences.

"bet you didn't know there were so many doctors on the RS forum"

I have pretty thick skin so can tolerate and ignore a lot of comments on various forums. This comment, however, I found personally insulting and demeaning.

Many of the people offering suggestions here, including me, have dealt with a parent with dementia. I provided supportive care for 10 years then moved in and provided 24/7 hands on care until Mom had to go to a skilled nursing facility. It seems to me that there are a heck of a lot of us offering advice here based on personal experience with this awful disease.

Please don't try to diminish our advice with a snotty, unfeeling comment.

I hope Micxhelle is able to gain some useful input from the posts and will be able to make a good decision for her Mom.

Thank you, Pam.

Bets beat me to it! Thank you Pam.

Thanks Pam

Thank you Pam.

Still waiting for James to cite the medical advice he refers to.

My new friends and comrades in arms . Sit tight I am composing a 4 pages response addressing all issues raised . FYI James has sent me his medical advice via private message .
Please give me until Tomorrow to let the dust settle and I only hope Mr Steve’s is ready for a novel long response.
You have all done his forum PROUD .
Till tomorrow,
Michelle

So nice of you Michelle, thank you : )

Ladies and gentlemen, my apologies for the offense.

James E - I didn't realize that you were a doctor.

Thank you, Pam.

Michelle, best regards to you. All our comments here to you have been in a loving and helpful way.
We care about you and your mom.
We hope your trip to Italy is the best ever, whether you go with or without your mom along.
Best wishes to you,
Rebecca

My apologizes for taking a week to respond back. I tend to read & dissect all well-heeled and heartfelt advise.
Joe32f. : Yes you are correct, I did feel a bucket of ice water splashing down on the back of my neck but; it was refreshing! . After that initial shock I was left touched by the depth of answers & experiences each of my comrades had.
Susan The on going account of the Forums votes, thus far : 9 indicated Yes for mom to travel, 10- Firm No”s , 8 -were Borderline ; but All with well-heeled advise.It appears the positive comments were the initial ones . Not sure why but regardless, I thank you all for your Honest, upfront, no-holds barre advise.
I would like to begin with James who did not ask but rather stated “ I bet you didn’t know how many doctors read this forum.” He is right, I didn’t . But,more importantly I take it as a compliment directed towards the Commenters on this Forum. Both James & if I may add myself, consider your in -depth advice to be on the same intellectual level one would hope to find in person who bears the title Doctor. I believe it was meant as a sincere form of flattery. Why ?
Simply put ,your personal experiences & outpour of loving advice will never be found in a medical books. Nor sadly in any Alzheimer's book, to date. You all have taught us ; the medical community what it is like to be in the trenches.
I am a retired nurse, whom has been Mom full -time Caregiver since the beginning of this awful journey,7 years ago. Sure, her Neurologist & I are trained to read M.R.I. to detect increased accumulation of gray matter in the brain. But Taui ’s rate of growth coupled with the pt. increasing deterioration differs in each case. Yes, we know the differences between s/s of deliriums vs. dehydration vs dementia vs UTI. etc…and the normal perimeters for Vital signs . But quite honestly, Alzheimers was briefly taught, lumped together with other acquired neurological condition. One hopes to understand it & the effects it has on the patients behavior, visual perception etc..when and if , they are exposed to it during clinical routine. This makes for a very segue view.
Additionally, my son Fiancées parents are both medical doctors in Albania. I cannot attest to the med. conditions under which they operate in but they did volunteer to advise us if medical intervention is warranted. James also kindly offer several recommendations as well as medical advice for Albania. He had PM me to which I remain grateful for.
—Above all it goes without saying : You are the foot soldiers in this battlefield, housed up in dirty trenches ,watching our loved one deteriorate. Your survival tech. cannot be taught unless experienced first handedly. —. My husband and I have lived & cared for her ,24/7 for the past 7 years; yet she never ceases to amaze us.
Your responses have help me formulate 2 different realistic plans for travel.
Plan A is based on :
a)Mom health remaining the same as today .
b)A vaccination for CoronVirus being administered prior to traveling.
c) Neuro & PCP go ahead.
Suki- Thank you for suggesting Bologna as it seems to have something for everyone. Additionally ,we will shorten the trip to Italy by 2 weeks & remain solely in Bologna for our basecamp apartment .
Marie F. - Plan A seems to dovetail with your advise in allowing mom time to acclimate& rest up. Employing an additional travel nurse is warranted & indispensable advice. I am starting to vet those recommended by our local Alzheimers Association.

(to be continuied)

Mom & another family member or nurse shall remain with her ,in the apt during the day time. So, if she had a hard time sleeping at night then at least she will be able to “sleep in “ the following day,having both breakfast & lunch there.
Marie F. - Plan A seems to dovetail with your advise in allowing mom time to acclimate& rest up. Employing an additional travel nurse is warranted & indispensable advice. I am starting to vet those recommended by our local Alzheimers Association.

We intend to return from day trips in time to join both of them for dinner & gelato. To me , Italian evenings are made of therapeutical, magical moments compared to the daytime offering .I ‘d rather she be well rested & verging on boredom prior to Albania. I predict that will be riddled with unforeseen festivities leading up to the Wedding.
COGNAC & Acraven. September hurdle to climb will be researching the fine print on all Medicare Plans regarding travel abroad, 50 k lifetime limitation on Evacuation etc..… I honestly admit to being naively foolish in not having thought of it. Heck, in this pandemic an evacuation plan is applicable to all ages.
Laurie B.- Yes I do have Chase Shapphire Blue but I must reread their fine print.
Nigel- Your experience was the one I could most relate and see myself in. As mom had many tumbles going up or down stairs ; prior to knee replacement surgery. Still , we must stay vigil in realizing their depth perspective is also altered. To that end, we decided No Train travel for her. I need to look into hiring a driver to & from the airport. I cannot thank you enough for sharing your heart wrenching story in which readers could easily feel the love you have for them.
Hcota- I truly enjoyed reading Incontinuent in another continuet. But , after reading this Forums varies experiences I am confident that. ..Together ,if we publish our experiences it would rival Jane Christmas book.
Blue- Stay tuned. As they say ,”Life is stranger than Fiction .” And to date, my life has been, as you say “the making of fascinating literary work.”
Forgive me ,Mother calls and I shall continue writing Plan B tomorrow.
Thank you again for letting me clearly see my options.
with deep graditude,
Michelle

Just to add comments on two issues ---

We stayed in Bologna for a month last summer and had a wonderful two bedroom, two bath apartment for me and my husband. Bologna by CA standards is quite reasonable and it was a great location from which to do day trips with excellent train connections. Bologna offered many interesting culture, shopping, museums and of course food possibilities. A great walking city with a well preserved city center and lengthy porticos throughout the city which makes it a wonderful place to stroll.

Regarding insurance we are in our mid 70's and buy medical travel insurance and evacuation coverage through Travel Guard. Yes, its pricey when you're our age but easily obtainable.

Good luck with your decision making.

Thank you for your heartfelt reply and your actually taking the time to read and ponder the comments. I’m sure all of us appreciate that.

“I believe it was meant as a sincere form of flattery. Why ?”

Sorry, but since you are new to the forum dynamics it was not meant as flattery from the poster. I see he has removed his posts.

Your extra information has clarified a lot of things. That you are the care provider with a professional background does add a dimension to the puzzle as well as having medical support once you reach Albania.

Good luck to you and your family Michelle.

May 2021 will be here and gone before we know it - please return to the Forum and let us know how it went.

Michelle,
Thanks for taking the time to come back and explain.
This sheds new light on many things.
Whatever you decide to do, please come back to the forum someday and tell us about your trip.
Best wishes and good luck to you and your family,
Rebecca

I would echo Rebecca’s request that you share the journey after it’s over. It would be an invaluable addition to any travel forum. You are the first in my memory to share your story so completely. I’m sure I’m not alone in wishing you strength and peace as you go through the caregiving journey.

I would the add that the first time I took a vacation while being my dad’s caregiver, it was an international trip. When I got back it was a much bigger mess than when I left, so that’s not always a simple solution.

Pam is right: Sorry, but since you are new to the forum dynamics it was not meant as flattery from the poster.

Thank you for coming back Michelle.
I adored my mom and i know how very difficult and painful it can be.
Best wishes to you and your mom. 🌷

mcassidy29, thank you. You know if 1% of the people in this fine world had your heart it would be amazingly better. You are welcome in my tent any time.

As I mentioned (cant remember if the PM or the post) I will be in Albania in a few weeks. If the wedding is there I suspect you have all the support and information you need, but if not let me know if i can check something out for you. It would be a pleasure.

If your Plan B includes leaving Mom home in her usual familiar surroundings (with nurse) and keeping in touch with daily Skype or Zoom conversations, you might want to do a number of practice sessions while still at home. And expect to get some middle-of-the-night calls because she feels like chatting in the afternoon. Tough tradeoff, feeling like you want to be in two places at the same time.

Thanks Michelle for the additional information. It gives us additional perspective.

Now I think you need to ask yourself a few questions.

Why do you want to bring your mom on such a long trip? I can think of a few reasons. Is you mom still able to realize when you're not there? Whenever my mother-in-law would spend a morning at the doctor or out shopping, my step-father-in-law would get agitated. Is that a concern you have? For better or worse, he progressed to the point he was unaware she was not there.

Are you concerned about providing healthcare for her while you are gone? That's a legitimate concern, especially if you are not there to supervise the care provided.

Do you want to give her one last memorable trip? That would be a noble motivation. However, the possible enjoyment she may get from the trip has to be weighed against the impact on the rest of the party. Based on my experience, if she comes, her care will be the main focus while you are there and will consume a substantial amount of your time every day. That's something I don't need to tell you because I'm sure you are well aware.

You asked us to give honest opinions about your plans. Have you sat down with the rest of your family and asked them to give their honest opinions?

Continue to look into the travel insurance aspect. As already stated, Medicare supplement coverage is nominal. As I understand (and I might be wrong), the patient pays the bills to the provider then files a claim for reimbursement. I have no idea about foreign travel coverage offered by medicare replacement policies like Advantage.

Medical evacuation coverage might be a good idea. Most policies say they include evacuation to the nearest adequate medical facility, but not back to your home country of origin. One needs to read the fine print. Accidents happen. Health crises happen. Read the fine print on credit card coverage and confirm you are reading the most current up to date version of that coverage. Some are better than others.

Buying regular travel insurance can be very expensive for an 80-year old in good health. Some have waivers on pre-existing conditions if purchased within a stated time after booking a trip. And nowadays, I have read that many policies exclude coverage for COVID19 and it's fallout. It might be a good idea to research the insurance aspect and keep in mind that insurance plans can change on a regular basis, these days. They certainly have in the past six months.

Also look into CFAR (cancel for any reason) coverage, which is usually additional and can be quite expensive. This way you can make an informed decision.

Here is a good article on travel insurance: https://www.forbes.com/sites/christopherelliott/2018/08/18/the-best-and-worst-travel-insurance-companies/#615386104fc2

I did some looking for insurance for my upcoming trip that covered COVID and had no problem.

I plugged in 80 years old and some other random numbers on this site https://www.travelinsurance.com/ and got a dozen quotes from $250 and up on a 15 day, $3,000 non-reimbursable trip. I didnt spend the time picking through the details of each.

Hi, my situation is a little different (as are they all), but I wanted to chime in with my experience.

My family moved my mom from the US to Ecuador this winter, in an effort to get her good, affordable care.

Up until the move, she was still living at home and was quite active, though deteriorating noticeably. We had daytime caregivers and I was there at night and she had breakfast and dinner with my dad every day. She was still walking, climbing stairs, climbing in and out of my dad's truck, and she almost always recognized her family, her surroundings, etc. We told her that we were taking a vacation, but she was so panicky about leaving that we tried to not to talk about the move in front of her. I couldn't even pack when she was home/awake.

We flew first class, with three people who knew her well (including me and my dad) and it was brutal. On our second flight, she decided she wanted to go home, got up, and practically ran the length of the plane. By the time we got to Quito, she was completely out of it and had no idea where she was or what was happening. That night, in our hotel, she hardly slept, but kept getting in and out of bed. At one point she got up and (( guess?) peed all over the bathroom floor.

By the time we arrived at our final destination the next day, she was hallucinating, tried to take off her clothes in the taxi, and then we we finally arrived wouldn't get out of the taxi. She refused to eat dinner, tried to climb a spiral staircase, tried to fight off the caregivers who attempted to prevent her from climbing, and ended up falling down.

Somewhere along the way she contracted a raging UTI and by the time it was diagnosed/treated, she'd mostly stopped walking, couldn't get in and out of bed on her own, and yelled and screamed whenever we tried to help her.

We ended up buying a wheelchair for her and she's been in it ever since. She can walk, but only with lots of help, and she's completely dependent on the other people now. She's also never regained the degree of lucidity that she had in the US.

She's happy and calm and well-taken care of now, and we knew that the move would do a number on her mentally. (Our calculation was that she would do better here, with me + her cats + nice weather, than she would in a nursing home in the US, which I do still think is correct.). But she was strong and in good physical condition and we 100% expected her to be mobile for several more years.

I don't know how advanced your mom's condition is or how much she'll understand what's happening -- but I would caution you that things can go downhill really, really fast, and being pulled out of her normal surroundings/routine can exacerbate it. I personally wouldn't consider moving her unless it's a one-time permanent move. And if you do go ahead with it, I would give some thought to how you'll respond if she just completely can't adjust or if her physical condition deteriorates suddenly.

Good luck!

Oh LizzyL. My heart breaks for you, your Mom and your Dad and all you've gone thru. Thank you for sharing your story. You have to make the best decisions you can for your loved ones even if the outcome is not what you expected or wanted.

LizzyL, thank you for sharing.
Your experience is so similar to our experience with my beloved mom. When we realized my mom had dementia in 1998 i read a book on the subject and it was very helpful. It stressed over and over not to take them out of their familiar surroundings unless absolutely necessary, and if you do, they will deteriorate and never recover.

LizzyL, you have my admiration and sympathies as well. :O(

The thing is - and the elephant in the room, mcassidy29 - is that your plan is based on mother's condition TODAY. Her condition 8 months from now is the unknown that concerns many of us. It also sounds as if she hasn't recently been exposed to trips with changes of surroundings and overnight stays in strange beds?

No nurse or family member's 24/7 attention will be enough to keep her calm and happy if multiple moves cause her anxiety/agitation and/or if her current condition deteriorates a great deal between now and May. Heck, no one knows how a move across the puddle and series of location changes might affect her even at THIS point in time?

I don't stress this to be a downer at ALL, mcassidy29, but in you and you mother's best interests I think you're gambling on a lot of sketchy unknowns working in your favor. IMHO, it comes down to choosing between you, your husband and your elder son being able to give your FULL attention to your younger son's special day, or possibly being frazzled, tired and distracted by your mother's extreme discomfort being away from all that's familiar in her little world.

To be honest, this is your son and his bride's center-of-attention occasion. Being able to be fully present for it would be a lovely gift. That may mean that Grandma safely and comfortably shares the joy on video or in pictures after the fact.

Today marks the 1 year anniversary of my father's death from dementia. He went from walking quite a distance with a walker to being wheelchair bound in the space of about 1 month. It was beyond hard to watch my strong, brave father face this final losing battle. He became scared of so many things because the world became harder and harder to understand and process.

My sister and I found that as his condition changed so quickly the last few months that we were often 1 step behind where we should have been in planning his care. I'd be working on getting something set up, and by the time it was ready, he had already moved on to a different need.

I really respect Michelle and her desire to include her mother and make sure her mother is involved in family life. I do want to caution that even as good as her motivation is, the reality is that such a trip will probably not be pleasant for her mother and subsequently it won't be pleasant for the others as well. We were constantly surprised after years of watching slow decline when things suddenly became quite rapid. There is no predicting when this will happen.

I urge you to find alternative ways to include your mother in the wedding other than her traveling to it.

This piggybacks on LizzyL. Hallucinations are a concern. You never know when hallucinations can begin and if you’ll get your loved one back from them. It's an upsetting statistic, but when it happened to my mother, I was told by staff that half the hospitalized elderly have hallucinations. Some don’t ever stop hallucinating once it begins. Having dealt with them once, that was my biggest fear— that it would happen again.
My mother’s began during a hospital stay. She floated into another mental world right before my eyes as we were talking. I kept calling her but her face changed expressions and she was gone mentally. She had decided within seconds that nothing and no one was real. We were all evil impersonators.
A few days later my husband went with me to visit, and she snapped out of it. What a relief. I researched every alternative to keep her out of a busy hospital after that. The setting had frightened her and flipped her out.

Thank you again for All heartfelt, first hand advice . I keep thinking back on Carol advise to simple live -stream the wedding event .
It’s true ,we will ALL be stressed due to her reactions traveling . I now know I must make peace with myself no matter in leaving her behind . Yes , she will deteriorate at a faster pace if we take her .vs. If she stays home without us she MAY deteriorate . Also , coupled with the question I ask myself. : Where will she be physically the safest ?
So begins the journey of finding live - in help for her and we are also exploring the possibilities of my husband or older son staying home with her.
My closing question to all : should I close the forum ? It has been a wide eye opting education for me & I am sure others in the future will feel the same .
And , if you are reading this ,for an older loved one : I say make as many wonderful positive, experiences for them now and hold the moment fast .
With Much gratitude , Michelle

You can turn off notifications. I hope you don't delete it though - it's an interesting discussion.

Michelle, kudos for trying to do the very best for all involved. Being the caretaker is such a difficult job involving such difficult decisions! We're all solidly in your corner, and wish for you to be able to relax and enjoy the special event. Heaven knows you've earned it!

Please don't delete the thread as it'll no doubt be useful background for someone else in the same situation, OK?
Hang in there!

You can also ask the webmaster to close the thread to new replies but leave it intact. I agree it has valuable information and a lot of good discussion.

I hope this thread isn’t closed. It has been so therapeutic for me to read other people’s experiences as i still have very deep sadness about what we went through. Hearing others speak here is so helpful for healing.

closed to new replies is possible - just ask the webmaster. Please don't delete it though - it means a lot to us who have contributed - well it certainly does to me - and future folks will want to have it when they are going through similar.

Thanks for coming here, Michelle, and please don't be a stranger. We are a pretty tight little family here - even if like families we sometimes bicker, but from the clash of differing opinions the spark of truth shall come - and we do look out for each other.

Furthermore, although many of us have been here for years contributing and reading each other's posts, this part of our lives has not been shared before. It's been eye-opening to see how many colleagues have dealt with these challenges. Contributing to your question has served as a after-the-fact support group for many.

So well said Bets.

Bets, you are so right...

Yes, thank you. Years ago, a friend's mother had Alzheimer's. Friend was in the medical field and her husband was a doctor. She said, "Keep them out of the hospital if you possibly can. It's so disorienting for them." I spoke with her recently, and she said that now a hospital stay has been recognized as a cause for PTSD (for anyone, not just for a dementia patient). I haven't researched that yet, but I certainly don't doubt it.

Rest assure I most definitely will not delete the thread. Thank you for pointing that aspect out . This forum has been most therapeutic for myself as well . I never realized how many shared my idea of traveling firsthand . I will most definitely write again in June so we can all know the final outcome . But going forward it is my hope someone may brave this storm of traveling with an Alzheimer’s parent. Successfully. I do know if I do have thoughts of taking her . I will definitely implement your travel advice. Capesule wardrobe, nightlights, travel insurance , transportation etc... were worth far more than all the advice specialists or experts in the field could even begin to know about . Till June please all stay safe from Corov 19 .
Michelle

spam from nop rial with that horrible nasty link has been reported for zapping.

Please don't click through - you never know where down he rabbit hole it will take you or if they are after your ID for ID theft or if they are just after your money

mcassidy29,
Thank you for posting this very important question. I just found this message thread and am sorry that it looks like it will be too difficult for your Mom to accompany you on your family wedding trip. My father, who suffered from dementia, lived with us for two years before he died and, sadly, I would agree that taking such a trip with him would have been impossible. I am also a nurse but learned so much more about dementia from living with my father than I ever learned in my decades long career.
Since you are considering bringing in a caregiver, may I suggest employing someone early so that your mother can be very used to the caregiver before you leave? My father was adamant that he didn't want help from anyone (but family) but once we found a caregiver he liked, he looked forward to her arrival and I was able to leave the house to go to work and run errands. If a caregiver could become part of her frequent routine, your family's absence during the trip may be much easier.
Good luck to you!

I’m sorry for your mother and what she is going through. You have received excellent advice. Last summer I moved my then 83 year old uncle from his home of many decades in the Midwest to California to live near me. He has moderate Alzheimer’s. I moved him into a facility that allowed him to be in Independent Living. His children live in Germany, where they have been most of their lives. Last October I took him there for a visit. My cousins rented a large house for a week that was big enough for everyone. I rented a car because I felt the train would be disorienting. We were in a small town, so it wasn’t overwhelming. Even though his daughters were there, he still looked to me to take care of things for him. We had a wonderful time, but in all honesty it was like traveling with a 4 year old. I think any longer than a week would have been too much for him. He’s now in memory care. I’m so happy we did the trip a year ago. You have to do what’s right for you and your mom, but if it’s an unpleasant experience for her it will be unpleasant for everyone.

I lost my Mom to the effects of Alzheimers in 2005. In 1999, Dad wanted to visit us in California and also spend a week in San Francisco, My parents were very mobile, but my Mom had episodes at that time where she didn’t know where she was, or who the people around her were. To an outsider, my friendly Mom would appear to be completely lucid. My biggest fear for their trip, would be for my dad to go to the restroom, telling my Mom to wait in a restaurant. And then she’d go wandering off, not having a clue where she was. My husband and I hoped that if we visited them in Texas, we could convince my dad to cancel the trip. Everything worked out Ok, but on the bus from SFO to Santa Rosa, my Mom was convinced that the bus had been hyjacked by the bus driver. Three years later, she tied her shoe laces for both shoes together, fell, broke here hip, and that was the beginning of the end, two years later. She never did learn to walk after her hip replacement

Highly recommend leaving your Mom home. Her safety and well being are more important than attending a wedding in Italy.