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.
They likely have no concept of his current illness state and confusion.
It would not be 'safe' for him to make such an extended trip. Just because your father is asking to go does not mean that he SHOULD make such a trip. Elderly persons tend to overestimate their own abilities and see themselves as they "used" to be when they were in their middle-aged prime.
Make it fun. Schedule a weekend with 'uncle' for some point in the near future.
You're jumping through too many hoops and driving yourself crazy. Come up with the easiest way to get this done.
You might start a yearly family reunion if all goes well.
Definitely don't offer anything, but if he brings it up, what I find works well (may not always work for everyone or all the time, but worth a try) is reply with something like 'tomorrow' or 'next week' or 'soon', not today...
When I have done that, mom will say OK, and then it is forgotten. She does not live with me, so I would not get a questions like that all the time, only when I visit, but generally they have no sense of time and short-term memory loss will help them forget... for a bit... easier to defer than argue or try to explain anything...
UPDATE: As I was typing in this website, she called me back. No, she does not recommend a trip like that for him. She said it would be too much. He is not going to understand so I don't think I'll bring it up to him unless he asks again-sometimes he forgets. I also asked her about an official diagnosis for him as she's never really said. "Mixed dementia". A bit of this, a bit of that, I guess.
I hope this helps. Good luck.
Thank you for writing that visits exhaust you. I feel so guilty about that, mom lives with us so if I am not in sitting with her I get guilt. It is a difficult situation.
Have a picnic at a park... have everyone bring pot luck so your not stuck with the food stuffs and this way father gets out in the sun and the little ones can play on the equipment and then visit then play... the adults can visit not only with each other but with father and especially father gets out in the sunshine and he has gone for a "ride". Then you take him back to a familiar place and he hasn't spent 4 to 6 hours in a car you get to rest after a hectic day and everything is good
The important thing is once you start on a trip, you've got the same distance to return home. There isn't much you can do about going to see the cemetery, but my vote would be for the nieces and nephews to come see him.
On the other hand, if you'd like to make the trip, maybe you could get one of them to come and make the trip with you both and stay in the hotel room with him etc. Basically just tell them you're not doing this alone. Maybe you could rent an RV so that he would have his own "room" for the whole trip and a bathroom too. They have RVs that are handicap accessible.
I know the choices are tough and that people can try to guilt you into doing things you know are not a good fit for you. Stay strong and do what works for you.
Pre-arm yourself with delay excuses if/when he brings it up again .... like long awaited dr/specialist app't, car issues etc
Instead, take whatever money you would have spent on the trip and rent an Airbnb near your dad for the family to come see him.
tell them they must come to visit him. Let the pick the days.
Your response on 12/28 to Meisie1's comment says all I need to read, but I read all the responses from others as well. My gut instinct says no way. I took my mother on a trip to SC years ago, when she was still in good health and no dementia. That was it for me, never again! Now just taking her to local doctor or dentist visits is a chore. Why do I have to go? There's nothing wrong with me. I don't want to go. Where are we going? Do I have to go? The worst is for macular degeneration treatment (4x per year) because we go to the place she has always gone and it is now over an hour to get there (due to move to MC to be closer to where two of us live). The comments she makes are not so bad, but it is quite a trip! At this point I have asked one brother to take over that because she needs a walker and cannot get in/out of my cars easily. She outweighs me by a lot - if she falls on me, I'm done for!
Let those who want to see your dad get off their butts and come to visit. If your dad did not have dementia, perhaps. Medically frail would still be a concern. Certainly two people making a long trip is "easier" than all of them making the trip, but he is not healthy and the dementia will bring in more issues than you need. THEY are younger and presumably healthy. Let them make the trip. Leave your guilt and desire not to do this out of the discussion. Just say it would not be good for him to make this trip. They don't like that idea, too bad. As others have sad, if they have not seen him in years and/or have no experience with dementia, then they have no clue.
Although a grand party with everyone coming to visit at the same time might be nice, I think given what you have said and what other's have said about routines, etc, it might be best for them to visit at different times. All at once could be overwhelming. Just those short visits to your house gives you a preview of what you face. Too many visiting at once might be too much. Multiple visits with less people spread out over time would be easier to manage. To make a long trip like that, not sleeping in a familiar place (and you said no sharing room with him, which could be a huge disaster!), upsetting his usual routine, etc, it has all the ingredients for a mess.
As to his desire to visit the cemetery - is it local or located where the other relatives live? If not local, any chance of finding a local place and passing it off? If it is local, it might be okay - if he is still aware that they have passed, that is the biggest issue. Our mother started asking about seeing her mother last November, and more recently asked for her father too. They have both been long long gone (40 and more than 50 years ago)!!! We just make excuses for now, too late in the day, they are away on vacation, etc. It would not help to say they have passed on as in her mind now they are alive and she would not remember us telling her anyway, so we would have to do this over and over. Excuses and redirection/refocus are easier.
So, my feeling is this is a bad idea. Most of the responses seem to be the same. For those few who say it might be last chance, it is what he wants, etc., there's no way to know if your experience would be good or bad, but most likely it will NOT be pleasant. The only inkling is the trip to visit your place during the holidays, and that is only a short trip. He is not well and has a "routine". Stick to that. No, just no to this trip!
I had to take my mother over 1,000 miles to come stay with me after her previous situation got abusive and she ended up with a scary wound but refusing to tell a doctor or police officer what happened. She could not be allowed to take a plane because the last time she got lost at the airport and called people who were too far away to help her, crying, rather than work with the airline employee. She refused to be accompanied to and from flights. She missed her connection, then stayed at a sketchy hotel an hour from the airport as a big football game meant all the local hotels were full. I was a nervous wreck, so vowed the next trip would involve driving her.
She is not physically frail but it was hell. I got her a map at a gas station so she could "follow our route" and she spent four hours mumbling over the map and looking at all the confusing information, swearing and saying terrible things between quietly trying to fold the map for 20 minutes at a time. The constant stream of angry invectives made me a less safe driver. I had an earbud in the ear she couldn't see, so I could listen to an audio book and ignore the quieter ramblings.
Once the map wore out its welcome, I put an audio book on the car stereo, it was by one of her favorite authors. She could not keep up with the story but would listen to the words, and sometimes ask questions. That helped, A LOT. if she got distracted I could say "wow, XXX is such a great author" and she would agree and go back to listening. Then she decided audio books were terrible and how dare I play one. The rest of the car time was her raving and pouting and threatening to call people to tell them I was abusive, then forgetting what she was doing and sleeping.
We stopped at a couple tourist traps, and that made her angry and more confused. Only stopping at Nashville so she could buy cowboy boots was OK for her. It involved her angrily yelling that she needed photos of her in her new boots by a blooming magnolia tree, which was a huge ordeal because she doesn't like herself in photos because she looks old, but instead says no one can take good photos of her as the photographer is incompetent.
She then spent the next few hours in the hotel room sending her magnolia tree and boots pictures to everyone she knew over email and social media. This created an interesting problem, because it made her look like a capable participant in the road trip, and undermined the family's understanding of her decline. Follow up conversations with relatives were "it looked like you had a great time on the road trip, I don't see what you're complaining about." (This was before I worked with an appropriate therapist, and learned how to control the narrative and make sure everyone was on the same page regarding the reality of the situation.)
I had to stay with her in the hotel and at restaurants because she left drinks unattended, would strike up personal conversations with creepy strangers, and she she left her personal items like a trail wherever she went. While she had a bathroom break I sprinted to three different businesses to collect all the things she left, and got back before she could wander. I had to chase one guy off mom invited to come back to the hotel room.
She needed the television on VERY LOUD in hotel rooms. She had no sleep schedule and would not take sleep aids. If she could hear or see anything else she would obsess over it and then get totally woken up and want to wander.
Make someone else drive him. Eight hours is only one day of driving, leave very early and there's no traffic.
I would certainly speak with his doctors also to make sure they are for it or against it. explain to the doctors all of the care that goes into dad on a daily basis and your afraid if his safety zone is broken he could have problems.
I would tell your family that dad is in a frail health condition and that traveling is not good for him. You don't know the length of time dad has on this earth and hopefully they all could find the time to visit dad at his home making things a hell of a lot easier for all.
If they all truly want to see dad they'll have to find the time to come to him.
You can create some other wonderful memories with your aging Dad......a road trip is certainly not the only way to do it!! Just think of the possibility that he hurts himself or requires hospitalization while on this road trip! How guilty would you feel then? It's a no-win situation, methinks.
Best of luck!!!
Then I realized on another thread, I griped my mom who may or may not be on here way to dementia, but in any event has severe OCD wants me to accompany her on a winter vacation to Myrtle Beach like she and my dad did for twenty five years. (MDs are a little confused, as she asks the same question over and over but has done that for years because of her OCD. They have tried to run a test on her but she wont do it
So I wondered, what was the difference, why don't I follow my own advice based on my dad? Well for starters, while my dad had ALZ, he was so easy to deal with, other than the physical logistics and repeated questions. The care givers at facilities he had been at always commented how they had never seen an ALZ so mild mannered and easy going.
My mom, for whatever reason, OCD or dementia is terribly difficult. I get tired out after being with her for an hour she is so emotionally intense. (in her defense, I think my dads passing has magnified her psychological disposition and she is very very depressed, but refuses to seek treatment for it)
So to Babs, I should perhaps apologize for my earlier advice of considering how she might feel later if she did not make the trips. I am glad I did this for my dad, but just don't know if I can do it for my mom. Or maybe do it for my mom, suck it up, and feel good about it later. The problem is she NEVER stops asking for new favors. Not like I would do this and she would appreciate it. She would just ask for more. Or I have thought of saying, I will go with her, IF, she wears her hearing aids, IF she wears her safety pendent, IF she tries to learn how to use her cell phone and bring it with her, IF she stops buzzing all the time (drives me nuts, but maybe she just cannot stop) and IF IF IF , she seeks professional help for her emotional issues. (Problem then is if she follows through, I will have to go with her :) Oh, and START to get the house ready to sell. It is an absolute junk pit.
That said I have to agree whole heartedly that having them come to him would be the ideal but it may be that there is some significance to him that he go there too so I would feel that out a bit. I also agree, no matter what happens as far as a visit goes, starting some regular Face Time or other electronic face to face contact should happen asap. It might satisfy his need to see and visit with them, it will help them better understand his limitations, at least cognitively and if there is a visit either way it will certainly help enable the family expressing a desire to give you a break do just that. As his primary family caregiver you are and will be his security blanket but if others, your sister, her daughter are willing to take over as much of the work as they can, for goodness sake take them up on it! Having face to face contact with them for a while even electronically can only help him be more comfortable with that.
We (the brother who lives closest to Mom and I) took mom, also diabetic and with heart issues...lot's of important meds and timing for them...across country to see our other brother and his family. The plan was to combine an event with a long term visit to give my brother and I a break, they have an in-law set up ready made. We flew her from CT to CA and I stayed in CA as well as her security blanket until she was ready for me to leave, tried to just be in the background letting my brother and sister-in-law take over. The travel wasn't as difficult as we expected it just took a little thought and planning. We traveled with 2 weeks of medication portioned out in her dispensers (so familiar to her). We put her in a wheelchair for airports and my brother in CA brought her home easily enough too (both brothers are pilots so fly on passes making this easier). I live about a 5 hr drive from Mom & bro another 30 min from her, they just drove up to us Christmas day, spent the night and drove home the next day, Mom is still raving about what a special visit it was. She does get anxious about any plans, visit's, appointment's & change in general so we tend to wait to tell her about things and while she knew about this trip well in advance and I'm sure stressed some it didn't seem quite a bad as usual and when plans needed to change she didn't take the out we expected of making the trip at all which is why the day was pushed back, I guess is was something important to her, she wanted to do.
A couple ideas, is there any option for one of his regular caregivers to make the trip with you? Plan the trip to be a long weekend, you stay in that hotel room, he stays with family after you settle him in that way you are close enough if needed and rather than seeing everyone at once maybe the family there could stagger their visit time with him, going to him perhaps at his home base there, this way he won't be overwhelmed by too may people at once and can enjoy his time with each of them. It will also keep him busy and engaged while there of course. This is all if he is insistent about going to them rather than having them come to him of course. It seems to me that his wishes are what is of importance here not their willingness or lack of to travel. But your needs and support are also of prime importance so anything that can facilitate both, if possible is what I would advocate for. It sure sounds like your family while not able to grasp the day to day wants to help and want's to appreciate it.