Dementia Dad wants a vacation. What to do?

I lived with my husband with LBD for 10 years. We took many trips during that time, by plane, train, on cruises, and by car. As his strength declined and his problems increased, I adjusted our destinations accordingly. On our last cruise (Lake Michigan) I took a helper along. It would not have been possible for me to do it alone at that point.

My advice is take Dad on vacation if you possibly can. Maybe it can't be his ideal spot. What does he like best about Florida? What destinations are closer to him that might offer some of these things? Some of his favorite things are better than nothing, even if not "ideal."

If possible, taking someone with you that he knows and trusts would be better than hiring a stranger at the destination.

If you go all the way to Florida you may feel you should stay a while to make that travel worthwhile. If you can find suitable near-by destinations you can do shorter stays that may suit his stamina better.

I tried to get full value out of each of our trips by giving him the pleasure of anticipating it. He'd study the brochures and talk about the trip for a couple of weeks ahead. I took tons of pictures on each outing -- near or far, a couple days or a couple of weeks -- and put a scrapbook (electronically) together so he could enjoy the memories afterwards.

His LBD specialist was very much in favor of travel for him.

As an aside ... about the hallucinations. Most LBD hallucinations are benign and do not need treatment. But it sounds like Dad's are very bothersome. Have you discussed possible treatment for them with his doctor?

Jeanne, thank you so much for your reply.. Regarding his hallucinations, he has met with psychiatrists, and they have not seen this too often.. He has been prescribed Seroquel; helps a little, but not working 100%..

My thoughts would be to fly since the drive is so long. One reason is sitting for that long can cause a deep vein thrombosis or DVT. This happened recently to my dad after a 4 hr. Drive to Dallas even. So since you would be traveling without help, the flight would be a better option and the crew could help if an emergency occurred. Good luck and hope it works out.

I took my mother with Alzheimer's on a 2 1/2 hour flight to a resort in the Bahamas. The flight was fine her old memories of flying and frequent trips kicked in. In caring for her for a number of years I learned that any anxiety on her part was when she was trying to make sense of her world, So the flight went well because she just needed a few reminders as to where we were going. I always found she enjoyed going in the car and her mind just focused on the scenery or my driving! Over all the trip was a success, she needed a little reassurance near bedtime as to where we were and when we were going home. She enjoyed looking at the water and the eating in the outdoor restaurants. I had a portable wheel chair which made it easier . If you can take a second person it would help you have a little break,

A day trip somewhere is about all I'd even consider. Why would you want to put yourself in that position? What if he gets sicker and you're away from his doctors?

Sounds like maybe YOU need a vacation... leave dad home ; )

Please consider taking your dad to the closest beach from where you live. Tell him it is lovely. He can feel the sand and warmth, hear the seagulls and splashing waves and families enjoying themselves. As a former airline employee, I would not recommend taking dad on a flight. Flights these days are full, seats are small and in-flight service is far from what is was years ago. Reservations must be made in advance with notification that "special needs" are requested. There are flights depending on configuration of aircraft, that cannot handle wheelchair passengers and getting through security can be a nightmare for the most seasoned travelers. Please do not take these comments as negative. I wish you and your father the very best---however, looking at the "entire" situation as I see it, the stress of traveling a thousand miles and worrying about dad is not fair to you or to him.

I would find some place much close to home that you can drive to in a couple of hours... I don't know the last time you or your Dad had flown.... flying now a days is very time consuming as you would need to be at the airport at least two hours before your flight, thus that is a lot of time just sitting and waiting.

Then there is security, those who are wheelchair bound cannot go through the metal detectors, thus the person and the wheelchair itself need to be individually pat down... if you Dad can stand, he will be asked to stand as the security check is easier if standing....

Call *TSA Cares* toll free at 1-855-787-2227 prior to traveling with questions about screening policies, procedures and what to expect at the security checkpoint. Travelers may also request a *Passenger Support Specialist* ahead of time to help out at a checkpoint.

If it were me, I would take the caregiver to give him/her a nice *vacation* but work out the payment schedule ahead of time. My boss ran into a situation with his wife's caregiver's employer regarding hours to be paid.... my boss argued that the caregiver was given a vacation so no payment, and the employer argued the caregiver was on the clock 24 hours each day.

until last yr, I took my mom(96 in aug) on 2 week drive, then fly vacations. Last flight from fla to NY, she thought we were in fla. nieces visited from Conn and a day later she did not remember. Last yr I decided we would go to beach and get hotel on water for 2 days. Very stressful for me. I was figuring I would get up earlier and have nice walk on beach till she woke later. she had hard time geting out of bed and then because bathroom was different, she could not get up off toilet. 2 days later, she did not remember where we went and wanted to go on a longer trip.Supposed to take her later this month to disney and stay at resort with 2 nieces, great niece, nephew and his family. I hope they understand that this is my vacation also. After 2 days, she will not remember who was there. It appears to me that we put ourselves thru guilt trips that only we remember. Only because this is with 3 of her grandchildren, and 3 great-grands, that I am subjecting myself to this last trip. Better to get out the photo albums and laugh and talk about times before.

My first suggestion would be to have him return to a gerontological psychiatrist asap. Assessment, compliance, reevaluation, and adjustments are key. No one should have to suffer through hallucinations, etc. Once the hallucinations problem is resolved, travel on a cruise can be wonderful---depending. I was extremely fortunate to be able to take my sister on a cruise at just the right time. She loved planning & shopping ahead of time for a party dress, etc. She loved going to fancy dinners in the grand dining room, dancing like a teen (w/family, also in their 50s & 60s) in the nightclubs, and basking in the sun at poolside. A good gero-psychiatrist can help you determine if now would be a good time for a vacation and what type to take. If your dad seems like he'd do well on a vacation, you'll want to avoid over stimulation which can increase confusion and anxiety. If a cruise is out of the question, I would suggest considering a stay at a hotel like an Embassy Suites as there is always a beautiful atrium with lush foliage, quiet and cozy cafe seating, a patio bar, and endless paths all WC accessible. I've seen them with small waterfalls, and tranquil ponds---sometimes even stocked with rainbow trout and a couple of ducks or swans, all indoors so you don't have to worry about rain, snow, rocky terrain, etc.! (Clean facilities are always close by.) Every room is a genuine suite and I'm pretty sure you could get an attached double suite if need be. I'm sure you could find a variety of local restaurants to fit your mood/food tastes/and budget. Call the area's State/County/National Parks and the local tourist bureau so you and your dad can get info and brochures. Perhaps he'd like to visit an art museum, library, show or orchestra hall close by. Lots of cities have ghost tours, factory tours (even for ice cream or beer/wine/alcohol!) The two of you can savor every moment of planning, doing, and reminiscing for a long time! Over & over again! Also remember that wherever/whatever you decide to do, that even "ordinary" things/activities/events/movements, need to take time, ...lots of time! So, limit your daily calendar, and plan to be flexible. Taking a known relative, friend, couple, and/or caregiver can be a BIG plus as you can enjoy a little break now and then (even if only in conversation), and you both can benefit from other(s)' knowledge, perspectives, excitement about what you'll be seeing and doing. They can give you a hand now and then, but outside of hotel, food, and expenses for activities & entertainment (that you and your dad choose), I would NOT compensate anyone. (Per the note from freqflyer) I would put this agreement in writing, even/especially for relatives.
Enjoy!

You are not obligated to take him on vacation. He can stay right where he is! I find it extremely difficult to even take my husband to the dentist, who is just over a few blocks. I decided long ago that if I don't take good care of myself, eventually I will not be able to take care of my husband, either. He is very, very slow, even on his walker, he becomes very confused, and the whole situation is just not at all conducive to taking him anywhere, least of all vacation. Your loved one can just stay right where he is and be thankful that he has a loving caregiver. I simply do not give in to my husband's demands just because he has dementia. There is a limit!

a few years ago i took my husband by plane back up north because i had my health insurance there. bad trip going up. he would not stay in the seat...to small, kid in back kicking seat, guy up front had seat back. next thing i know he's in first class. "Nobody is using these seats" I told the crew about his Alzheimers. 20 min. went by and he was good. Where he was sitting i could keep an eye on him. Next thing they were asking me to get him back to his small seat. boy, what a mess that was. his calmness went and now he was arguing... i got him in the seat right behind the first class curtain and he was fine.....until he had to pee. "why can't i use that one up there" 1st class. Now he has to walk all the way to the back of the plane. I stood up and watched him go back there. he did good. was comig back to his seat and he didn't buckle his belt and DOWN went his pants...I just smiled at the passengers. i was a nut case when we got to our destination. I didn't want to fly back with him, so i called his doc. in fl. and got a couple of pills to relax him. gave him one just before take off and what a quiet flight. could not do that now.

I did take my husband on a driving vacation to Florida but I had help. Our daughter and her kids (ages 8,10, and 12) went and we stayed in a suite with two bedrooms and a full living room. I hired someone from an agency for the 5 days we were there and rented a wheelchair. He was not using a wheelchair at that time, except for when he had to walk a long time. The extra planning for dining and reserving beach chairs at times when others weren't likely to be there made it easier. The times that I needed to go to an event with the others, the agency caregiver was wonderful. The only problem was on the way there. We stopped at a motel that had outside doors. He tried to leave and sit in the car and didn't want to sleep in the room. His Serequel finally kicked in and our daughter and I guided him back and he slept well. I made sure all the locks were in place, I slept on the bed nearest the door and stacked various items against the door that would create a noise if knocked over.

The next year, we took a trip to Branson for only 3 days. Once again we had lots of help--6 grandkids, a son and daughter and their spouses and hired a caregiver from a Branson agency before we left. We took our own wheelchair that trip, as he was needing it almost constantly.

I would never have taken him on any overnight trips without the help of several other people-hired and voluntary. If you decide to go, see if you can get a son, daughter, niece, etc. to go too. When you get there, plan your adventures according to your husband's abilities and do hire some help from an agency.

Hello BunnyIL, Wondering where you are located? Any possibility you are near a lake. There are a places along the lake (here in northern OHIO) where you can rent a beach house or hotel or condo on a beach, that might be closer to home. [This is what we chose to do when taking our autistic grandson on vacation, when he was younger, and the autistic behaviors and anxieties were more of an issue. We figured, if need be, we could cut the trip short and head home at anytime, which would not be possible, going farther....It's not the same issue, but similar. ] It it's the beach he likes, might be worth looking into.

We took my Mother on a wedding destination last month. I had LOTS of help, and needed it. She was very confused and kept asking to go home, could not find the bathroom in the hotel, did not know who anyone was. It was too much for her and I would never do it again. The reality is for her she thinks she wants to go somewhere but as soon as we get there all she wants to do is "go home." Very stressful so I just do not do it anymore.

Hello bunnyL.. I note that you have not been back on this forum for the past six days to view the responses the community has given you. Maybe you're on your vacation! Seriously however I do wonder though from what your father needs a vacation. As a caregiver my first reaction to this post was exasperation. Why in Heaven's name would you even consider let alone attempt to take a wheelchair bound, blind elderly person known to hallucinate and who at times cannot recall even pleasant recent events, on a vacation to Florida, the "ideal" vacation spot? Are you vying for sainthood? If not then stay home and make home feel like a vacation for Father. Florida can be uncomfortably hot and humid for normal, well people. Staying at a good hotel would seem to be mandatory in that the things one does on a Florida vacation (swim in the hotel pool, lie on a comfy chaise at the water's edge, order a snack or lunch and drinks from the outdoor bar) in this particular situation should be easily accessed and/or should be only a hop, skip and a jump from your hotel room. This could mean booking your Father's vacation at an expensive chain hotel. Consider also that at this hotel, one necessarily with convenient "handicap" facilities as well as super nice facilities for your father's pleasure, there would almost certainly be fellow guests who have brought along their kids, because people with access to free airline travel (mileage tickets) have learned to travel with their children and are often tempted to take them wherever they go, appropriate or not. (Who am I to say noisy teens at a high-end resort or a screaming toddler seated in First Class, are nuisances but I will go ahead and say it, knowing I will incur everyone's wrath to which I say I have never enjoyed screaming toddlers even in coach class (it's often worse stuck in coach with screaming babies, if you know what I mean) and I often want their parents to pick them up and show them the sidewalk outside during the homily on a Sunday morning.) Even if you love kids as I do there's a good possibility that your Father just simply doesn't any more, and mixing them would not benefit anyone. Consider also the reaction of a couple who have spent $400 or $500 a night at a plush resort hotel. There's a good chance they don't want to share a pool area with an hallucinating elder in a wheelchair and be reminded of their own mortality. I know that I sound like something that starts with a "B" and rhymes with witch. But I am not. I am simply a caregiver who has been through unpleasantness (rare though it is) and have heard others' horror stories. With the trip as presently considered there could be "scenes" that are hurtful to your father or to both of you. (Consider also he could succumb to the heat or just be extremely uncomfortable in it.) There's the likelihood a great deal of your time will be spent getting your Father washed up, dressed appropriately, fed well and to his liking and finally comfortably out the door. This could possibly be followed shortly by a repeat of one phase or another of this equation. In your heart of hearts you must know this is so. As you said realistically you couldn't handle him and his needs on your own. So I have to ask: what could be the "good" about this vacation that part of you does want to go through with it? Did you and your father use to travel together under happier more pleasant circumstances, and does the idea of bringing this pleasure to your father again make you willing to gamble on a possibly good outcome? Then perhaps you should do it. But who would take care of your dogs? (Another suggestion would be renting a beach bungalow situated directly on the sand and taking along a second caregiver as well as your dogs. This might very well work and be a lot less effort for you. The end-result could be something like peace and comfort and both of viewing this time away as a well-deserved vacation.) God Bless and good luck with your decision.

my mom hasn't had dementia yet , but I took her to Colorado for vacation and ot was hard on her and also took her to Arkansas. That also was hard on her. She decided to move to Colorado and my sister drove here here. Florida is a long dsitance fro him to go. You need a vacation.!

I wish had had all the help.but it is a hassle to get him to agree and his family could care less...

There are agencies that put together special needs vacations. See if you can find one in your area. also check for wheelchair accessible places to stay.

Hopefully you can bring a caregiver with you and carve out some time for yourself. You need a vacation too!!!

BunnyIL, take him to a nearby hotel that a pool and an atrium with palm trees and tell him he is in FL. Stay overnight or two and take him back home.

Hello people. She says he can't see so any trip with all these visuals would not matter. Load him in the car and take him somewhere with a pool or beach (don't know where you live). Tell him he's in Florida. It would be a nightmare to fly him any where. Don't stress yourself out any more than you have already done. If you can't take him anywhere, tell him he went and let him hold some souvenirs from the beach (which you bought) and remind about the memories. That will stick if you remind him often enough.

My mother-in-law wanted to go on a cruise (we live in Florida) and we were seriously thinking about it until at Christmas we took her on a trip to St. Augustine and Georgia. My sister and her husband went along. It was a disaster. My mother-in-law snored so loud in the motel the first two nights that my husband and I couldn't sleep at all. On the third night we all stayed in a condo on Jekyll Island and my mother-in-law had her own room on the first floor. Early in the morning we heard a commotion downstairs. She thought someone stole her shoes, she had no idea where she was and she was totally disoriented. When my husband told her we were on vacation she said, 'Some vacation!" and my husband just about lost it. I had to come downstairs and sit with her and calmly explain where we were and why we were there. We were going to go to Savannah for another two nights but called the trip off and everyone headed home. As for the cruise - my husband and I went alone and told her we went south by ourselves. We had people check in on her and call her everyday. It was a very well-needed get-away for my husband and me even though she wasn't very happy about being alone for a few days. The reality of it is that she is only happy on short excursions or daytrips - and even long car rides are not enjoyable for her anymore. Recently we took her on a two hour sunset cruise and that went very well - she even remembered and talked about it today, thinking she went somewhere out of town and to an island. Actually it was only a short distance from where we live. Ironically my mother-in-law moved here 4 years ago from California and hates Florida - but that's because she is lonely and depressed about the fact that she can no longer drive and go whenever and wherever she wants. It is sad, but we live one day at a time with the situation, do what's practical and the least stressful for all of us, be realistic and take care of ourselves. Living one day at a time helps because then we don't worry about the future and what's going to happen. I used to really stress over it and it took a while for us to come to terms with the fact that moving my mother-in-law to Florida wasn't go to be a picnic - it was a huge transition for all of us - but that's life and sometimes life is difficult. My sister always reminds me of the mother-in-law in the movie My Big Fat Greek Wedding - how everyone either ignored her antics or laughed about the craziness. I don't mean to be disrespectful but sometimes it's better to laugh than scream or cry - and with the right attitude and perspective any problem can be minimized. My advice (as is also the advice of many other posts) don't take your father to Florida - take him on a day's 'vacation' near your home and have it be something different and possibly 'tropical' so he feels like he's been away somewhere - and hopefully he'll be so tired out he'll think it's been further and longer than it really was.

Bunny L: do you live with your dad? If not, move in there for 2 weeks straight, 24 hours a day, no outside help, just YOU...You are the house keeper, laundry, bill writer, bank, entertainment person, the nurse, the aide, the CNA, and sometimes the doctor, the maintenance person, chef, driver, yard guy, you are it...do it all...and also take him on short trips, to the doctor, the store, grocery store, out to eat, anywhere, everywhere. If you can handle that without screaming and crying and being stressed, then go for it. After leaving my home and moving in with my dad, just getting him into the car (wheelchair bound) for a grocery store trip can wear you out. No idea how old you are or what your health is like, but those factor in as well. No idea how your parent acts or talks or how mobile...but my dad will talk 24/7 and talk until he chokes. We did a few trips that took 11 hours one way...and it should have been 6 hours but my dad kept directing me to turn here, turn there, wrong way, do this, stop the car...and almost doubled our drive time. And non stop talking, singing, whistling the entire time. A plane ride with my dad would have had us kicked off the flight. Does your parent stop, point at people and loudly remark on them? Mine does. Try a few overnight nearby places first and remember that sometimes the parent will refuse caregiver help if you are there, they will want YOU to do it all. Good luck, pls let us know how it turns out. And by the way, every trip I took my dad....he couldn't tell you if he ever left the house and went or not....

What is it about Florida that he likes/enjoys? Perhaps you can find a spot closer to home that would have the same features that he enjoys? Maybe a day trip would be better. It is difficult to travel with someone who has both physical mobility issues and dementia, but not impossible. Maybe your father wants to relive some past event or happy feeling. Do what you can to recreate that closer to home. He may not have a lot of time left, make it as enjoyable for him as you can. Contact your local Area Agency on Aging or Bureau of Senior Services for information about programs that could assist you in caring for your father. Are there other relatives that could help you take your father on a mini-vacation? If not maybe you can hire someone to assist for a day or a weekend. Make sure you ask for references and contact them before you hire someone to assist you. Being a caregiver can be a difficult job, just remember you must care for yourself too.

BunnyL -
I live in the Washington DC metropolitan area, and I was able to drive my mother to the Ocean City, MD, and Rehoboth Beach, DE beach on Mother's Day weekend. I was (frankly) terrified to do it, but my wife was visiting her mother out of town that weekend, and I didn't know how much longer I would be able to take that trip with my 83 year old mother with Alzheimers. It was about a three hour drive each way (because of when I left and was off-season in May, luckily it was a warm weekend (thank you God).

So very early on Saturday morning, after she had her medicine I took her out to the car for a drive (which I had packed the night before). We sang songs in the car (her favorite activity) and I kept her distracted. We stopped for MCDonalds, decaf coffee (for her), and made frequent bathroom breaks. Since we got there very early, I was able to basically sail right through the Chesapeake Bay Bridge (thank you again, God), and we arrived in Ocean City before noon. I drove down to the beach and parked in a handicapped spot and took her for a walk to stretch her legs. She was surprised when we were at the beach, and she thought the ocean was pretty, but was a little afraid of walking on the sand. We walked on it for a little bit, and then we turned around and left in the car going north to Rehoboth Beach, DE.

The nice thing about Rehoboth Beach (which is a lot smaller/less people) is that it has a lot of hotels on a smaller boardwalk. OC does too, but a lot of families, kids, noise. So we went to a hotel parked, and we were able to leave the hotel and walk directly on the boardwalk. She liked that because it was flat and solid (not like sand). We walked a bit, sat a bit on benches on the boardwalk. Then we got a diet coke, sat some more, then went back to the hotel.

Now yes Mom has lots of mental delusions, etc. One thing is that she knows a lot of people she sees. They are strangers, but she thinks they are not. God Bless. Some she thinks are in movies and TV shows. OK. In terms of hallucinations, they come and go, and we just try to talk around them. Yes, I am going to see another geriatric psych, but I am really sure how much we can do.

We stayed overnight and went back early on Sunday - around 10-11 AM.

Getting her to sleep in hotel room was a little tough. But we focused on TV and newspapers, snacks, and things "normal" for her routine. Nightlights, PJs, her pink bunny that she sleeps with, etc., etc. Her pajamas were hung up in the bathroom like they were at home, and in the morning her new clothes were laid out in the bathroom like at home. I tried to keep everything as "normal" as possible. Then on Sunday, we went downstairs, had some breakfast, walked on the boardwalk again, sat and watched the ocean for a while, then sat the other way and watched people on the boardwalk, bought her a new pair of sunglasses, got some sand in a medicine vial, got some shells from a store, and then we went home.

Sleeping was tough. During the night, she got up even more than at home; not EVERY HOUR, but almost. So I was pretty tired driving home (you might say "exhausted," but yeah, once again - so what.)

Once again on the way home, lots of bathroom breaks, distractions, songs, and before you know it we were on our way home.

Two hours after we got home, she forgot that she was at the beach. That's life with dementia. But for a while, she had a good time. Was it frustrating at times? Of course. Was she confused at times? Of course. But so what else is new, that's the story of every day of her life. But for a few hours/days she had some sunshine on her face and the sound of the ocean. It is really tough, but I am grateful to God that I could do it. I hope you can too.

If not the ocean, hey find a nearby lake or river. It really isn't the beach per se. It is the idea of having some "normalcy" that you are still a "person," not just a patient.

BunnyL - the wheel chair is a problem of course. But if you can rent a wheelchair van, it is an awful lot easier. With my Dad, he lost both his legs, so I remember the challenges of travel with him (transfer board), getting him to roll down the window and use the door for leverage, making sure I always found wheelchair friendly restaurants, hotels, etc. But you can do it. I got my father from Pittsburgh to Detroit to see the SuperBowl in a wheelchair. Now that was a tough crowd in the snow in February. Warmer weather is a lot easier for wheelchair travel. But yes it is very tough as well.

Jeffrey - what a wonderful son you are - God bless you! You really inspired me to be more compassionate. You're right, they need to feel 'normal' again and sometimes I forget that. If I put myself in her shoes I become a better person! Thanks!

Every few months my mother talks about the 2 of us going on vacation. I call them awkward moments. I nod politely. My mother is in stage four of parkinsons. She has extremely limited mobility. And now dementia has set in. She has nighttime incontinence. I asked her where she wanted to go the last time she brought up vacation. She couldn't say where she wanted to go!! I can't even get her to sit out on our deck. Every one has tried to just go out on the deck for some fresh air. No there are bugs it's too hot windy you name it she balks. But if I your humble 24/7 caregiver want to get away for a weekend once a year the big pout comes like I'm doing her wrong and she tells me that she shouldn't have to pay homecare so I can go on vacation. And that drama will resume as soon as I tell mom that I'm calling homecare for a weekend so I can spend it with my boyfriend I haven't seen since October. So to the person who ask ed the question I say take care of you. My mother took lots of trips when she was the age I am now. Lots more than ill ever have due to categorizing. Carle diem!

Meant to write care giving not categorizing. D*mn auto correct.

Substitute a couple of days out during the day by a water site and then forget it. In describing his condition, everyone would have one miserable time. You don't have to do the wrong thing. I believe he only wants to talk about a good vacation because those are usually pleasant moments. Don't do what doesn't make sense to you.