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

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

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I have been looking at some of the other articles on this. When we had dad over for Christmas yesterday (he lives on his own with the help of caregivers), he brought up the fact he would really like to go see his nieces and nephews this spring. The car trip would be a minimum of 4 hours on a good day, but potentially looking at 5-6 hours on a bad traffic day. He uses a walker and this would require multiple rest stops. He is very, very frail. I really, REALLY don't want to do this. Just spending every Saturday afternoon with him is exhausting to me. There's the med management situation plus the care of his legs (he's diabetic). He said he would pay for a place for us to stay but I don't want to share a hotel room with him and he would be very confused on his own. I just don't think he could do it. Possibly one of them would let us stay. His grown nieces and nephews are pushing him to get me to take him up there (I am the only one here in town with him - I've been managing his care for almost 4 years and was recently awarded guardianship). They have not seen him for many years and I'm afraid they don't realize how frail he has gotten. 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. I did read in one of the articles to talk to his doctors. I could run this by his geriatric psych and primary care doctor if you think that would be good. I am at a loss and maybe I'm worrying about this all too soon but I really don't want to do this but feeling like I don't have a choice.

Alzheimer's & Dementia Mobility Travel

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No no no. If nieces and nephews really want to see him I would suggest to them they put their own azzes in the car and come to him or make the arrangements to transport him there and back themselves (never gonna happen🙄)..... Their expectations are totally unrealistic for anyone his age let alone someone with dementia!

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I agree, if they want to see him, they should visit. Is he incontinent? This would be a big reason. Are you comfortable helping in the bathroom?

Tell relatives that Dad is not up to a trip that far even though he thinks he is. Don't tell them at first that you don't want to do it. You have you r guardianship. He has Dementia. A good reason not to take him. They don't do well with change.

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He is still continent but has bouts of diarrhea that come out of the blue. I do not help him with any of that.

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Then I would not take him. Change in food and water could cause problems. Tell the relatives this. Tell them you personally don't have to deal with this, thats why he has aides. Don't think they want to deal with an adult with this problem. I always told my brothers, I would never care for a man who wasn't my husband. So they get Dad.

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Don't want to be the bad guy? I don't blame you. Discuss this with his doc and most likely he will back up what YOU think is best.

Travel would be very difficult. Do not allow this to happen.

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I guess this is not necessarily a right answer for everyone, but thought I would share my opinion. My dad died of ALZ earlier this year, and in the year prior we did some shorter trips with him that meant a lot for him, but were hard on me.

Now that hes gone, I would not trade those experiences for the world. Not saying they were easy, especially when complicated by the presence of my more difficult mom, but so glad I did them.

Again, not being judgmental if you don't think you want to do it. Just another angle to think about. In fact, he was in an SNF this past Easter, and we had been thinking of getting him (professionally) transported home for the day and it would have been his last day in his home. We decided against it and think maybe that was the right decision, but also sometimes wish we would have done it

In that case we were thinking if that would be hard on him, being home for a day, then having to go back to SNF.

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My dad is 74, last year when he came out of SNF to AL he wanted to travel 1300 miles to visit his grandfathers grave and visit his cousins, I knew that he was as healthy as he would ever be. So my husband and I decided that we would give him this gift, OMG! Somebody should have shot me. I had it all planned, right down to every rest stop so he could walk around and not swell up because of his CHF. I had 10 days scheduled, just to be on the safe side and not keep him in the car to many hours, I make the trip in 2 days, gave it 3 for him. When we get up north he decides that he needs to act 3 years old, won't bath, won't brush his teeth, won't answer questions, ends up sick and 21 days later I got home. I will never be stuck in a vehicle with my dad as long as I live, nor will I be subjected to his tantrums at some one else's house.

So, if you do meet your cousins to pick him up, make them keep him for a week to really give you a break. Get some depends for him to wear while on holiday, that way any explosions will at least be contained. For 1 week before and for the entire trip give him vit c, probiotics and zinc.

If they can't stop encouraging him to visit then he should visit but for long enough that you get a true respite and they get to see your daily life. Maybe they will come stay at your house and you can go someplace while they catch up. Well meaning relatives are a challenge to be sure.

I hope you get a week or 2 vacation.

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"Somebody should have shot me!" I'm still laughing.... and reiterating to myself to never, never take my mom anywhere out of town.

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I tried walking Mom, (in wheelchair) to a department store within a short walking distance from NH. She seemed fine until she slipped out of her chair and although she was okay, her loud hollering scared everyone within earshot. It made me realize how unprepared I would be if anything serious would have happened to her. I can't imagine taking her anywhere.

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Sometimes when you take a dementia patient out of their realm they can quickly become more disoriented. What happens if you get there and he although not meaning to becomes disoriented and acts out in ways you would never expect? Then you have to deal with getting him back home again.

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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.

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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.....

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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.

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Really,. You don't know much about people with dementia...

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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.

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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.

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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.

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My husband and I were talking about this at Christmas. My dad is 30 minutes away. I go there every Saturday. We're in a routine. He knows what to expect every week. We run the same errands almost every week. Then the holidays come around and I bring him to my house for the day. He stresses about it for days ahead, always telling me that he might want to leave early or not be there at all, that he might get too tired. It is a major ordeal to just get him in the house. Unfamiliar territory, one step up to the front door. You'd think we were climbing a mountain. I told my husband on Christmas that it is such a major thing to get him over a few times a year, how would he ever manage a trip in the car all of those hours.

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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.

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One of the things he wants to do is visit the cemetery where his parents are buried. He has talked about that for a long time. While I would like to accommodate his wishes, I also know how frail emotionally he is. I'm really afraid that would send him over the top.

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"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.

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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.

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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

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Great idea re live feed from the Cemetary. That’s an easy and doable solution.

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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.

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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.

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Wow. Your first three sentences. Amen and amen. How many of us caregivers who are of sound mind (ha!) have had this conversation with our own children and have made out a will and medical directive and plans for our own care down the road? A definite priority on my 2019 to-do list.

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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.

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That’s a great idea.

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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.

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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.

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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

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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.

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I agree with you. With dementia it is very important to stay in a routine and in familiar surroundings. The relatives have to understand the logistics. I think get a note from the Dr if it would remive the "guilt".

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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.

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

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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.

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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.

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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.

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This is a very good answer. thank you for posting. It has helped me also.
Babs75.. you should not travel far with your Dad, I agree with everyone that is saying that.

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

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