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My loved one has dementia and I am moving them across the country, it is a non-stop 32 hour trip. There are 3 people on board, one who is a CNA to help with the needs of the patient. This will be on a hospital bed that adjusts. I was planning on doing the ride also but now think that I need to be at the final destination when they arrive since it will be a new place and I will need to spend a lot of time there the first day to help with the adjustment. I'm not sure how mentally and physically I will be there if I have to accompany my loved one but want to make it easy for them too. I'm sure there will be no resting for me and I have some health issues too that I need to take into consideration. What do you all think? Has anyone made a move like this? Thanks.

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better to have the CNA and dementia person hop jet blue Non stop flight and meet up with the rest of you . it is really hard for a Person with dementia to travel long distance .
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ElaineX Dec 2023
I thought about that, hiring an aide to help me with her. This would require getting her up in her wheelchair and then transported to the airport which is over an hour away. Getting there the recommended 2 hours prior, possibility of flight delays. Us transferring her to a seat. Most of the time she's dead weight so not sure how easy that is to do. It's a 4 hour flight after that and then of course landing, waiting for luggage and then arranging another wheelchair transport vehicle to get her to the home which is about an hour away. She would have to be sitting for all those hours and then what happens with the bathroom issues? She's totally incontinent. I thought about a train as well with a sleeper car but that's a 42 hour ride. Plus her ID has expired although I think I have her birth certificate I could use, not sure. I'm more worried with her sitting on her bottom for 12 or so hours if we flew.
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Everyone is "supposed" to visit their loved ones in Memory Care, but the stark reality is, nobody ever DOES. It sounds like you're putting yourself and her through this grueling trip on a "promise" of folks visiting her when she'll likely forget they did, if they do, 5 minutes later! Do you realize that? Elders with dementia insist they're "alone like dawgs" all the time even when a parade of visitors are there every day! My mother would tell me daily how nobody EVER called her or went to see her when I myself called daily and saw her weekly. When I looked at her phone, there were 20 unlistened to voicemails on there! She complained of "loneliness " daily while in the activity room with 15 other residents doing crafts, eating and chatting!

If you are the one who's planning to be The Visitor, realize she may not even want you there or you may become a trigger for her anger when she sees you, as MANY of us have learned the hard way. Maybe not, but you just don't know. If you are doing this for YOUR sake, for YOUR peace of mind, that's one thing. But for moms "mental health" which is already shot, to go from an AL to a home with residents is already isolating, is another. To then add on a 32 hour non stop trip with a CNA attending to her.....I hope you realize a CNA cannot even administer medication nor would she be trained to intervene in an emergency, like an EMT would. Mom would have to go to the ER in the event medical help was required. Is the CNA trained to change the brief of a demented elder who's lying down in a moving vehicle???

Anyway, make sure this CNA knows what she's doing and that mom has some calming meds in her before they leave.

Best of luck to you.
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ElaineX Dec 2023
Thank you. My sister is the only one in the area and she admittedly said she does not visit. Maybe, maybe once a month. No one calls, mom doesn't remember how use a phone. I Facetime 3x a week when the aide is there. The facility she's at now, depending on the staff, will either get her up and dressed for the day or they will leave her in her room and bring food to her. This is a place that has activities, etc. This started about a month ago because some say she's too difficult to assist into her wheelchair when others have no problems. I know for a fact she was in her room alone for 5 days straight. Hospice even told us she will decline quickly if they continue to do that. I realize this move will be a huge setback but the one constant she will have is me visiting. She's responsive to me when we talk on the phone and says she misses me. There are companies that offer this service so I would think they have it figured out. This is from their website if you want to check it out: https://trans-medcare.com/our-services/
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This plan has disaster written all over it for all involved. How is a CNA supposed to deal with the patient's inevitable elimination needs? Is no one going to eat and take bathroom breaks? Is the driver supposed to stay awake for 32 hours straight? Regardless of whether you're on the bus or not, this idea is absurd.
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ElaineX Dec 2023
There's more than just a CNA. Here you go: All trips include:   
•  (2) Drivers, both will be CPR and Defensive Driving Certified
• (1) Medical Professional (CNA/LPN/RN/MA)
•  All Meals and Snacks for Patient and Passengers Included!
• Onboard entertainment via Smart TV with Streaming Service
• Free Onboard WiFi for Patient and Passengers
• Most Pets allowed (Please let us know what type of pet to confirm) 

They handling the toileting, changing of briefs. They stop for fuel and food but with three people, one with the patient, they are able to drive straight through taking turns sleeping.
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No way would I do it. Even taking my loved ones out in a car when they were semi-ambulatory was a nightmare.

There was always a CNN (paid home caregiver), at least one other relative and me. We were all spry and healthy. By the time I'd get LO home, I'd want to tear my hair out (LO being difficult), take a month-long nap (me being exhausted) and take a permanent vacation from LO.

You're moving your LO to a new place on the other side of the continent because you don't want LO to have mental health problems. What about the mental health problems that will be caused by taking this person away from the environment they know and for which they presumably have coping skills? On a 32-hour trip with people they don't know (I'm guessing)? On a bed that could slide if they're not careful? On the awful springs of such a vehicle, which are nothing like a car's suspension system? When does the driver sleep? What about wintry roads and delays? What about LO adjusting to a new place they've never seen before? What about LO missing the things and people who are familiar? All while dying?

You've got the basis for a sequel or prequel to the William Faulkner novel, As I Lay Dying. Good luck.
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ElaineX Dec 2023
So people can get a better idea, here is one company. https://trans-medcare.com/our-services/
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I’ve done this, although we stopped at night. Last trip, 4 days.

A hospital bed means that the trip probably needs to be in a truck. The bed would need to be secured very very carefully. There should be room beside the bed for someone to lie down on a camping mattress on the truck tray. With 3 or 4 people, you would need room for more than one extra sleeping place.

A 32 hour trip means overnight travel with at least 2 drivers on 12 hour shifts. Here long distance truckies are strictly limited to 12 hours driving maximum in each 24 hours. The second driver can sleep in the padded ‘truckie-bed’ in the truck cabin, up behind the driver. Truckies risk their licence if they cheat.

What you may not realise is that the vehicle (and the bed) will bounce a lot, even on bitumen roads. In a loaded truck, you find out that the road is much less smooth than it seems in a car. I think it depends on the quality of the ‘fill’ beneath the top surface. This varies from place to place, as it is usually excavated fairly close to the highway. I did a day or so in the truckie bed in the cabin once when my back was crook, and the bouncing meant that it was nothing like as comfortable as my normal lie-down flat on a concrete floor.

Other things to think about:
- Getting up into a truck isn’t so easy, unless you are young, fit and/or in practice. Check out early whether the people who are going on the trip can do it easily. We take a step ladder for me.
- What are the plans if something goes wrong. An extra night on the road? A medical emergency? A death in some state where you are out of your depth?

I would think very very carefully about this plan. I’d only go ahead if the people organising it have solid prior experience of doing the same thing. Don’t take the word of people who have done something a bit similar and think that this will be the same.

Yours, Margaret
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ElaineX Dec 2023
This is one company and the vehicles they use, they're passenger vans, not trucks: https://trans-medcare.com/our-services/ I've thought about a medical emergency but my loved one has a DNR in place so no life saving measures would be taken. Trust me, my head has been all over the place with this and the right thing to do. I appreciate your input.
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Transporting someone ill enough to need to have this done by hospital bed would be of concern to me. Were I trained to handle emergencies I would want to be present on this journey. Truth is I would never attempt such a journey and I am a nurse. It's too long. Too many things can go wrong. Were the person DNR and on Hospice I might consider such a move; not otherwise.
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ElaineX Dec 2023
They transport on a stretcher I guess but more comfortable so the person is not sitting up but the bed can be adjusted. My loved one is on hospice, has been since a fall over a year ago which left them non-ambulatory. They put them on hospice because the assisted living facility said they needed more care. There is also a DNR in place. Where they are at now my family member who was supposed to be visiting is not and my loved on is alone a lot which is not good for mental health. I really don't know what else to do.
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I don’t have any personal experience with transporting a family member on a long journey such as this.

Trips with parents can be exhausting. You made the correct decision not to join your family member on the trip.

Several people on the forum have moved their family members closer to where they live. Stick around for feedback.

Are they moving in with you or into a facility?
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ElaineX Dec 2023
Moving into a small group home with 5 other people. I would fly out and spend 3 days getting everything taken care of and either A take the ride or B give them a hug and be refreshed on the other in preparation of a long day(s) ahead.
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