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Follow Along and Chime In as I try to relocate my LO from CA to CO

My LO has gone through hellish isolation during the pandemic and we are trying to move her here because at least she will have her POA relative and elderly sister and brother can see her. Her illness has really progressed, and I don't want her 1000 miles away when she is at her most vulnerable. Long-distance caregiving and management of someone's medical and financial affairs is so hard. Her current ASL demands 24 hr private caregivers, so money is going fast.

From recent behaviors I feel like airline is out.  Anyone ever brought a LO across several states in an RV? I will have to have alternate furniture and a hospital bed waiting for her here in her new memory care. We will have to move her out from previous care center that day and the movers will have to  move her out that same day, catch up and arrive later. 

Needless to say, this is massively expensive and will clean out most of her savings. She will be living off her monthly pension type payments and LTC monthly payment once she moves.

The Oregon Trail RV trip is complicated by her many meds and special pureed diet, sometimes melt downs. 

Pray for me and give me tips. This is the end of the line financially, and I only have so much time off work, can't afford  to retire, have other elderly folks and grandkids to take care of. 

Sometimes she is lucid and says she will come with us, other times she has a fantasy senior home she says she is going to by herself, (she doesn't absorb that she will no longer have private caregivers 24/7 in ASL) because our state "is too cold". (She doesn't go outside anyway) I  think I will have to disregard that and bring her anyway. She can't afford to stay where she is, ASL + 24 hr caregivers. 

Comments

  • May flowers
    May flowers Member Posts: 758
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    Prayers for you as you start this move. Have you looked into long distance medical transport instead of an RV or is that not financially feasible?
  • Good Intentions
    Good Intentions Member Posts: 20
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     Thank you,The Flying Angels were just going to accompany her on a commercial regular airline, for $30,000 with transfers from DIA to our smaller town. I feel like will still be unable to tolerate a public flight with shared toilet, waiting in line at two large airports and they will have to land the plane. 

  • Good Intentions
    Good Intentions Member Posts: 20
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    Good idea, will ask MD about Medical Transport at this point.  Thanks
  • Good Intentions
    Good Intentions Member Posts: 20
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    I just hope she will cooperate and come with us. I have her POA. 

    This move has to work out somehow. The money is almost gone and I can't get off work anymore.
  • May flowers
    May flowers Member Posts: 758
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    The suggestions here might help as well: https://www.alzconnected.org/discussion.aspx?g=posts&t=2147561349
  • zauberflote
    zauberflote Member Posts: 272
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    Good Intentions, man, that's a big trip. Definitely saying a prayer for safe travel and sanity!

    We moved my Mom in about stage 5, but no behaviors at all. The trip was actually a huge treat for her as we flew, which she lived and hardly ever did. Of course the balloon burst the second we got off the plane, but that's another story. And she didn't remember her joy at flying At All of course  

    Can you merely tell LO that you rented a fancy RV and want her to come with you on "the Oregon Trail vacation trip of a lifetime"? Is that something she can actually enjoy in the moment, or is it just going to be awful no matter what? I pray also for some good feelings for her!

  • mommyandme (m&m)
    mommyandme (m&m) Member Posts: 1,468
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    We moved my mom from AZ to CO a couple years ago after the nightmare of long distance caregiving along with the 24/7 caregivers.  I flew with mom and her cats while my bro finished up with the moving van we hired for her house.  We didn’t move her into a facility, obviously.  We actually waited until June 2020 cause March/April Covid worried me that she’d be more isolated here. Didn’t matter. She too didn’t want to move away. We tried to get her to agree for a couple of years then suddenly a switch was flipped and she was ok with it. She didn’t have worrisome behaviors to deal with, just physical limitations as far as the troubles with traveling.  She was later stage 5 then.  

    I’m wondering what part of CO you’re bringing her to? 

  • jmlarue
    jmlarue Member Posts: 511
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    You've aptly named yourself "Good Intentions." This is a gargantuan task and I sincerely wish you every break along the way.

    First off, agree with whatever fantasy makes you LO happy and compliant. If she thinks its just an RV vacation - fine. If she thinks she's going to a luxury senior home of her choosing - fine. Doesn't matter if the story changes from one minute to the next. Whatever keeps her calm is what you need to agree to in the moment. She'll never remember so you shouldn't care.

    Second, will you, alone, be transporting her in the RV? I surely hope not. When a PWD has a melt-down, it can come at you without warning and they are capable of doing the most outrageous things - like opening a door and trying to leave at 55 mph. They could suffer a delusion that they are being kidnapped and try to attack you - while you are driving a behemoth RV in traffic. The possibility for disaster is too great. I would strongly caution against making this trip without a third person responsible for keeping your LO under control.

    Third, the Oregon Trail route will take you through the mountainous region of northern CA and southwestern Oregon. Cell phone reception is often spotty in those mountains, so contact with emergency services can be non-existent. Although it will be a greater distance to travel, I would be looking for a route that is more likely to have cell reception and keep the interrupted service to a minimum. It would be far better to stick to the major I-5 freeway to Sacramento, I-80 east to at least to Salt Lake, and then look for a decent southern route to drop down in to Colorado. You could take I-70 (for example). Whatever it takes to avoid the vast stretches of mountains.

    Fourth, if this is your first time driving an RV (and especially if it is a rented RV), make absolutely sure that you know how to turn OFF the propane service and run the refrigerator on electric. The propane should never be on while on the road. Remove the knobs on the stove so you LO cannot accidentally turn it on.

    I'm sure there's more ideas from others, but these are just a few thoughts from someone who has experience with long-distance RV travel. Personally, I wouldn't dream of taking my DH with dementia on a long trip by myself. That would scare the devil out of me.

  • Good Intentions
    Good Intentions Member Posts: 20
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    We have come to the decision that the only way to move my LO is by medical transport plane.  Has any one had any experience with a reputable company? Thank you!
  • [Deleted User]
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  • Good Intentions
    Good Intentions Member Posts: 20
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    I have decided that long-distance air medical transport is the best choice for her. I called one company and they wanted a check for the entire $27,000 immediately or they would not schedule a flight. Does anyone have the name of a reputable medical air transport company?  She cannot fly commercial. Thank you so much.
  • Good Intentions
    Good Intentions Member Posts: 20
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    Thank you for your replies to my thread about moving my aunt long distance!
  • Good Intentions
    Good Intentions Member Posts: 20
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    Thank you for your replies to my thread about moving my aunt long-distance!
  • Good Intentions
    Good Intentions Member Posts: 20
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    Thank you for your considerate replies to my thread about moving my aunt long distance. It's great not to feel so alone in this.
  • Good Intentions
    Good Intentions Member Posts: 20
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    Update: I found a Medical Air Transport Service that a Nurse Practitioner said others had used. 

    I called them and they said I need to send them a check for entire $26,000 now to even get booked, or $28,000 by credit card.

    I was always taught that you don't pay an out-of-town business you are not familiar with the total amount before service is rendered. 

    What do you guys think? I don't like to be put over a deadline barrel, but here we are.
  • harshedbuzz
    harshedbuzz Member Posts: 4,479
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    It seems easy enough to make calls to other medical transport companies and verify whether this is true or not. A CELA, if you have one, might be able to comment of the area companies or whether this is standard practice.

    You could also ask them to email you the contract for the job ahead of time so you understand their policy on cancellations and such. I mean, what is your LO became ill and couldn't make the scheduled appointment? What is your LO passed or became too ill to travel? I would be inclined to use a card for the protection it offers. 

    HB
  • SusanB-dil
    SusanB-dil Member Posts: 1,149
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    agree that you might check other NEMT (Non-emergency medical transport) sites.

    I found this - don't know if it will help, but could check it out just for a frame of reference:  https://www.flyingangels.com/how-much-does-long-distance-medical-transport-cost/

  • Good Intentions
    Good Intentions Member Posts: 20
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    Thank everyone of you that replied so far. I felt like the Lone Ranger. This week is when we move. Mover, Air Medical Transport scheduled. Her current lease in the place that is charging her close to $30,000 (this includes their requirement for 24 hr private caregivers) is up end of Sept. Her new memory care senior living is so beautiful and on the ball and will be paid by her LTC insurance 100%. She still says she won’t go. Pray or good thoughts, please. I have a few days to pack her up and try to communicate with her in person. Will let you know this week. Will be a miracle or a disaster, LOL
  • Good Intentions
    Good Intentions Member Posts: 20
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    Colorado Springs! Pray for us, moving this week, I hope she will go.
  • MN Chickadee
    MN Chickadee Member Posts: 888
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    Good Intentions wrote:
    Colorado Springs! Pray for us, moving this week, I hope she will go.
    Choose your language carefully around the move and find a good therapeutic fib. I wouldn't give her much notice or talk about its cost and I wouldn't say it's permanent. Think about what buzz words will resonate with her.  A visit to you or the grandkids? Beautiful scenery? The holidays? 
    Good luck and let us know how it goes! 
  • mommyandme (m&m)
    mommyandme (m&m) Member Posts: 1,468
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    Oh my!  Sending positive thoughts your way! Hope your trip goes smoothly enough.
  • Good Intentions
    Good Intentions Member Posts: 20
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    UPDATE: 

    Thank you all for your support as I planned our "Oregon Trail" relocation for my loved one.

    I ran the numbers and looked at safety and finances and ultimately the Air Ambulance route was the best for her.

    I used AirCare1 and I can recommend this service. I chose them because I wanted a Lear jet that would get us to our destination without stops, and be safe.  

    Their quote was competitive for the market. They kept in constant communication and were helpful and flexible with method of payment.

    It is VERY expensive, but by the time we both took off from work, the price of RV rental, her frail condition, and the distance, it was the best choice for her.

    She could not have flown commercial, let her ID lapse and she was not healthy enough to do so.

    I flew with her along with medical flight nurses. Very competent pilots. 

    What a relief to get her here. Had a lovely reunion with her elderly siblings. 

    Everything more efficient, better medical care,

     and less stressful since she is no longer 1000 miles away. 

  • MN Chickadee
    MN Chickadee Member Posts: 888
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    Thank you for updating us so others can benefit from your experience. I'm so glad it went well and you have your LO close by now.
  • mommyandme (m&m)
    mommyandme (m&m) Member Posts: 1,468
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    I’m so glad to hear things went smoothly and you’re all settling in.  What a relief that that leg of your journey is done. Thanks for letting us know!
  • [Deleted User]
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  • CatsWithHandsAreTrouble
    CatsWithHandsAreTrouble Member Posts: 370
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    So glad things turned out well for you all! Thanks for the update

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more