Travel with Father who has Stage 6 Alz

Love&Light

I need your advice. My siblings and I are finally able to move my Father who has late stage Alzheimers from the east to the west coast. Sadly due to circumstances beyond our control (spouse), we were not able to do this until now. He has significantly declined since we moved him to MC about a year ago and needs help with walking, toileting and most daily activities. He is also confused and agitated to the point where he has become physically violent with the staff, although this has never been an issue with myself or siblings.

I am concerned about taking him on a direct 5+ hour business class flight given the above factors. In addition he has lost all valid forms of ID and that is not easy to procure from long distance. I guess we could rent a camper and drive in shifts across the country, but that also poses it's own set of challenges.

Has anyone tried an air ambulance? I'm sure that is prohibitively expensive, but perhaps there are services that cater to special situations like ours. (In my fantasy world there is a philanthropist who lends out her private jet when not in use to help people like us, lol!)

Thanks in advance for your advice and support. I am scared but also so hopeful knowing that we can have our Dad living close to us so that we can spend this last part of his life with him.

Rescue mom

Air ambulances cost thousands of dollars normally, and I’ve never heard of any “donates” although there could be some. You never know until you ask. What about some medical type ground transport? Like a long-distance non-emergency ambulance? Your presence still probably needed.

I thought the RV would be best but I don’t know your other issues/circumstances. And at least two of you would likely be needed, one to drive and one to watch him, especially given aggression. They often try to run away/escape  in strange surroundings, not to mention just plain getting lost in the blink of an eye.

Airlines are pretty strict now about IDs.  But yes, getting that together is complicated at best. If he did fly he’d still need somebody to accompany him. My own DH is normally easy but I will never ever for anything take him on a plane again without another companion to help.

The Alzheimer’s association has a 1-800 hotline number on their website, they may have some transport ideas or suggestions. Ask for a “care counselor” or “care consultant.” And the local Alzheimer’s Association offices in your area, or his area, may also know of local transport services.

 The Alzheimer’s Association has a 1-800 hotline number where you ask for a “care counselor,” they might have ideas. The local Alzheimer’s Association offices in your area, and/or his area, may also know of some long-distance transport services.

Quilting brings calm

Having brought my Mom from lower Alabama to Illinois 2 years ago, I have some  thoughts for you.  In my moms case, her doctors refused to believe she had a UTI.  Which meant her behaviors seemed like stage 6.  Similar to your dads.  We moved my parents so that they’d be back in our hometown because we thought she was going to skilled nursing care. My spouse and I ended up bringing just my mom on that trip due to dads drama. He showed up a few days later. 

The RV sounds like the solution since you don’t have ID for him. Plus do you really want to try to negotiate airports with him? Plus try to deal with him on the plane without getting kicked off? 

  We were stuck with a crew cab pickup. Initial plans were for a two vehicle caravan with open trailer, but we ended up with a fully loaded pickup with just a spot for her and the dog in the  back seat.  

An RV allows you a place for him to lay down and hopefully sleep or be amused by TV etc. and  allows for easier and safer  bathroom and meal processes.  You will need at least two  people to handle gas station, rest stops, restaurants, etc.  Someone needs to be with him even in a one person bathroom, even if there is no family restroom. You need changes of clothing for him. Someone needs to be with him then while it is your turn to  use the restroom.  Same if you have to go inside to pay for gas. Overnights in hotels or even in an RV mean you need to block the door so he doesn’t wander. 

Don’t expect to get a lot of rest.  It will be 24/7 stress. An RV allows you to drive without him being obsessed that you are lost, driving in circles, etc.  it’s not fun to hear your mom tell your spouse this for several hours straight. 

Coordinate with his doctor and get at least a short term dose of a sedative to keep him somewhat calm. 

I do think having him in your area is necessary. It’s just not going to be pleasant to get it accomplished 

Stellar Daughter-In-Law

We were in a similar situation though only had to move my FIL from Chicago to Philadelphia, not as far as what you are dealing with.  We paid an RV service and paid one of our private caregivers to make the ride with him.  It was a horrible experience.  The husband and wife RV team who run the business were supposed to be highly skilled in handling dementia - one an RN.  They treated him horribly, clearly had no clue how to deal with irrational thoughts and tips for avoiding aggressive behavior.   They also took the longest route possible, we have no idea why, adding an extra 8 hours on to the trip by going through West Virginia.  WTF? 

All that said, I can imagine if one of these companies actually did a good job, it could be the solution.  And although it sounds cruel, I would try to keep him deeply - though safely, drugged the entire trip.  I don't see anyway that taking him on a plane, first class or not, would work.

MN Chickadee

Airlines are really cracking down on behavior right now due to people freaking out over covid protocols. I would be very concerned about flying with him in the current climate. Many staff will not understand dementia. Plus the toileting factor would be very difficult on a plane. If you went this route I would do first class and have an extra person fly with you to help keep track of him, get food etc. I get that one really hard day might be preferable to 6 hard days on the road but it's very risky - once you get into the airport you're locked in and at the mercy of circumstances.  I might elect for a lay over instead of non-stop if it's really 5 hours in the air. With quality briefs you might be able to go half way without having to toilet him in the plane, and a lay over to use the bathroom and stretch might work. But of course then there is more risk of unexpected delays or issues. Whichever route you go with, you might want to consult his doctor about trying some meds to keep him calm for the trip. Just make sure to do this in advanced so you can try them out - you don't want to be experimenting during travel since some people react unexpectedly to drugs.

jfkoc

I suggest you stay on the ground where you will have more control and flexibility.

Love&Light

Thank you all for your insights on what would be best. This has been tremendously helpful and affirming with what our family needs to do next.

harshedbuzz

Love & Light-

The short answer is that an air ambulance- coast-to-coast would likely be well over $10,000; perhaps more than twice that.

If you are going to do the move, it should asap as there comes a time when moving a PWD is no longer really possible. You may already be at that point.

Two other caveats-

1. He will need ID to access medical care and for a placement in the new state. It may also be required if for some kinds of health insurance; you would absolutely need it for Medicaid in the new state.

2. As you describe him now, you may have difficulty getting him admitted to a new facility at the MC level. Most MCF require a person to be ambulatory on admission even if they allow them to "age in place". His aggression and confusion are likely to increase with a cross country move and may further limit your options. If his current facility is part of a chain, you may be able to side-step the evaluation if you can find a sister-facility near you. I would also research the local geripsych hospitals in your area in case he needs a stay there.

HB

JJAz

My sister and her husband moved my sister from Virginia to Idaho when she was at this state.  It was an ordeal and it took BOTH of them.  When they walked in the door (2 of them with a wheelchair), they looked like they had been run over by a bus.  Kudos to you, but find someone to help you if you can.

JJAz

Most MCF require a person to be ambulatory on admission even if they allow them to "age in place".

 

 This is completely dependent on a combination of state requirements and facility policies.  In our community, many facilities (including most of the best) accepted my late-stage husband and others in my AD support group.  The only facilities that said 'no,' were the very high-end, fancy facilities that only wanted to treat early stage, easy to manage patients. 

 Jamie

 Scottsdale, AZ

Joe C.

If you decide to go the commercial airline route I strongly suggest you reach out to the TSA Cares program which you can google for contact information. This program provides assistance navigating the security screen process. I believe that each airport has their own protocols for implementing the program but as an example in Boston they will assign a dedicated agent to escort you & your LO through security making sure you don’t get separate. I have found this a big help.

harshedbuzz

JJAz wrote:

Most MCF require a person to be ambulatory on admission even if they allow them to "age in place".

 

 This is completely dependent on a combination of state requirements and facility policies.  In our community, many facilities (including most of the best) accepted my late-stage husband and others in my AD support group.  The only facilities that said 'no,' were the very high-end, fancy facilities that only wanted to treat early stage, easy to manage patients. 

 Jamie

 Scottsdale, AZ

Good to know, Jamie.

State licensing probably plays into this. In my state (PA) it was the case at a dozen facilities I toured from the cherry-picking corporate places to the state-run veterans home to the religiously affiliated to the quirky place run my my hometown. 

We also found it to be the case in SC (my BIL's FIL), NJ (considered for my dad), MA and ME (my aunts). I would ask ahead of assuming just in case. 

HB