Thoughts on Travel
My husband is 56 and has Dementia, Dercum's Disease, and a TBI from his military service. He is well into stage 4. He easily loses focus, gets confused, loops with questions, loses items, forgets to take meds or where he is going, and we are having the discussion about driving because he has gotten lost 3 times in trying to go to a very familiar place (but it is a 3 hour drive). He also calls me anytime he drives anywhere and wants me to talk him through every turn and toward every destination. I follow him with air tags and maps to give him directions.
My question now is about the consequences of traveling. We were avid travelers for most of our marriage (20 years). We have backpacked across countries and even lived full time in a motorhome for 6 years to travel around the states. He LOVES to travel and hates "being stuck at home."
During Covid, things changed and we ended up more stuck at home than we'd planned. We sold our motorhome and our RV site in FL. We both miss the travel and he is frequently talking about going back to Disney or traveling to other places, taking a cruise…
My hesitation comes from our experiences during Covid. In the first year, his father died and his mother came to live with us. She was in stage 4 dementia. With the loss of daddy and the quick move into our home, she very quickly went into stage 5 and then it rapidly progressed until she passed in less than a year. This has me terrified.
Does anyone have experience with traveling at this stage? Does the change in location and the lack of routine escalate symptoms and spur progression? Or does it give the person enjoyment and encouragement that they are still able to do what they love? Does it increase the afternoon and evening confusion or does the travel and new places help them forget about the stresses of dementia and they are able to better experience the moment?
I am so torn on this. I want to keep bucket listing with him, but I am terrified this will just make him worse. I am already struggling with where we are now. And even when we sit down to try to plan something like a trip to Disney (our happy place!), he gets all into it to start, but then can't concentrate, drifts onto something else or keeps circling, and then has forgotten we were even looking by the next day. Then starts talking about it again and wants to plan. :(
I appreciate any advice on this. The driving decision is really hurting him and I am just thinking this may be a way to help him keep some independence while he has to deal with losing the freedom to drive.
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Travelling is tough. My DW can't go longer than 30 minutes in the car without getting agitated. My DW is stage 5-6. "Does the change in location and the lack of routine escalate symptoms and spur progression?" I don't think it escalates symptoms or spurs progression but getting out of your normal routine might seem overwhelming to your husband. My mother-in-law is stage 4-5. My in-laws tried two times to visit us but they had to turnaround. My mother-in-law wanted to go home. Your experience may be different. I wish you the best.
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My DH and I went on a trip a couple months ago. It was a great time. We flew to FL and shared some much needed time with our daughter, SIL, and grandkids (who met us there). Like yours, my DH is well into stage 4.
The one thing I learned was that I needed to ensure a fair amount of down time in our plans. Thankfully, the Airbnb we booked had a nice back yard with a pool. DH and I sat and relaxed while the kids enjoyed the pool. The busier we were, the more anxious DH seemed. He enjoyed the quiet times the most.
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I would try a trip that is one night overnight and see now he does. Generally, unfamiliar surroundings will magnify and issues he is currently having.
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Please don't let your LO drive. It's not safe. Listening to you give directions on the phone provides further distraction.
Traveling with my LO became difficult around stage 4. Urinary incontinence started on a road trip despite numerous stops. I worried everytime he was out of my sight.
It's difficult to lose the activities that bring us joy. Dementia sucks!
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I’m going to give you my view as a caregiver. We stopped taking trips, cruising, hotels and all that stuff when my DW was in stages 4-5. I’m not sure if she got any enjoyment from these but I was so stressed each trip. Packing before the trip, getting through the airport, checking into our hotel room or cruise ship room, planning each day, arranging clothes to wear daily and so on. Add to that the repeat questions, the redirecting, the potty trips and on and on. I was so relieved when we returned home and got back into our daily routine. I would suggest trying a short overnight trip first. Good luck
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We continue to travel some but I know it is all on me. I don't ask him to do anything. I plan, pack and organize everything. I also work in quiet time, early bedtimes, plenty of time for layovers etc. My DH is in stage 5. I know it is stressful but I think he still enjoys it and enjoys seeing family. I also have to accept that things may be a little out of wack when we return but so far he will eventually settle back into the routine. I agree try a short trip to see how he does everyone with this disease seems to react differently.
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From what you described, traveling is going to be extremely difficult if not impossible. Your husband will become extremely confused when you take him out of his home and routine. If he is already getting lost, you cannot take the chance of him wandering off in a strange location. Put TILE gps trackers on his phone, keys, wallet. It will track the item and your husband.
He should not be driving. If he gets into an accident, your insurance company will not cover it. You will get sued for everything you own. Have his neurologist tell your husband that he can no longer drive.
Here are a few suggestions: go to your local police or sheriff’s department. Through Project Lifesaver, they will give your husband a gps tracking watch that can track him anywhere in the U. S. If you do travel, go with family or friends so that you have others who can help you. There are cruise lines that have cruises for people with dementia and are equipped to handle their needs. On a side note, my husband is also a veteran. If you have not spoken to your husband’s primary care physician at the VA, do so immediately. They have an entire support team for patients with dementia and Alzheimer’s. The pcp writes the referrals for the support team appointments. I was amazed at what was covered including in home care, adult day care, supplies, home renovations. My husband is rated 100 percent, total and permanent.2 -
From what you describe, your husband is not fit to drive. You can discuss driving forever, but it most likely won’t make him stop. You need to find a way to stop his driving. There are multiple threads on this site that talk about ways to get him to stop. He is an accident waiting to happen. Do a search using the search tool at the top of the page for ideas. What works for one may or may not work for another. But, a search will give you ideas and one may work for you.
If he is circling with planning, I’d just plan with him as long as he focused, then stop. And then repeat/restart planning from the beginning as he restarts. I’d never get to the actual trip. Disney may have been your happy place before dementia, but it is crowded and noisy — both things he may not deal with well now. Add in the chance of wandering in an unfamiliar place (even if he does not wander now) and I’d stay home.
Unfortunately, his bucket list fulfillment time is done. His struggles on a trip will be more than they are at home. If you are struggling at home, being away will increase your struggles.
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I'd try a cruise or Disney vacation (it seems like Disney has a way to report that someone has memory issues so they wouldn't let them leave the park alone). Anyway, on a cruise if you get separated you can still find him, and he can't walk into traffic. My dh and I went on a delayed-by-Covid cruise about early stage 5. For me, it was more like caregiving than like a vacation, but he loved it.
We couldn't walk out of sight of the ship in any port (we were walkers), we couldn't dine in the main dining room because he didn't have patience for the process, but we did get to Solvang, which was a big priority for him and he loved it.
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My experience with DW was that the things she has been doing the longest seem to last better through progression. She was always an avid traveler. We continued leisure travel up through stage 5. I tried to learn from each trip and make adjustments to avoid problems with future trips. There were certainly lots of difficulties. I made a point of asking myself several times each day "Am I glad I chose to do this trip?". At the end of the trip, if I answered yes more than no, I would consider our next trip. Eventually we had a trip where I spent most of the time regretting the choice and that was the end of leisure travel.
As long as you do not compromise the health or safety of PWD, I think it is fine to take risks with doing things they have always enjoyed even if it is not going to be the same as it used to be. My choice was to continue doing travel until I had real evidence from lived experience that it does not work anymore.
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Thank you! I was hoping to hear that some are still able to travel. I'm still very concerned about taking a trip and it wearing him out (and me), but he wants to travel so badly. And I miss it, too. Thank you again!
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I would love any advice you have on getting help and advice through the VA. We have tried and the only help I've received is a book on being a caregiver and an invitation to a weekly video group.
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My DH is probably late stage 4/early 5 and is fairly high functioning overall but he does not remember anything in recent past. We took a quick overnight trip last summer and, while we enjoyed it, I found that it was very stressful for me and I also came to realize that he didn't remember any of it afterward. I'm not really sure that going on "bucket list" type trips for the sake of giving my own DH a great experience are worth it anymore, since he does not remember it anyway.
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Travel is something I miss the most. I've pretty much given up on it except for going to visit family. At least he's familiar with the people we are visiting, we stay with my sister for a few nights and then we move on to a hotel that we always stay at to be near my two sons. He's familiar with that hotel and our visits with kids and grandkids is kept a little shorter just because they range in age from 4 to 22 and sometimes it can be pretty chaotic. Yes, it's still a crazy dance packing for both of us, organizing everything, but I feel like this is some travel that at this point we can still manage.
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my husband was a 100% disabled veteran. The VA has different levels of care. Have you spoken to his Social Worker. If he is homebound you can get caregiver support or respite care.
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the link for VA care: they also have Catastrophic Care for those not 100% disabled.
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He's been 100% since 2012, but we've never had a social worker. I feel like I have to jump so many hoops. I had to push for his cognitive testing for 2 years. Thankfully, a new neurologist took over last year and she is incredible. I'm just lost and overwhelmed with everything I need to do with this moving so quickly.
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This is such a hard question because everyone is so different. But I can tell you what I experienced ….
My sister, who was maybe mid-stage 4 at the time, wanted to go to Sicily/Italy. It really was her bucket list item. I wanted to make it happen for her, but was worried about everything you're worried about.
My therapist advised against it, but said if we were determined to do it, we should consider a cruise so that my sister could make a little mini-routine (same bedroom, same restaurants, etc). So that's what I did. I took care of every single logistical issue I could think of, including booking a cruise. And - it went well. It was definitely not a vacation for my s.o. and me, but my sister had a great time. Yes, there were a couple of mini meltdowns, but she forgot all about those and only remembered the good time she had.
I also realize we were incredibly lucky. Anything could have gone wrong. I tried to plan for every eventuality, but you know how things are.
Really, truly assess your husband and decide if he can make any more trips.
In my case, Peggy was not incontinent, she had a lot of cognitive reserve, and she was determined to have this experience. She was super motivated to get to Europe, so all of those things worked in her favor.
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What kind of help are you looking for? Do you have an assigned social worker?
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You should be able to access your social worker through your primary care dr. My DH had a primary care dr in the community but still needed one through the VA to access any additional services. He may be eligible to have a home health aide a few hours a week which could give you a break. You also may be eligible for a care taker stipend. If he is 100% disabled service connected he should be eligible for these programs but you can only access them through primary care and social work. At least that has been my experience.
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Another thought on travel is that for many people planning the trip is half the fun. Perhaps a book about a specific place (I'm thinking coffee table picture book) and lots of discussion "planning" a trip for "someday." To be clear, I'm not talking about immersing the pwd in discussions about the real nuts and bolts of trip planning, just dreaming together.
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When my wife was dianosed over five years ago, she made a list of places she wanted to visit while she could. We knocked most of those off the list. As time as gone on, it is getting harder for her to travel and more stressful for me to steer the ship. We like to go to Puerto Vallarta for a few weeks in the winter and have visited PV for many years. So here are a few things that have worked for us. We live in Oregon. There are direct flights from Portland to PV. From where we live, we have to travel to Portland the day before. stay in a nearby hotel the night before, take the shuttle to the airport. This keeps us from having to change planes at different airports. I sign my wife up for assistance at the airport, this makes it much easier to go through security and customs. An attendant on one of our flights told me about the sunflower tags when I told her my wife has ALZ. It is a tag that goes around her neck that is a sunflower. This lets them know that the person wearing it has a nonvisible handicap. My wife wears it in the airports and planes. You can order one off amazon. We also stay in the same place in PV, so she is still somewhat familiar with the resort, the staff there also know her situation. I try not to cram up each day with too many activities. Hopefully we will continue to be able to travel there a few more times, but the days are getting numbered. Most recently we took a few days to travel to the Oregon coast. Along the journey we visited with friends and relatives that we had not seen for a while. Before we were done, she was really out of wack. We tried to do too much. From that I learned that we cannot do that anymore. Good luck, travel while you can.
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For help with the VA, contact his VA primary care physician and ask for a referral for a social worker. All referrals for services go through the primary care physician. Make an appointment with the social worker and bring a notebook to take notes. The social worker will discuss all of the available service providers and services that are available. You can also request a physician through community care if you are not happy with the doctor you are assigned to. Our neurologist and neuropsychiatrist are through community care. A word of caution: my husband easily passed the cognitive tests given to him through the VA. You need more extensive testing than what they will provide. Make sure that there is a geriatric psychiatrist in his care team. Many patients need medication prescribed. If you have more questions, ask. I am happy to help you.
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This is very helpful.
His neurologist is great, but his PC is a joke. The neurologist has to run circles around the others to get things done for him. She sends constant "recommendations" to his PC team, but both she and I have to call/message over and over to get things done. And, despite our changing things in the system and even though the person at the VA that is supposed to take care of things, they still call his phone instead of mine, so he takes the call and then forgets they called.
He is on the Rivistigmine patch and another med for focus. We have an appointment with PC in two weeks to adjust the focus meds. It's just not doing it. She insisted on starting with multiple doses a day instead of what the neurologist ordered, and she changed the recommended dose. Now we have to argue with her again.
I'll ask for a social worker and a geriatric psychiatrist. He has a therapist that he does video visits with, but they cancel more than they meet with him. When we've asked for more resources, they have sent him to aromatherapy classes and now have him doing CBT classes. Even that therapist thinks it's crazy for him to be assigned CBT because he cannot remember anything to apply the techniques. But she is very patient and just spends the time talking with him about things he likes to do.
What other questions should I ask? What services should be available? We are in KY, so many things are either not run effectively or not offered at all. And our community care options are usually not an option at all. We've gotten the referrals only for the doctors to tell us they are no longer accepting VA patients or they are on years long waiting lists for VA patients. One bluntly told us that they were not being paid for the visits by the VA, so they are no longer taking patients. :(
I think our big problem is that when we go in for appointments, usually in the morning, he is fine. He can carry on a conversation, tell them about his problems, and answer their questions. He even jokes EVERY time on the routine questions to start the appointment, but thankfully the nurse knows him and teases him back. Only the neurologist talks with him long enough to experience his looping and his disorientation.
We went to SAMs this morning and he was fine. We were walking the aisles and he was using the app to scan our items. Of course, we stopped to look at all of the discount cards for a Disney trip! About halfway through, he started putting his phone away and I kept having to prompt him to get it back out and scan the items. When we got home, he got out of the car, came in the house and sat down while I struggled to lug in all of our groceries. This is NOT my husband. He has always been so helpful around the house and usually works far more than I do on chores. But then, he started asking about the Disney trip again. I logged him on to look at the two resort options we usually stay at (we are DVC and have to book with availability before they are gone) and he could not remember them or where they are in relation to the parks (monorail, walking, and skyliner vs bus rides). He couldn't even remember which was our "home" resort or the name of the ones where we typically stay. I was on my own computer and finally just booked us 6 nights in January. I am too scared to do a longer stay, but he is just so wanting to go back to Disney.
I'm just not doing well with this. He's been my best friend forever and we've done everything together forever. We were both teachers, then he became a principal, we both volunteered with Special Olympics, and we have travelled together everywhere possible (for us). We even sold our house and lived in a motorhome to travel the country after he was diagnosed with the Dercum's and was having trouble doing his duties as a principal. We did that for over 5 years until Covid stopped us and we settled in a house again. Then his mom came to live with us and passed away after a year from dementia. After that, things seemed fine (or like they had been for almost 10 years). Then he has started going downhill rapidly about 2 years ago. Especially in the past 9 months.
I feel like I should be handling this better because we did this with his mom. But we did it together. And she was already stage 5 when she came, so we were just thrown into the really hard stuff. Still, we did the hard stuff, then laughed with each other afterwards. We had poop smeared in our hair - we laughed. We woke up with her standing over us in our bed - we laughed. We called the paramedics for the 100th time to help get her up from the floor - we laughed. She called us the nursing home staff and told us we deserved a raise - we laughed. She told us stories about her escapades (oh my!) before she married (and we learned his older brother was not his dad's!!!) - my husband wanted her to stop talking, but we laughed. We did it together. This just feels so much worse. I just don't know how to do this for him. I don't know how to do it with him, instead of TO him. We don't laugh. I cry. And he gets sad.
I really appreciate your replies. Knowing I am not alone does help, but I still just don't know what to do or how to do it. I've always been the one that takes care of everything for everybody else. I am the fixer. Yet in this, I am ignorant and I don't know what to do. I am lost.
Thank you again for your advice. I need it and appreciate it so much.
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First HUGS to you as this is overwhelming for most of us at some point along the way. Keep checking in here and you will find the gems that will work for you and your loved one. Regarding your up coming trip to Disney. My DW went to Disneyland last summer when she was in stage 4 with family as one of her wish list items. They all LOVE Disney on a level I can't compute. The family has gone many times before so understood the complexities of modern Disney with FAST Passes, electronic notifications, special offers, and much more. They were there for a week. It took a TEAM of 4 adult family members to make this trip successful and not overwhelming for any one of them. I am forever thankful they took on this wish of hers and it has ended up as the one time I will have a respite on this journey. Maybe you can get help with the offer of a Disney trip to family and/or friends. Help will make this so much better for you both. Keep us posted
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”Am I glad I chose to do this trip” This advice made me laugh. We just returned from a trip and I can now say NOPE. The work and stress definitely too much for me.
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Navigating through the VA is not easy. We have had six primary care physicians in two years! We are constantly asking for services and have to go over requests repeatedly. Unfortunately, the pcp controls the referrals. Having said that, a pcp is NOT a neurologist and should not be changing medication that was prescribed by a neurologist. A geriatric psychiatrist should be able to adjust the medication. We found speech therapy and physical therapy to be the best options. The social worker will give you a list of all available services including transportation to and from your home to VA appointments and adult day care which is fully covered. They supplied us with a white board to keep daily reminders, a tracking and fall device, medical supplies. All medical supplies including pads to cover beds and chairs along with adult diapers are free. If you need a ramp installed, a walker, wheelchair, it’s free. If he is 100 percent, they will cover in home care and out of home VA nursing home placement or a stipen through Aid and Attendance for a memory care facility that will be paid out of pocket. The social worker will explain all of this. Burial at a VA cemetery is half the cost of a burial in another cemetery. The VSO at the VA will give you the form to fill out for the VA cemetery. Keep a notebook of all doctor visits and information on agencies that provide in home care through the VA. Most I contacted allowed up to 100 hours per week. If you haven’t applied for Caregiver or Aid and Attendance, do it now. His PCP has to fill out the paperwork. Give the PCP detailed notes on symptoms and behaviors. Do not discuss this in front of your husband. Contact the Elizabeth Dole Foundation. They help vets and their caregivers. Fill out the online form for assistance. They will contact you by phone. As far as traveling, I would not go alone with your husband. He is too far along to be safe there. The chance of him getting lost and wandering is high. He will be confused and disoriented. Below is a link for who to contact for assistance with the lack of services and medical care provided through the VA.
https://www.google.com/search?q=who+do.tou+contact+when+you+are+100+percent+rated+and+aren%27t+getting+medical+services+by+the+VA&rlz=1CDGOYI_enUS630US722&oq=w&gs_lcrp=EgZjaHJvbWUqBggEEEUYOzIGCAAQRRg8MgYIARBFGDwyBggCEEUYPDIGCAMQRRg8MgYIBBBFGDsyBggFEEUYOzIGCAYQRRg8MgYIBxBFGDkyBggIEEUYOzIGCAkQIxgn0gEIMzkyOWowajSoAgKwAgHiAwQYASBf&hl=en-US&sourceid=chrome-mobile&ie=UTF-8#lfId=ChxjMe2 -
YOU ARE INCREDIBLE. I'm taking notes and have a new appointment for Thursday to speak to a liaison that may be able to get us scheduled with everyone else. Fingers crossed.
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I am happy to hear this. Keep me posted. Once he is set up with a geriatric care team, the process is much easier. The care provider sets up appointments, not the primary care physician. Get information on how to log on the VA website with his log in information so that you can access his medical team and medical records. You can send secure messages on that portal. There is an app for your phone as well.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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