I try to make sure I have all of the equipment with me but have learned that you can buy it when you get there. I travel with my husband anywhere from three to seven times a year and I find it refreshing. Yes it is more difficult than being at home but I find it worth it. If you are thinking about it go on a short trip just a few hours away from home. Try to relax and take deep breaths to help you get through it. I found that the more I tried it the easier it got.
Each individual is different of course. It's a difficult position for a caregiver to be in because you want them to get exercise, be engaged and be happy. My mother is now to the point that it would be too difficult for her travel without more than (only) me helping. Making all the arrangements (dealing with agents), paying for it is a hassle these days... Let alone having to take care of them at the same time. I also have experienced where other relatives are clueless (or car less) about their handicap needs. So, it's becoming easier to not make long trips... And, safer for the... And You!
My sister & I took my 90-year-old father to Florida last month for 9 days. Many of you may remember as I asked for tips & suggestions on his forum before we went....
It was the BEST TIME EVER. Pop hadn't traveled for years (My folks used to drive from TN to CA every other summer to visit his family) - he loves the sun & the ocean & flying. Mom had been unable to do much these last few years - he was her caretaker - and she passed away in April. The trip came about when I learned of the UDT/Navy Seals Museum Muster - along with the WWII UDT Veteran's Association Reunion.
He's in great shape,,,but he IS 90...we took it slow, set up all the airlines for "disabled" traveler - made sure there were no "rushed" flights (layovers). The first 3 days there were several events each day, so he had a written agenda and we participated in only what he wanted to do and for as long as he wanted to do them.
For the first 4 days of our trip, we booked a hotel right on the beach with a balcony - it was handicapped accessible - perfect. He had his morning coffee on that balcony and we spent quite a bit of time walking along the beach or just sitting there talking & enjoying the sunshine. Then we took a 3 hour car trip to my daughter's house in Ft. Myers & finished the last of our trip at her house. We went to parks, nice lunches, a wildlife park (drive or walk), another beach, a farmer's market....not exactly parasailing or surfing,,,,but relaxing and full of laughter and family.
Traveling with my father was not the most relaxing for me as his "caregiver" - his needs & schedule were #1 in my mind always - watching him to see if he is hungry, tired or if he has enough diapers...lol. The trip was all about my father. It warmed my heart to give him this adventure - to lift his spirits out of his grief for a spell; to let him feel the ocean spray on his face and the warm sand beneath his bare feet; to remind him how the ocean looks at night and see another beautiful sunrise over the waves.....I could go on. Despite the MANY hours of planning, the concerns about traveling with an elderly person, the daily tasks that still had to be taken care of.....I would do it again in a heartbeat. I want these things for him while he's still with us and I selfishly want the moments I get to share with my father during these adventures.
Awesome, and well written! I traveled from WA State to OK with my 80 year old mom (still sharp), we did need to slow down though. As our trip consisted of changing planes I gave extra extra time for lay overs which I highly recommend. But, on the trip home we got stuck at LAX overnight lol I told her it was one to put in her "been there done that" bucket list.
GodIsMyStrength, how I remembered 30 some years ago asking my Mom if she and Dad would like to go visit her sisters out of State, and Dad would want to start packing, but Mom never wanted to go.... every couple of years I would ask again.... and again.... and again.... but Mom always said no.
Now Mom is 96 and her two remaining sisters passed on last year, one was 100 years old. She was close to her sisters, exchanging telephone calls and letters. The only thing I could think was that she wanted to remember her sisters as they looked 30 some years ago.
Roland1956 your story inspired me that there still a person out there who would do as much to take their loved one. May you be blessed with strength, courage andn patience in your everyday life.
One thing to consider as well is how long they have left. My mom loved Elvis Presley so we are taking her on a road trip this weekend. It is an 8 hr trip and we know it will be very challenging. We will be stopping for bathroom breaks but taking her to a place she always wanted to go would be priceless. A lot of things to watch out for and consider but we get so hanged up I how hard it is to take care of them that we sometimes fail to realize that they only have little time left. We regret the times not taking her to places when she was able to. So, we do even little things or short drives when ever we can. She is like a baby, she enjoys being in the car.
Roland1956, I was so glad you had a very positive experience with your Mom coming and going through the airports and TSA security.... it's crazy enough for those of us who are mobile, and can be difficult if one didn't plan ahead and visit the TSA website. You did all the right things and it was smooth sailing.
Way too many times there will be a negative story about TSA and their Officers, and 95% of the time it was because someone didn't plan ahead and learned what can and cannot be brought onto a plane. And dressing like Mr. T. would cause issues going through the metal detectors :)
Ours was a wonderful, blessed, vacation, change of environments for both my mother and we.
Three weeks ago, in late June 2014, I traveled with my 90 year old mother, who has Alzheimer's Dementia, Diabetes and Hypertension, and was dealing with soon-to-be-treated Anemia at the time, from Fort Lauderdale, Florida to Syracuse, New York to attend, and to participate in, the wedding of a long time friend --- we met at Harvard University in the Summer of 1980.
Before accepting his invitation, I shared with him the fact that I would need to travel with my mother, as her primary care giver, AND only child, to his wedding. That I had no option, or desire, to leave her with cousins, or in an institution (as I keep her in her own bought and paid for home).
He emailed back to ask what were my needs. I responded. And, he paid for two round-trip airline tickets (with special wheelchair/senior seating and gate-to-gate assistance arrangements that I set-up) and hosted us in one of the many Senior Assisted Living Facilities he owns (and arranged for home care assistance in addition to the majority of her services provided by me). Both of us slept there, ate there, watched TV there, etc.
While my mom did not attend every wedding event, or groomsmen events with me, she was included in key events, the Friday evening pre-wedding dinner, which was at the facility itself.
The wheelchair/seat transfer/security check processes, and related services provided by the airline, Delta, and the Transportation Security Administration/TSA, were STELLAR, OUTSTANDING, and, like my friend's airfare and lodging services/gifts, were GOD-SENT!
ALL,both my, and my mother's, Florida to New York journey were welcomed respites from our normal day-to-day life in South Florida, paradise though it may be!.
(By the way, both my mother are I are native Floridians, and seventh and eighth generation Floridians, respectively. She was born near Tallahassee, in the north, and I, in Fort Lauderdale, in the south, and my late father, in Miami.)
In preparation for this trip, the first long-distance air travel taken with her since her Alzheimer's Diagnosis in 2006 (though she, my dad, and I traveled across the nation, and world, prior his death in 1988, and her diagnoses), I contacted he airline, Delta, and visited, and studied, the TSA's website. To my surprise I found a treasure trove of RICH, VALUABLE, and GENEROUS information on the TSA website.
I even printed out, and laminated, the TSA's "Notification Card" that I gave to EVERY airport and airline official encountered to inform them, in a discreet and confidential way, the medical issues faced by, and medical needs of, my mother and the assistance she would need en route, before flight, in flight, and on landing, after flight. I was also able to carry, use, and ship her personal wheelchair, though she also used the airline's smaller wheelchairs to get onto, up and down the plane's aisles to, and into/out of, her seats, and to exit the airline, at no additional costs, to carry ALL of her medicines and medical equipment (two bags, in addition to our carry on, and one checked bag), again, all at no additional costs. (Know that this "Notification Card' did not exempt my mother, or me, from any typical passenger security checks, it simply facilitated, and made painless, the process (e.g., she did not need to get up out of her wheelchair, and stand -- though she is ambulatory --- to walk through the scanner).
Overall, my mother, and I, as her primary caregiver, had a THOROUGHLY ENJOYABLE AND BLESSED week in upstate New York.
In a week, following this test run between south Florida and upstate New York, we shall be travelling to north Florida for her/our Family Re-union (on her father's, my grandfather's, side) where she will be recognized as the oldest family member attending. (Though she is not the oldest in the family as she/we has an aunt/grand-aunt who celebrated her 105th birthday in August, 2013, last year, in Detroit, Michigan.)
I am certain that this next trip will be even more enjoyable, refreshing, and blessed despite the fact that we will be staying in a hotel --- an Americans with Disabilities Act/ADA compliant hotel, I might add --- not a licensed, 24 hour Senior Living Facility, like the one in New York.
Again, thank you for your article, and for the rich confirmations contained therein, that traveling with our infirmed elders can be a fulfilling, inspiring, and new memories-creating experience for all involved.
My husband and I recently traveled with my MIL. It was horrible and we will never, ever do it again. MIL didn't enjoy it and neither did we. It made her anxious to be away from her "best beloved," as she calls him, her 90-year-old alcoholic boyfriend who's a shouting, incontinent freeloader who struck a goldmine when he latched on to a wealthy "widow" as she's now calling herself.
MIL divorced my husband's father decades ago. He subsequently died, so technically she's not a widow, but she likes to tell people she is, especially people whom she thinks are not "sophisticated." She, on the other hand, considers herself to be one heck of a sophisticated lady. Why, she once ate a marijuana brownie! And some of her "friends" (read that paid employees) aren't white! And she's living with a married guy, which makes her ultra-sophisticated. Never mind that he's essentially a gigolo: a withered, wizened, incontinent drunk gigolo. Go MIL!
Our trip was a nightmare from the get-go. MIL she was worried about drunk boyfriend. Never mind that he had three of this children visiting to keep an eye on him, she was champing at the bit to get back to him. (possibly because she imagined another woman would steal him away in her absence. If only!)
She complained about the cab driver whom we paid to pick her up and take her to the airport. (We met her at our destination.) He talked too much, meaning MIL who LOVES to talk non-stop couldn't get a word in edgewise. And he tried to "make" her sit in the passenger seat. She refused, because that's the "death seat." WTF? She always sits in the passenger seat when we drive her anyplace, often arguing that she doesn't want to wear a seatbelt.
At the hotel, she was baffled by the card key to her room.
"This is not a key. This is some kind of credit card," she sternly told the clerk at the front desk upon being handed the dubious object. She'd seen (and used) similar card keys before, but she acted like it was completely strange to her. It didn't help that she was given another key, this one an old-fashioned metal key, to the mini bar in her room. She kept trying to use it to open the door and got angry when it wouldn't work.
She refused to let the chamber maid into her room to clean and make the bed because, "I stayed in a place once, and the maid stole all my clothes!" That was a seedy hotel where she stayed once during a snowstorm years ago, while she was still teaching college. At the time, she'd delightedly told us that it was a "bordello," (MIL imagines shady sex is going on everywhere, all the time) but this was the first we'd heard of all her clothes being stolen.) I doubt it's true.
The trip kept getting worse, with MIL making snide comments about strangers' appearances and criticizing us for eating "the wrong kind of food," (Thai food, flatbread pizza, and eggs Benedict were all "wrong.") And then there were the constant questions. "Where are we going next? Are we staying in the same place again tonight? How long will we be here? Who will pick me up at the airport?"
On and on and on... Then there was the grand finale, when we put her on the plane to send her home. She got into an argument with a TSA agent over taking off her belt. She needed the belt to hold up her pants. It was a very expensive belt. Her friend gave it to her and it cost "a lot of money." (I'm guessing $30, tops.) Someone might steal it if she put it in that plastic bin. You can never tell about people who work in airports; some of them steal passengers' possessions. (This she said to a TSA employee.) I was hoping he's taze her at that point, or at least haul her off to a remote room and cuff her around a little, but she was finally allowed to pass through the checkpoint without her belt, which she forgot to put back on after passing through security and we had to go back for.
There were lots of other fun bits, but those are pretty much the highlights. Both husband and I swore we would never travel with her again, until she's either in a coffin or reduced to ashes in a suitable "sophisticated" urn.
Best of all, she later told us how nice it was of her boyfriend's daughter to pay for her cab and the hotel. Husband and I paid for that!
Great article. I wish I had some of the information when I was dealing with my own mom. I especially liked the warning signs of anxiety and agitation; I learned about the sun downing the hard way, and wasn't sure what it was until someone told me. Keep the tips coming!
Here is an idea that I got from someone else. I have little business card size cards that I made up that says..."The lady I am travelling with has Alzheimer's. Please be patient with her" I took and put these in an Altoid container and when we go out to eat I give it to the server...also when we had to take my dad to a specialist so they understood.
Good ideas!! We took my mom (Alzheimer's) and dad on a cruise two years ago. We used command strips to place alarms on the door along with a sign that read KEEP OUT. We were next door...and came over to give meds and get ready for bed. We keep the TV on when she was in the room. I got an ER bracelet that I put her info on and attached to her wrist...That she has Alzheimer's and she was traveling with me and my room number. They have special wrist bands for children to find their way to the mustard stations if they are not with parents or get separated. I requested them to put one of those on mom as well. We made sure the porter and all other staff was aware of the situation. We had a great time and I know my dad really enjoyed it. And the mom I knew who I had to fight with everyday at home to get up...was up and ready to go each morning...it was crazy.
I have traveled with relatives who have had Alzheimer's and who had physical ailments. I have always enjoyed it. Here is what worked for me. (1) No planes or buses. We always chose the pleasures of train travel or renting an SUV for comfort. The only exception to this is when we traveled to Europe. (2) Make plenty of pit stops to rest, use the bathroom, and move around. (3) Limit hours on the road. (4) Check into a comfortable hotel/motel and let the staff know in advance about the special needs. You'd be surprised at how helpful people can be including noticing if someone with Alzheimer's is on the loose. (5) Use room service and take out to keep away from loud, confusing crowds. (6) Visit places that interest the senior. My grandmother with Alzheimer's had a passion for gardens, fine paintings and opera. Naturally we included public gardens, art museums, and opera in vacations with her. I love these things too- because of her. (7) Carry along plenty of clothing and supplies including medical supplies, insurance cards, bottled water, meds, copies of prescriptions, doctor phone #s, and every day needs such as adult diapers, lotions, etc. (8) If the senior has favorite comfy robes, gowns, slippers, be sure to take them. A favorite pillow or cup? Take them too. (9) Take a LOT of photos and make some warm memories. Be patient. How would you feel if you were in your loved one's place and had lost control of your body or life or ability to do what you want? Be kind.
jacbec was being bluntly honest... I totally understand his comment. Just a trip to a different store can be slightly irritating. My Mom likes to know every street I turn on before I turn. While we're driving I get a blow by blow of the streets she would turn on instead of the ones I've chosen. Add her imaginary brake and flailing hands when one has to respond to a driver that cuts in and weeeoh, it is a challenge to keep my patience. Now, that said, my brother and sister-in-law, bless their hearts, are taking a road trip with Mom in an adjoining state for a cousin's wedding. They've made all hotel and travelling arrangements and are prepared for Mom. We always try to deal patiently with Mom's travelling antics so, here we go again.
dicedd, it is always a balancing act and a guessing game, isn't it? How much is too much? When does backing off become too little?
How does this person do with shorter bouts of unfamiliarity? Will taking the trip with familiar people help lessen the stress of unfamiliar places? If it is possible to have some short trial trips before the big one, that may help you decide how much is too much?
I'm worried that a three hour car trip to a home on Lake Michigan with family will cause agitation due to unfamiliarity, but also recognize the need for stimulation.
Actually, gagak, I think our approaches to caregiving are pretty much the same. We are each doing with our loved ones as much as we feel is best for them at their current stage in the disease. Exactly what that turns out to be is different, but the approach is pretty similar, don't you think?
We're proof that there's no one-size-fits-all approach to caregiving. I'm glad you're able to have the adventures with your husband. Any time we can spend to make their world a little better is time well spent.
I stopped doing the trips and vacations with my mom because they caused anxiety in her and were extremely stressful for me. Dementia, constant bathroom going, airport security and general frailty did not make for a pleasant trip. Instead we took day or half-day trips--to the ocean, park, museums, scenic drives.
You are right, jacbec, it isn't much of a vacation for the caregiver. I have travelled with my now 86-y-o husband with dementia for nine years. Caregiving on the road is much harder than caregiving at home. I return exhausted and in need of a vacation myself!
Why bother? Here are my reasons -- they won't match every one else's.
1. It is good for my husband. His dementia specialist, an internationally-respected researcher at the Mayo Clinic, says "novelty-seeking experiences are theraupeutic." Stimulating the brain with new sights and sounds and experiences is good for reducing the dementia symptoms. This may not be true for all types of dementia (Hubby has LBD) and in all stages, but as long as it is true for us, I'll continue to bother. 2. He enjoys it. Lord knows dementia has robbed him of many of the simple pleasures most of us take for granted. I want to continue to provide the pleasures that are still available to him. 3. I enjoy aspects of it, it spite of all the work it is. The Grand Canyon is spectacular and inspiring and awesome whether you are seeing it as a carefree tourist, the tour bus driver, or a harried caregiver. And the novelty is good for my brain, too! 4. Especially reenforced with a lot of photographs and souveniers, it is a mutual experience to talk about for months to come. It is something for Hubby to look forward to, it is stimulating to experience, and then it is something to re-experience by sharing photos and wearing the t-shirt! 5. Even though it is more work than staying at home, it is good to have a change of environment, no phone calls from work, no obligation to answer emails, no laundry to do, and no dishes to wash. It is work, but it is a different kind of work, and that is a good break from time to time.
And that is why I bother.
Hubby's dementia is progressing and I'm getting older, This isn't getting easier, but I'm still going to bother. For the vacation we're going on next week I've arranged for family members to drive us to and from our departure destination. A daughter is travelling with us, to help. We are not leaving the country. We'll sleep in the same place and eat our meals in the same dining room for the entire trip. We are taking a cruise around Lake Michigan! I'm printing up little business-size cards that say "Thank you for your patience. My husband/dad has Lewy Body Dementia," to help smooth over any small mishaps.
I suggest that caregivers not consider these trips a vacation, and that they also get respite time throughout the year. But as long as you are not disappointed that it isn't a vacation, it can be a rewarding experience worth bothering about.
Thanks for these great ideas! It's good to know that with a little planning and scaling your trip to meet everyone’s needs, you can still get away and have an enjoyable time. Thanks, Renata, for the advice!
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Caregiving Tips for Traveling With Seniors
Stay at home.
It was the BEST TIME EVER. Pop hadn't traveled for years (My folks used to drive from TN to CA every other summer to visit his family) - he loves the sun & the ocean & flying. Mom had been unable to do much these last few years - he was her caretaker - and she passed away in April. The trip came about when I learned of the UDT/Navy Seals Museum Muster - along with the WWII UDT Veteran's Association Reunion.
He's in great shape,,,but he IS 90...we took it slow, set up all the airlines for "disabled" traveler - made sure there were no "rushed" flights (layovers). The first 3 days there were several events each day, so he had a written agenda and we participated in only what he wanted to do and for as long as he wanted to do them.
For the first 4 days of our trip, we booked a hotel right on the beach with a balcony - it was handicapped accessible - perfect. He had his morning coffee on that balcony and we spent quite a bit of time walking along the beach or just sitting there talking & enjoying the sunshine. Then we took a 3 hour car trip to my daughter's house in Ft. Myers & finished the last of our trip at her house. We went to parks, nice lunches, a wildlife park (drive or walk), another beach, a farmer's market....not exactly parasailing or surfing,,,,but relaxing and full of laughter and family.
Traveling with my father was not the most relaxing for me as his "caregiver" - his needs & schedule were #1 in my mind always - watching him to see if he is hungry, tired or if he has enough diapers...lol. The trip was all about my father. It warmed my heart to give him this adventure - to lift his spirits out of his grief for a spell; to let him feel the ocean spray on his face and the warm sand beneath his bare feet; to remind him how the ocean looks at night and see another beautiful sunrise over the waves.....I could go on. Despite the MANY hours of planning, the concerns about traveling with an elderly person, the daily tasks that still had to be taken care of.....I would do it again in a heartbeat. I want these things for him while he's still with us and I selfishly want the moments I get to share with my father during these adventures.
Now Mom is 96 and her two remaining sisters passed on last year, one was 100 years old. She was close to her sisters, exchanging telephone calls and letters. The only thing I could think was that she wanted to remember her sisters as they looked 30 some years ago.
Way too many times there will be a negative story about TSA and their Officers, and 95% of the time it was because someone didn't plan ahead and learned what can and cannot be brought onto a plane. And dressing like Mr. T. would cause issues going through the metal detectors :)
THANK YOU!
Ours was a wonderful, blessed, vacation, change of environments for both my mother and we.
Three weeks ago, in late June 2014, I traveled with my 90 year old mother, who has Alzheimer's Dementia, Diabetes and Hypertension, and was dealing with soon-to-be-treated Anemia at the time, from Fort Lauderdale, Florida to Syracuse, New York to attend, and to participate in, the wedding of a long time friend --- we met at Harvard University in the Summer of 1980.
Before accepting his invitation, I shared with him the fact that I would need to travel with my mother, as her primary care giver, AND only child, to his wedding. That I had no option, or desire, to leave her with cousins, or in an institution (as I keep her in her own bought and paid for home).
He emailed back to ask what were my needs. I responded. And, he paid for two round-trip airline tickets (with special wheelchair/senior seating and gate-to-gate assistance arrangements that I set-up) and hosted us in one of the many Senior Assisted Living Facilities he owns (and arranged for home care assistance in addition to the majority of her services provided by me). Both of us slept there, ate there, watched TV there, etc.
While my mom did not attend every wedding event, or groomsmen events with me, she was included in key events, the Friday evening pre-wedding dinner, which was at the facility itself.
The wheelchair/seat transfer/security check processes, and related services provided by the airline, Delta, and the Transportation Security Administration/TSA, were STELLAR, OUTSTANDING, and, like my friend's airfare and lodging services/gifts, were GOD-SENT!
ALL,both my, and my mother's, Florida to New York journey were welcomed respites from our normal day-to-day life in South Florida, paradise though it may be!.
(By the way, both my mother are I are native Floridians, and seventh and eighth generation Floridians, respectively. She was born near Tallahassee, in the north, and I, in Fort Lauderdale, in the south, and my late father, in Miami.)
In preparation for this trip, the first long-distance air travel taken with her since her Alzheimer's Diagnosis in 2006 (though she, my dad, and I traveled across the nation, and world, prior his death in 1988, and her diagnoses), I contacted he airline, Delta, and visited, and studied, the TSA's website. To my surprise I found a treasure trove of RICH, VALUABLE, and GENEROUS information on the TSA website.
I even printed out, and laminated, the TSA's "Notification Card" that I gave to EVERY airport and airline official encountered to inform them, in a discreet and confidential way, the medical issues faced by, and medical needs of, my mother and the assistance she would need en route, before flight, in flight, and on landing, after flight. I was also able to carry, use, and ship her personal wheelchair, though she also used the airline's smaller wheelchairs to get onto, up and down the plane's aisles to, and into/out of, her seats, and to exit the airline, at no additional costs, to carry ALL of her medicines and medical equipment (two bags, in addition to our carry on, and one checked bag), again, all at no additional costs. (Know that this "Notification Card' did not exempt my mother, or me, from any typical passenger security checks, it simply facilitated, and made painless, the process (e.g., she did not need to get up out of her wheelchair, and stand -- though she is ambulatory --- to walk through the scanner).
Overall, my mother, and I, as her primary caregiver, had a THOROUGHLY ENJOYABLE AND BLESSED week in upstate New York.
In a week, following this test run between south Florida and upstate New York, we shall be travelling to north Florida for her/our Family Re-union (on her father's, my grandfather's, side) where she will be recognized as the oldest family member attending. (Though she is not the oldest in the family as she/we has an aunt/grand-aunt who celebrated her 105th birthday in August, 2013, last year, in Detroit, Michigan.)
I am certain that this next trip will be even more enjoyable, refreshing, and blessed despite the fact that we will be staying in a hotel --- an Americans with Disabilities Act/ADA compliant hotel, I might add --- not a licensed, 24 hour Senior Living Facility, like the one in New York.
Again, thank you for your article, and for the rich confirmations contained therein, that traveling with our infirmed elders can be a fulfilling, inspiring, and new memories-creating experience for all involved.
In God's Peace and Love,
Roland
MIL divorced my husband's father decades ago. He subsequently died, so technically she's not a widow, but she likes to tell people she is, especially people whom she thinks are not "sophisticated." She, on the other hand, considers herself to be one heck of a sophisticated lady. Why, she once ate a marijuana brownie! And some of her "friends" (read that paid employees) aren't white! And she's living with a married guy, which makes her ultra-sophisticated. Never mind that he's essentially a gigolo: a withered, wizened, incontinent drunk gigolo. Go MIL!
Our trip was a nightmare from the get-go. MIL she was worried about drunk boyfriend. Never mind that he had three of this children visiting to keep an eye on him, she was champing at the bit to get back to him. (possibly because she imagined another woman would steal him away in her absence. If only!)
She complained about the cab driver whom we paid to pick her up and take her to the airport. (We met her at our destination.) He talked too much, meaning MIL who LOVES to talk non-stop couldn't get a word in edgewise. And he tried to "make" her sit in the passenger seat. She refused, because that's the "death seat." WTF? She always sits in the passenger seat when we drive her anyplace, often arguing that she doesn't want to wear a seatbelt.
At the hotel, she was baffled by the card key to her room.
"This is not a key. This is some kind of credit card," she sternly told the clerk at the front desk upon being handed the dubious object. She'd seen (and used) similar card keys before, but she acted like it was completely strange to her. It didn't help that she was given another key, this one an old-fashioned metal key, to the mini bar in her room. She kept trying to use it to open the door and got angry when it wouldn't work.
She refused to let the chamber maid into her room to clean and make the bed because, "I stayed in a place once, and the maid stole all my clothes!" That was a seedy hotel where she stayed once during a snowstorm years ago, while she was still teaching college. At the time, she'd delightedly told us that it was a "bordello," (MIL imagines shady sex is going on everywhere, all the time) but this was the first we'd heard of all her clothes being stolen.) I doubt it's true.
The trip kept getting worse, with MIL making snide comments about strangers' appearances and criticizing us for eating "the wrong kind of food," (Thai food, flatbread pizza, and eggs Benedict were all "wrong.") And then there were the constant questions. "Where are we going next? Are we staying in the same place again tonight? How long will we be here? Who will pick me up at the airport?"
On and on and on... Then there was the grand finale, when we put her on the plane to send her home. She got into an argument with a TSA agent over taking off her belt. She needed the belt to hold up her pants. It was a very expensive belt. Her friend gave it to her and it cost "a lot of money." (I'm guessing $30, tops.) Someone might steal it if she put it in that plastic bin. You can never tell about people who work in airports; some of them steal passengers' possessions. (This she said to a TSA employee.) I was hoping he's taze her at that point, or at least haul her off to a remote room and cuff her around a little, but she was finally allowed to pass through the checkpoint without her belt, which she forgot to put back on after passing through security and we had to go back for.
There were lots of other fun bits, but those are pretty much the highlights. Both husband and I swore we would never travel with her again, until she's either in a coffin or reduced to ashes in a suitable "sophisticated" urn.
Best of all, she later told us how nice it was of her boyfriend's daughter to pay for her cab and the hotel. Husband and I paid for that!
(1) No planes or buses. We always chose the pleasures of train travel or renting an SUV for comfort. The only exception to this is when we traveled to Europe.
(2) Make plenty of pit stops to rest, use the bathroom, and move around.
(3) Limit hours on the road.
(4) Check into a comfortable hotel/motel and let the staff know in advance about the special needs. You'd be surprised at how helpful people can be including noticing if someone with Alzheimer's is on the loose.
(5) Use room service and take out to keep away from loud, confusing crowds.
(6) Visit places that interest the senior. My grandmother with Alzheimer's had a passion for gardens, fine paintings and opera. Naturally we included public gardens, art museums, and opera in vacations with her. I love these things too- because of her.
(7) Carry along plenty of clothing and supplies including medical supplies, insurance cards, bottled water, meds, copies of prescriptions, doctor phone #s, and every day needs such as adult diapers, lotions, etc.
(8) If the senior has favorite comfy robes, gowns, slippers, be sure to take them. A favorite pillow or cup? Take them too.
(9) Take a LOT of photos and make some warm memories. Be patient. How would you feel if you were in your loved one's place and had lost control of your body or life or ability to do what you want? Be kind.
How does this person do with shorter bouts of unfamiliarity? Will taking the trip with familiar people help lessen the stress of unfamiliar places? If it is possible to have some short trial trips before the big one, that may help you decide how much is too much?
Why bother? Here are my reasons -- they won't match every one else's.
1. It is good for my husband. His dementia specialist, an internationally-respected researcher at the Mayo Clinic, says "novelty-seeking experiences are theraupeutic." Stimulating the brain with new sights and sounds and experiences is good for reducing the dementia symptoms. This may not be true for all types of dementia (Hubby has LBD) and in all stages, but as long as it is true for us, I'll continue to bother.
2. He enjoys it. Lord knows dementia has robbed him of many of the simple pleasures most of us take for granted. I want to continue to provide the pleasures that are still available to him.
3. I enjoy aspects of it, it spite of all the work it is. The Grand Canyon is spectacular and inspiring and awesome whether you are seeing it as a carefree tourist, the tour bus driver, or a harried caregiver. And the novelty is good for my brain, too!
4. Especially reenforced with a lot of photographs and souveniers, it is a mutual experience to talk about for months to come. It is something for Hubby to look forward to, it is stimulating to experience, and then it is something to re-experience by sharing photos and wearing the t-shirt!
5. Even though it is more work than staying at home, it is good to have a change of environment, no phone calls from work, no obligation to answer emails, no laundry to do, and no dishes to wash. It is work, but it is a different kind of work, and that is a good break from time to time.
And that is why I bother.
Hubby's dementia is progressing and I'm getting older, This isn't getting easier, but I'm still going to bother. For the vacation we're going on next week I've arranged for family members to drive us to and from our departure destination. A daughter is travelling with us, to help. We are not leaving the country. We'll sleep in the same place and eat our meals in the same dining room for the entire trip. We are taking a cruise around Lake Michigan! I'm printing up little business-size cards that say "Thank you for your patience. My husband/dad has Lewy Body Dementia," to help smooth over any small mishaps.
I suggest that caregivers not consider these trips a vacation, and that they also get respite time throughout the year. But as long as you are not disappointed that it isn't a vacation, it can be a rewarding experience worth bothering about.