Travel with my 92-year-old dad who has dementia. I really, REALLY don't want to do this.

Something we did for my dad to encourage family members to visit was to invite them to the facility where my dad was living and host a lunch or party for him. The facility had rooms that could be used where we could serve cake, punch, etc., or even do an entire meal, if desired. It brought family to visit dad and each other, but kept Dad in his environment. When he was ready to be wheeled back to his room, we took him back. Some of the visits were more enjoyed by him than others (as nearer the end, he had more pain due to cancer).

Consider having loved ones come to your dad, not you taking your dad to them. If your dad likes to look forward to special days, explain to him (after you can make arrangements) that on this Saturday (or whenever) so and so will be coming to celebrate time with him. My dad liked to look forward to special occasions, so telling him ahead of time was half of the fun for him. Granted, as his dementia increased this didn't always work, because he forgot by the day it was time, but for the times he remembered, he would seem excited and would talk about who all was coming to see him.

Your cousins haven't seen your father for years. I doubt if they have any idea what dementia is like, or how much physical work is involved in transporting him that distance, or what impact the journey and the disruption might have on him. So it wouldn't be fair to be annoyed with them for their little fantasy about Uncle's Exciting Spring Road Trip but not in a million years would I agree to it, either.

All visitors would be most welcome, of course.

And, perhaps, one of them could pop along to their grandparents' graves, lay some fresh flowers and send a picture.

Feeling like you don't have a choice... Look. You have been doing this job on your own for four years. There may be very good reasons for that which are nobody's fault and nobody is blaming anybody. But for the family to *add* to your workload - not to mention the strain on your father - is unreasonable and unrealistic. Let them down as gently as you can but do be clear about the realities.

The change of environment will only make his dementia worse and he probably won't even know the nieces and nephews. Make arrangements for them to come see him. At this stage of his life travel is out of the question and no one should expect otherwise.

Follow your instincts. My sister-in-law took her 90 year old mother with Alzheimer's on a plane overseas so "she" could see her brothers one last time. The thing is, she had no cognizance of who they were and it really was the daughter who wanted to do it for her mother. They had difficulty on the plane and in the hotel with a very confused 90 year old. My sister is one of the top geriatricians in the country and says that to take a patient with Alzheimer's on a trip like that borders on abuse. The caregiver knows it's not what should be done but seeks permission from others because they feel guilty. The answer lies in your question... you already know it's not in your father's best interest nor in yours. You are the main caregiver and the responsibility will ultimately fall upon you. My mom is 90 with some dementia. I tried to take her out of the NH on Father's Day and she was incontinent but refusing to get showered after I took her back to the NH to get cleaned up. She yelled at us so that she could control the situation and kicked us out. We went to the diner without her and while it hurt us, we knew that her anxiety took over and it was the best place for her - not outside. Our goal was to be able to take her out for a day, a goal that doesn't look like it will be realized because now she won't do rehab, or get out of the bed. It's sad for everyone. I feel for you... someone else wrote that your cousins should visit your dad ... that is the real answer ... if they want to see him they should visit him. One of the problems with dementia is executive function and decisionmaking. It varies depending upon what the circumstance is. Your dad does not know how he will react or the situation will unfold after a 6 hour car ride. Stay home. Get some help and please take care of yourself. You are being a great child taking your dad's interest and putting it first. My thoughts and prayers are with you as you go through this difficult time in your life...

Absolutely don’t take him! You are looking for trouble! Tell whoever wants to see him to come to him...not meet halfway. They come to him or it’s nothing. I stick to day time trips with my mother & even then she gets agitated in public when access a ride doesn’t show up on time. It will affect your driving & what happens if car breaks down or traffic or whatever...You only handle what you can & no more & he also needs a home health Aide wherever he goes too...to assist w bathroom as he probably incontinent..So no overnight or long driving trips w him. Hugs 🤗

I agree with MarySS. They lose the ability to appreciate. A close friend of the family put a shower in Moms bath. He was so proud how it turned out. (It was nicer than our shower) Mom had no idea he did it for her. So could not appreciate the work he put in it.

I never told Mom anything in advance. Actually, if she didn't ask where we were going, I didn't say anything till we got there. They have no perception of time. So telling them an hr, tomorrow, next week means nothing.

My advice is to do it. It sounds like you don't even want to be with him on Saturdays. This is a very tough thing and you have all the responsibility. But it may be the last chance to be with his nieces & nephews. It's about balance, your needs and his, but again, I feel you should do it. That is what love is about and taking care of your parents, is about too. I wish you the very best on this.

My advice is just DON'T do it. We did this a couple of years ago. A normal 5 hour drive was 8 hours do to multiple needed stops. We all ended up miserable. It was a disaster as far as I am concerned. We didn't get to really visit with the realitives. They visited with each other while I took care of her. We sat in the hotel room for a good part of it while others enjoyed a boat ride. I didn't bring enough clean clothes for the overnight stay, she wet her pants through the depends. She didn't understand who poeple were. We all came home exhausted. From now on, anyone who cares to see her will have to come here. She didn't remember a single second of it within 30 minutes, all we have is bad memories of the road trip.

FaceTime! Goggle chat!
Do regular online video calls so that he can see them and they can interact with Dad. It will make his day, and it will let them see just how challenging this is for you to care for him.
My daughters do weekly FaceTime with my mother so she sees her great-grand children. She reads them books, which they like. She is very hard of hearing and has mild dementia, so this works out better than direct interaction. She has a new great-granddaughter in another country so seeing her online weekly is the only way she can meet her and watch her grow. It's not the same as a hug but it works.

Any time you move an elderly person with dementia, it throws them into a tizzy and causes further damage to their minds. We see this in just taking them to the doctor, much less to an environment for days. My suggestion......do not do this to your father.

Have the nieces and nephews come to you and him. Explain to them what the situation is and that it's not only very difficult, but also very dangerous for him to undertake such a trip. If they can't find it within themselves to do that, then that's their choice. And don't feel any guilt.

this is simplistic but ... the road from your house to theirs also runs from theirs to yours.

So what I've realized with my mother, who is 76 and has dementia, is that oftentimes, she very much likes the idea of events/visits/etc. but then after we makes special arrangements for her to attend, she's totally overwhelmed and ends up miserable the entire time. For instance, this past summer my father's family decided to have a reunion out near us (we live in MD). My uncle arranged it after coming to visit my mom this past spring, soon after we had to place her in a dementia-care facility. He was thinking by having it near us, she could be included and it would be something for her to look forward to. Aunts, uncles, and cousins were generous enough to fly out from all over the country (AZ, FL, IN, MN). For the two weeks before, she lived in constant state of anxiety, worrying that she wasn't ready, didn't have the right clothes, had already missed it. As someone earlier mentioned, she did enjoy her one-on-one visits with the relatives over the time they were here, but the day of the actual reunion started out badly and just got worse, until she was almost inconsolable by the end. (We wanted my dad to take her back to her home, but he was resistant as he still wants her involved in everything we do.) It was so sweet of our family to take their time and money to do this, and luckily I think that everyone BUT MY MOM, enjoyed the experience. I'm learning that those with dementia lose the ability to appreciate the emotional significance of events once they are involved in them. Instead, it becomes a unfamiliar and scary situation that is fear and anxiety-provoking.

As a result of these kind of experiences the last few months, our family has even decided not to take my mother to see her own mother in Wisconsin (whose health is failing quickly) one more time, as it would be a huge financial, logistical and emotional investment for all of us with ultimately little to no emotional meaning to her (or my grandmother who also has a milder case of dementia).

And all of these situations have been with my 76 year old mother, who is in good physical health, other than her impaired cognitive state.

I would strongly affirm those who have said that anyone who loves your father, and wants HIM to have a good experience and visit, will take the time and effort to come to him, for his sake, not yours.

Use the money that it would cost you to travel there and use it to bring the family to you. They can much more easily travel to you than you can to them.
Travel with a person with dementia is difficult and if you have to stay in a hotel it is even more so. Persons with dementia NEED consistency and travel disrupts that. A night or more in a hotel may be pretty frightening, nothing is where it should be, the bed is not yours, the rest of the furniture is not yours and it is in the wrong place. And if there is the possibility that he could get up and wander there is no telling where he would go.
Bottom line a trip like this is not a good idea. If it were to move permanently and it would be necessary that is different but just for a visit not a good idea.

Those relatives don’t have a clue how your dad is; your dad doesn’t even have a clue how he is...but you do. Trust your gut instinct, it’s there for a reason. As much as we’d love to bow to their wishes we can’t always as it’s either not safe, impractical, yada yada! I agree that they can make the drive to see him...good grief! If they are so crazy about him, tell them he is unable to make a journey like this and give them a couple of choices of when to visit. These are well meaning folks who have no idea what dementia is like. My dad's SIL, and his nieces all drove the 5 hours to see him a few years ago and drove home the same day. I’m so glad they saw him before he became so frail from all his falls and surgeries. But would I take him there...no way! Dad even gets grumpy and disoriented coming to our home, so we don't even do that anymore. The fraility of your dad and bouts of diarrhea is reason enough. Grant his wish with them coming there. Stand your ground and listen to that inner voice

Why don't the younger, not frail relatives drive to see HIM??? Sad, but after bringing my 90+ yr old mom from Kansas to SW MO, I was about to commit harry-carry...the frequent bathroom stops, oops, accidents and clean-up, clothes changes, cleaning my own shoes (due to a sh!tstorm)...I felt so sorry for her. And me. It sounds ok in theory, but reality is not kind sometimes...

You do have choices. Say NO. They can come to him if they want to see him. Stand up for yourself and him. Good Luck.

You do have a choice. Say NO. Tell the neices and nephews their going to have to do the drive. They can car pool and switch out drivers. They are perfectly healthy and he is not. That is ridiculous they are willing to put you both through an huge stressful ordeal, and not think much about it. Im guessing they havent been around a person with dementia before? How many 92 year olds do you see on road trips? NONE. There is a reason for that. Because it is too hard for them.

That is way too much on a frail person!! Taking him for the night is not a good idea. What if he gets there, and freaks out because he doesnt know where he is. Doesnt remember how he got there. Doesnt remember the family after a few hours? Trips over a rug or carpet or steps. Cant get to the bathroom because he doesnt know where he is, or cant remember.
He could even freak out half way through the car ride. I have had that happen to me. It is extremely nerve wracking hearing someone scream at the top of their lungs, and hard to calm the person down. (The person thought we were lost). Something could happen to him just because of the stress of the drive and unfamiliar suroundings. What if he freaks out and tries to open the car door whilst driving? You could lock the door, but its still scary if he is trying to escape. Youll have to pull over to calm him down.

More importantly how will you take care of his bladder needs? There is no changing area along the highway. Are you going to take him in the womens or mens rest room? Both in a cramped stall trying to change him with coats in the way. Are you going to change him outdoors in the cold? Can he even walk that far to a busy rest room? Step up over any curbs to get to a rest area building? My dad had moderate dementia and wouldnt come out of a busy men's restroom for over an hour at a restaurant. My mom was in total denial he had dementia. He came out with his pants down. It was extremely stressful. The manager got involved. Dont do it. You have to handle this all by yourself. Just dont.

They need to get off their butts and do the drive. That is selfish to put a frail elderly person through that. And make you a nervous wreck in the process. Just tell them it is too much. Because it is.
They can all stay at a hotel nearby. He offered to pay. He can pay for a room. Its not too much to ask of them. They are healthy individuals. They have no idea what they are asking of you. I wouldnt do it.
That is still asking a lot for you to do half the drive, and then turn around and drive back.
If you still wantrd to do it, hire a car service so you can relax and take care of him. I still think it is a very bad idea.

why don't you use social media like facebook, create a group and let him talk to them over the telephone. I do this with my Mother and her grandchildren and she loves it. You can take a laptop and HDMI plug into the TV and have it bigger.

You will never be able to return the devotion given you by your parents. You repay it by giving the same care to your own children. You can’t wreck your own life to meet their every demand in their old age. If Dad has resources to pay for a companion to make this trip with you, then maybe consider it. Otherwise this is a nightmare in the making.

I don't have any encouraging words about taking your father on this kind of a trip. The one experience I had was very, very negative. How about the young, healthy nieces and nephews come to see him? How about someone giving you a break--with your father in his own home--so that you can get some true rest? There is no guarantee that, halfway through the trip, your father won't start blaming you for it and demand to go home. Also, with your father being this frail, a trip like this could start a downward spiral. Trust your gut: You know in your heart that this trip won't be good for your father or for you. You do have a choice. Be firm and tell them that your father is too sick and frail for this type of trip, and that they need to visit him. You are the caregiver, and you have a duty to take care of him by not going on this type of trip. Be prepared for some negative reactions from family members who are inconvenienced by your decision. I wish you a happy and peaceful New Year.

Hey Babs, have you decided what youre going to do? would it be fair to say that you may already know the answer to this and youre looking for reassurance. please dont take it the wrong way but even though you have a million reasons not to take him, i get why you would consider it, at least for me, i have conflict when logic and feelings get in the way and personally i would proably feel bad if i didnt take him, aside from all reasons not too and i would feel a little guilty or a lot if i didnt, if thats the case, its really easy to give the advise here especially when youre neutral party who has no ties to the person in question, its an entirely different story to deny someone you care about something they really want and even though you have all those reasons not to, its still denying someone you care about something they really care about, for me its just another sign that time is is getting us closer to the inevibable. if i am totally wrong, i apologize for taking up your time but if Im correct, i run into this type of thing a lot and what ive learned to do to mitigate the guilt or wahtever it is , is to compromise in some way that satisfies the person in some way. an example would be to have the releatives in question come to him like i said earlier and maybe take a phone with live recording prior and go out to the cemetary in question and get him a a live video feed. while its clearly not the same as being there, it is something, along with seeing his younger relatives. thinking outside of the box may surprise you. whatever you decide let me know, im always up for ideas i may need in the future. i hope i helped in some way

Yes, people who have never one caregiving know how hard it is to get people. They don't realize that the elderly can become like children wanting full attention. And what goes in to caring for them.

"My sister lives there and suggested that possibly her daughter could meet me half way and they could take him the rest of the way and manage him for an overnight stay to give me a break."

If no one has bothered to make the trip to see him, I don't see the above as being likely to happen. Or it might be the plan, and then the daughter will bail at the last minute, and YOU will be the one making the whole trip.

Why would you even consider this trip? Let the relatives come and visit him.
People came to see my mom, who she asked about and when they came she didn't know who they were. People with dementia usually don't know what they are talking about. They say one thing and the next minute they forget it. Leave him in place, too dangerous to be traveling anywhere.

I personally think that the younger people in the family who can travel more easily should be the ones to make the trip. And at his age one on one visits are probably more rewarding and easier for him as well. As his guardian you are within your right to say he can't handle the trip, he needs his routine and own surroundings to be comfortable. My mom is 88 and she lives an hour away. Even having her up for the holidays is uncomfortable for her. Large groups leave her confused and cranky. She is much happier even if not with family in her own home with her trusted and daily routine.

For all the reasons you stated, of course you dont want to do that. Would it be out of line to have them come to him. because that seems to be the obvious answer here. I would go with your feeling there about not doing it, but having said that, I would find a way to get them to come to your dad. this sounds terrible but how badly do you not want to do this? find a way to get them to come here. as a caregiver, you can move mountains, you know this already, just think it out.

The doctor at my mother's previous AL said of course we should fly my mother across the country for my daughters wedding. We booked a ticket and thankfully bought flight insurance because my mother bailed a few weeks before. This caused a rift with the marrying daughter at the time as she felt we didn't want to deal with her. Well we didn't. My mother has major mobility issues exacerbated by behaviors she adapted for years. My husband and I would have been dealing with her completely. It is very easy for others to have opinions about what you should do but only you can walk in your shoes. Sad as it may be I think this trip is not a good idea. And I am glad we no longer deal with that doctor as we have moved my mother to SC from NY. That trip which was a third of the distance of the wedding one wiped her out. You know the reality of the situation. I would stick to that plan. We all have things or trips we might like to make under ideal circumstances but often we don't or simply can't. Wishing you the best outcome with this situation.

Since he still lives alone, I would assume that his dementia isn't overwhelming and he obviously remembers things or he would not have asked to go.

We all have different situations we are dealing with and you would know best if he could handle being with people that are asking to see him. Would one of his children be available to be with him?

He obviously doesn't rely on you 24/7, I'm not minimizing your job, please don't take it that way, some have super needy parents and feel differently then I do, my dad has dementia but is pretty high functioning and remembers mainly what he wants to, the rest just never happened., but that is not new behavior.

I think if they can give you a respite it could be good for both of you. Their house or his, maybe one of his caregivers would be game to go.

A lengthy roadtrip with an elderly person is certainly tiring for him or her, but it is totally consumingly exhausting for the caregiver. Been there, done that. Where's the bathroom in relation to his sleeping quarters? Easily accessible for the Loved One's specific physical needs? Needs assistance getting up to go multiple times in the middle of the night? Shower/bathing assistance? Specific diet/meal/eating/medication routine? And leaving him for a week or two with people who have no experience caring for the elderly, let alone not knowing his specific capabilities, needs, and routines? Wow. Is one of them a nurse and/or experienced caregiver, or are they all self-absorbed, easily distracted social-media addicts? Is the LO comfortable with help from a non-regular caregiver? My dad trusts and relies on me for moral and emotional support as well as his physical needs, and the familiarity of my presence because of my knowledge of ALL of his needs is very comforting to him as his physical decline progresses. He's not just an "item" to be passed off onto anyone to allow me a break (as much as I would love/need a lengthy break). Anyway you look at it, traveling or leaving a needy/elderly LO takes much physical and mental and emotional preparation and anticipation for both the LO and caregiver. So much more we all know could be said about all of this.....

Please listen to cwillie. If they want to see him so badly let them come to visit him.
It’ll be way too much for your dad to travel. It’s just not good for him in so many ways.
The change in routine, arriving and staying in different surroundings, the stimulation - all this may be just too much for your father. You can’t predict how he’ll react & all the preparation in the world can go awry.
Your intentions are very good because you’re a loving , caring daughter but please don’t take him.
Have them visit to be on the safe side.
I took my mother to Nashville as I had a conference there & wanted her to see the Grand Ole Opry. It was a 1200 mile drive. She was about 79, no dementia but slowing down some. We stopped overnight in Blacksburg VA on the way there. By the time I got her in the hotel room, I realized my mother had developed a fever. She wasn’t ever a complainer but she was felt so hot & was acting sluggish. I was absolutely a complete nervous wreck. I got her in bed & was in a town I didn’t know and all I wanted was to get her some soup & fluids and let her rest. I will never forget that trip. I was so scared that something would happen to her and we were so far from home. Lucky for me she woke up ok, still sluggish but the fever had broke and we continued to Nashville where she rested for another 2 days in the room & was able to see the Grand Ole Opry after all.

Your dad has 15 years on her.
Not to scare you, but it could happen. Thank heaven it worked out for us.
Take the safe route and keep him home.