Very elderly advanced dementia person on plane journey?

[whileaway]

Hi, whileaway, and hope you are able to get the information you need.

To save the OP the bother of re-typing the back story, here's a link to their other thread: https://forum.alzheimers.org.uk/sho...r-my-mum-needs-rest-but-remains-on-24-7-watch

I know it's complicated and hard to know what the best thing to do is.

I do have to say that before you put your dad on a plane and head to the States for either a temporary or permanent stay, you do want to carefully compare the support, funding, and care he is entitled to receive in the UK, versus what will happen in the States.

It's complicated, of course, but in addition to all the usual things to consider, the short answer is that in the States, he will likely be responsible for paying for most of, if not all, his medical care--depending on if he is eligible for Medicare in the States, and I don't know how that works with someone coming from another country, and imagine it depends, and is complicated.

Even with US Medicare coverage, that will only pay for some things. He will also need a secondary insurance company, to pay for some of what Medicare doesn't. You will need to find a company and contract with them directly. I suggest you have a look on the AARP website and see if they have recommendations, or talk to your (US) local Senior Council/Area Agency on Aging/Senior Services office (this may be at the county, city, or state level, depending on where you live.)

You should also know that outside of some very limited types of nursing care, Medicare is not going to pay for carers to come to the house, or for an assisted living/dementia care facility. Again, it's too complicated to get into here, but generally, they won't pay. (Hospital stays are another matter, as are some types of rehab facilities after a hospital stay. Those tend to be covered by Medicare, at least in part and for some duration of time.) It is possible that private secondary insurance would pay for some of those services, although that's not the case for my mother, nor for anyone else I know with a PWD (person with dementia).

Also, if he receives any sort of pension in the UK, I don't know how that would be affected by a move to the States. Certainly any type of Carers or Assistance Allowance would no longer be paid if your parents aren't in the UK, and I would think that the council tax reduction would also stop, but I leave that to the UK experts to advise you on, or you might call Age UK or the UK Alzheimer's Society and talk to them.

The US Alzheimer's Society might be worth a phone call, to see if they can offer any guidance in moving a PWD from another country to the States. Their helpline is 24/7, although you may need an expert during business hours. 1-800-272-3900.

Don't forget that you will need to find your father new doctors in the States. At a minimum I would think that would be a GP/primary care doctor, and a neurologist. Some of the neurologists who specialise in dementia, or the practices that do, have long waiting lists (at least in my area). That's something that your local chapter of the Alzheimer's Association (Google or call the national office) might be able to help you locate.

He will need enough of any of his prescriptions to last until you can establish care with a new doctor. I hope you'll have an appointment set up for right after he gets to the States, so there won't be any lapse in care, although you'll have to arrange insurance first, or be willing to pay all bills out of pocket, which can be expensive (especially, God forbid, if he should need a hospital stay, ambulance transport, or paramedic call).

You will need to get his medical records from the UK, which you will want to do in the UK, and make sure you have physical and/or digital copies of all MRIs, CT scans, et cetera.

Then there are all the usual concerns with sorting through belongings, packing, and having items shipped. That in itself, is a big job!

If there is property, I imagine that would need to be dealt with as well. Will someone need to return to the UK to deal with any clearing out, or sales, that don't happen before this move?

Of course there is the consideration of citizenship, passports and travel documents being in order, any necessary visas applied for and received, and whatever else is needed for Immigration upon reaching the States.

I have no idea of the tax implications of such a move, but would advise you to consult your lawyer/attorney, financial planner, and/or accountant about that.

I have no idea how you transfer bank accounts; again, maybe your legal/financial professionals can help with that, as well as some general financial advice about how your dad will access his money and so forth.

I would also take into consideration your parents' finances as a whole. That is, if they have joint property, savings, and/or other assets in the UK, how will that translate to the US? What will the financial impact be, for both of them, of such a move and possibly transferring their assets?

Your dad will also need a durable Power of Attorney that is valid in the US, as well as whatever the applicable state's version of a health care PoA/living will is. The medical versions will need to be registered with the doctors he sees in the States, and the general PoA will be wanted by any banks, creditors, and other companies with which you do business on his behalf.

I would arrange a meeting with a reputable elder law attorney in the States, ASAP upon arrival. You may be able to get recommendations from your local Bar Association, or the local Senior Services agency in your area.

I think there may be some other threads here on TP about flying or traveling with a PWD, and it might be worth having a look.

Regarding the potential journey itself, while I have never done this, I imagine it's a bit more complicated than just booking some first class airline tickets and setting off for the airport.

I don't know what the airlines may require, but I would definitely talk to your dad's doctor and make sure he is currently okay to fly. If not, and even if he is, I might consider transport by water rather than air.

Then there is the matter of travel insurance, and making sure he has medical insurance coverage before, during, and after the journey.

If you do fly, you will need at least one person with him, and two might be preferable, as he likely should not be left unattended at any point in the journey. The unfamiliar surrounding and bustle of the airport are likely to be confusing and disorienting, if not frightening, to him.

I would book assistance through the airlines for all parts of the journey. Will it just be one flight, or will there be a connection? Have a plan in case the connection is missed or cancelled. (I would not want to be stranded in an airport for hours with a PWD.)

Have a plan for dealing with toileting, changing pullups and clothes, and so forth. Those airplane bathrooms are tiny. You cannot leave him in his own urine or feces/wet or soiled pullups for any length of time; not only will that be offensive to people around him, but it is very bad for his skin. You don't want to deal with skin breakdown or pressure sores; trust me.

Make sure he doesn't get dehydrated on the flight as that will only add to confusion. Make arrangements to bring any needed medications, and food if you think he won't eat what is supplied on the flight, or if that won't be sufficient.

And then there are the issues of where he will live, when he gets to the States. Will he go into residential care, or live with you, or be in a house somewhere? Will the layout of the dwelling be suitable and safe? Is a wet room, hoist, hospital bed, special mattress, or other equipment needed, and will those be ready when he arrives? What about doctors and medical care, as noted above? A dentist, eye doctor, specialists?

I don't think for a minute that this is comprehensive, as I am sure there are a hundred things I've not considered.

I don't mean to say that this is impossible, just that it needs careful thought, consideration, planning, and time to accomplish safely, plus a lot of family conferences and conversations.

To be frank, it doesn't matter if your father is "enthused" about the idea or not. Something that I find difficult about dementia, is that it is not about what your father (or my mother, or any of our family/friends/carees) wants, or says he wants, but rather about what he needs, and keeping him safe and his needs met. It's a really cruel part of dealing with this horrible disease.

I wish you and your family the best of luck, and hope you are able to find a way to meet your parents' needs. Very best wishes to you.

I am printing your post for my mother. We both were impressed with your level of detail and your clear injunctions. I have done some of these things, but you put it all so calmly and so rationally that it soothes her and me both. We are still panicking.

 

[Bod]

Contact the airlines, find out what their criteria is in this case.

Bod

I fear the airlines will have the final say.
It might not be what you want to hear.
You must find this out before buying tickets.

Bod

 

[arielsmelody]

I've never used this service, but looking around online I found this
http://www.airambulanceworldwide.com

I wonder if one of the non-emergency medical escort options might be worth looking into?

 

[WinnieP]

Plane jpurneys

My partner is 83, has had vascular dementia since 2012, and is not yet at a very advanced stage. He struggles walking and wears incontinence pull up pants. We recently returned from a trip to New Zealand where we visit regularly and we travelled business class. If I say it was a nightmare, that is a real understatement. The airline staff were brilliant but I was crying for a lot of the 2nd leg of the journey. His anxiety made him seize up and it took 3 of us to get him to and from the toilet even though we were the nearest seats. He got through 5 changes of track suit trousers, and did not sleep at all in spite of taking a sleeping tablet. Fortunately we had stopped in Singapore airport after the 1st part of the journey and rented a transit hotel for 10 hours and he slept then.
The worst part was that he completely stripped off twice. The staff rigged up a temporary curtain to save embarrassment to everyone.
He had deteriorated quite quickly in the last couple of weeks we were there, so there is no predictability.
My advice would be not to travel long distance!

 

[Lawson58]

My partner is 83, has had vascular dementia since 2012, and is not yet at a very advanced stage. He struggles walking and wears incontinence pull up pants. We recently returned from a trip to New Zealand where we visit regularly and we travelled business class. If I say it was a nightmare, that is a real understatement. The airline staff were brilliant but I was crying for a lot of the 2nd leg of the journey. His anxiety made him seize up and it took 3 of us to get him to and from the toilet even though we were the nearest seats. He got through 5 changes of track suit trousers, and did not sleep at all in spite of taking a sleeping tablet. Fortunately we had stopped in Singapore airport after the 1st part of the journey and rented a transit hotel for 10 hours and he slept then.
The worst part was that he completely stripped off twice. The staff rigged up a temporary curtain to save embarrassment to everyone.
He had deteriorated quite quickly in the last couple of weeks we were there, so there is no predictability.
My advice would be not to travel long distance!

My OH is mobile and continent and has siblings living in the UK. I know he would love to see them but he can't stand the thought of the long haul flight back to England. He is a well travelled man and hasn't forgotten how exhausting hours of flying can be. The last time he did the trip was pre diagnosis and jet lag really messed him around.

 

[Lawson58]

No, I overstayed a number of months for each of the last 2 or perhaps 3 years. I would always plan to get back after two or three months, but my mother would beg me to stay, and I had to-.

It's a few years ago so the rules might have changed since then but when my last visa was close to expiring, I applied for 'indefinite leave' to remain in UK. I had good reasons for remaining in England at the time and had no trouble getting it granted.

That might solve some your problems about overstaying in UK. I think that relocating your parents after so long in UK is a disaster waiting to happen and no matter what people say to you on TP, you seem to find all sorts of reasons why they should move and you persist in all developing all sorts of manoeuvres to get them on the plane.

Sorry if I sound harsh but you seem hell-bent on turning their whole lives upside down and inside out without considering what is really in their best interests and their needs, not what you would like.

 

[whileaway]

I just want to point out that Lawson58 is not the poster contemplating this.

Oh I didn't understand how to keep the posts together. Sorry. It was a chaotic time, and I would spend minutes at breaks