Transporting parent with dementia across the country
October 12, 2019 6:45 PM Subscribe
Greetings! My mother is in a declining state of dementia and lives in an assisted living facility in upstate New York, near my brother. For several reasons, my brother and I will be moving her to a memory care home in California, near me, within the next month or so. We need to act quickly as this is all happening much faster than expected.
We are concerned about the cross-country transport. Air travel would be the quickest way to go but we are concerned about the bathroom situation. My mother can go to the bathroom by herself but needs assistance on and off the commode. Airplane bathrooms are just about big enough for one person, much less two. We would also like to avoid a meltdown, as she has not flown for many years. Has anyone had experience with transporting a loved one with dementia across the country?
We are concerned about the cross-country transport. Air travel would be the quickest way to go but we are concerned about the bathroom situation. My mother can go to the bathroom by herself but needs assistance on and off the commode. Airplane bathrooms are just about big enough for one person, much less two. We would also like to avoid a meltdown, as she has not flown for many years. Has anyone had experience with transporting a loved one with dementia across the country?
Would renting an RV be an option? Not only would you be able to travel at your own pace, you'd have a bathroom right on board and maybe a TV. If she was starting to panic, maybe you could fib and tell her you were driving her wherever she said she wanted to go. "Relax, Mom. I'm driving you home now. It'll just be a little while." Depending on her level of dementia, you could just keep fibbing like that all the way across the country. If you and another family member made the trip, maybe your mother would even buy that you were all on vacation together.
posted by Ursula Hitler at 7:35 PM on October 12, 2019 [6 favorites]
posted by Ursula Hitler at 7:35 PM on October 12, 2019 [6 favorites]
Response by poster: Thanks much, honeybee413 and Ursula. Yes, renting an RV is an option. We are looking into that, as well.
posted by htm at 8:04 PM on October 12, 2019 [1 favorite]
posted by htm at 8:04 PM on October 12, 2019 [1 favorite]
Seconding Ursula Hitler; the rental RV is the choice my family made in a similar situation. Reports were that it worked out pretty well.
posted by charmedimsure at 8:04 PM on October 12, 2019
posted by charmedimsure at 8:04 PM on October 12, 2019
If air travel would work best, adult diapers would make things manageable and maybe xanax for any anxiety. A minivan and 2 drivers, staying in motels, is another good option.
posted by theora55 at 8:07 PM on October 12, 2019 [1 favorite]
posted by theora55 at 8:07 PM on October 12, 2019 [1 favorite]
For reference, there are medical transport companies for this purpose. (I'm not advising in favor, just raising the option.) They generally use what they call "medical transport vehicles" which, for the most part, are going to be like the RV suggestion made by Ursula Hitler, above. I suggest you google "long-distance medical transport services dementia" and maybe call the National Aging the Transportation Center (which seems to focus on local transportation assistance) to see if they have any recommendations or referrals.
posted by The Wrong Kind of Cheese at 8:09 PM on October 12, 2019 [1 favorite]
posted by The Wrong Kind of Cheese at 8:09 PM on October 12, 2019 [1 favorite]
Some of the wide-body airplanes do have an accessible bathroom on board. This might be one of those times when it would be best to book your flight through a travel agent to help make sure you're on a flight that has an accessible bathroom and to note on your ticket that special accommodations might be needed.
Another thought is to break your flight down into bite-sized chunks: from New York to Chicago, then from Chicago to Denver, then from Denver to California. Make sure she uses the rest room before leaving New York and at each stop. Also, have her wear Depends or other similar product just in case.
The Midwest is already getting snow - it might not be the best time to plan a cross-country drive with your mother - much less in an RV. Flying would be the safest, quickest, and possibly the least traumatic way to travel cross-country with her.
posted by kbar1 at 8:21 PM on October 12, 2019 [1 favorite]
Another thought is to break your flight down into bite-sized chunks: from New York to Chicago, then from Chicago to Denver, then from Denver to California. Make sure she uses the rest room before leaving New York and at each stop. Also, have her wear Depends or other similar product just in case.
The Midwest is already getting snow - it might not be the best time to plan a cross-country drive with your mother - much less in an RV. Flying would be the safest, quickest, and possibly the least traumatic way to travel cross-country with her.
posted by kbar1 at 8:21 PM on October 12, 2019 [1 favorite]
Response by poster: Thanks much, theora55, The Wrong Kind of Cheese, and kbar1! Adult diapers is a GREAT idea, IF she will wear them, a wide-body airplane with an accessible bathroom is another GREAT idea (I didn't even know those existed) and I hadn't even considered the snowy weather in the Midwest! Thank you, All!
posted by htm at 8:51 PM on October 12, 2019 [1 favorite]
posted by htm at 8:51 PM on October 12, 2019 [1 favorite]
I personally think that a single day's journey by air would be less traumatic overall than extending it over multiple days via any transportation method. More of a rip off the bandaid approach. My source for this is when my grandma had severe dementia it was a lot easier for her to forget about things that upset her relatively briefly than things that continued to upset her for more than a few days.
You can consult with your mom's doctors to see what kind of medications might be available for her to help make a single day's plane travel go easier, whether it's a mild tranquilizer or something to help her keep from wetting herself. Diapers are a great idea but I agree that wrangling her into them can be difficult if she's opposed to the idea.
I assume someone already has POA, guardianship, or similar set up? Ideally that would be the person traveling with her in case of any (weird, probably unlikely) emergency situations.
posted by poffin boffin at 9:19 PM on October 12, 2019 [9 favorites]
You can consult with your mom's doctors to see what kind of medications might be available for her to help make a single day's plane travel go easier, whether it's a mild tranquilizer or something to help her keep from wetting herself. Diapers are a great idea but I agree that wrangling her into them can be difficult if she's opposed to the idea.
I assume someone already has POA, guardianship, or similar set up? Ideally that would be the person traveling with her in case of any (weird, probably unlikely) emergency situations.
posted by poffin boffin at 9:19 PM on October 12, 2019 [9 favorites]
Response by poster: Thanks much, poffin boffin! Yes, my brother, sister-in-law, and I will be traveling with her.
posted by htm at 11:13 PM on October 12, 2019
posted by htm at 11:13 PM on October 12, 2019
I would talk her her doctor about some meds you can try out before you go so you don't have any surprise reactions on the way. Adult diapers look a lot more like regular underwear now but you would have a difficult situation if she soils it and then freaks out.
My father has fairly advanced dementia. He used to travel out of the country every winter. Last winter he refused to get on the next plane after the lay-over. Wasn't sure it "was in his best interest". At the last minute when my sister-in-law (in tears) bluffed that she was going on without him, he just followed her onto the plane.
I think sound can be a big problem and if you are flying I would consider getting some noise-canceling over the ear headphones and some Chopin or similarly soothing music. My father can watch what is billed on Youtube as 'relaxing nature videos' with new-age sort of music for hours.
posted by InkaLomax at 3:35 AM on October 13, 2019 [1 favorite]
My father has fairly advanced dementia. He used to travel out of the country every winter. Last winter he refused to get on the next plane after the lay-over. Wasn't sure it "was in his best interest". At the last minute when my sister-in-law (in tears) bluffed that she was going on without him, he just followed her onto the plane.
I think sound can be a big problem and if you are flying I would consider getting some noise-canceling over the ear headphones and some Chopin or similarly soothing music. My father can watch what is billed on Youtube as 'relaxing nature videos' with new-age sort of music for hours.
posted by InkaLomax at 3:35 AM on October 13, 2019 [1 favorite]
Many people I met on a recent cross-country trip via Amtrak were accompanying parents who were moving closer to them due to health and ageing issues. We'd often meet the son or daughter hanging out in the observation car or at dinner while their parent was reading, sleeping, or watching movies, etc. in their cabin. You have your choice of many bathroom styles on board, from full spacious accessible cabin-like bathrooms (shared, but between only 3-5 people usually), to tiny (but private) in-cabin toilets that are just a couple of feet away from your seats. Given that there are three of you traveling together, I think your time being 'on duty' with her could be reasonably divided. The sleeping car attendants seemed very supportive and helpful. The only thing I'd recommend in advance is taking one Amtrak's online marketing "tours" of their various cabin sizes, names, and amenities because I don't think their online descriptions and reservations agents are always in sync about what's what.
posted by cocoagirl at 4:33 AM on October 13, 2019 [3 favorites]
posted by cocoagirl at 4:33 AM on October 13, 2019 [3 favorites]
If flying by plane contact your preferred airline (if you have one) about accommodations . My mother is low vision and gets an escort because she cannot read airport signage and purchased food ingredient lists (and she has multiple allergies to contend with).
I'm not sure about help with Tolieting, but there are many people who need assistance and it will not be the first time the question had been asked. Ensure the airline knows who she is and has your contact info incase you are seperated for whatever reason.
posted by AlexiaSky at 5:40 AM on October 13, 2019
I'm not sure about help with Tolieting, but there are many people who need assistance and it will not be the first time the question had been asked. Ensure the airline knows who she is and has your contact info incase you are seperated for whatever reason.
posted by AlexiaSky at 5:40 AM on October 13, 2019
The Alzheimer's Association (a great resource) has recommendations on traveling with a family member who has dementia.
I also found this article on caregiver.com that might be useful.
Some of the advice is geared towards vacationers, but there are still several things that hadn't occurred to me that seem very helpful, like planning travel around your loved one's best time of day, and having a letter from her doctor explaining her condition.
posted by bunderful at 7:47 AM on October 13, 2019
I also found this article on caregiver.com that might be useful.
Some of the advice is geared towards vacationers, but there are still several things that hadn't occurred to me that seem very helpful, like planning travel around your loved one's best time of day, and having a letter from her doctor explaining her condition.
posted by bunderful at 7:47 AM on October 13, 2019
Response by poster: Thanks much InkaLomax, cocoagirl, AlexiaSky, and bunderful! The "sound" factor is a great point, and that article by Caregiver.com is excellent! I had never considered traveling by train! The only thing with that is, I'm prone to motion sickness and I understand train travel is one of the worst for that. If we chose that route, I might need to try it out first to see it's doable for me.
posted by htm at 8:51 AM on October 13, 2019
posted by htm at 8:51 AM on October 13, 2019
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posted by honeybee413 at 6:59 PM on October 12, 2019 [1 favorite]