I’m taking my mom out of rehab and heading back to Australia from the U.S. We will be reliant on a private care there. What am I in for?

Kate, big sympathies & (((hugs))).

If the worse does happen, it will not be for your lack of care, love, or thought out plans. You really have tried to move the world but there are just so many factors outside your control.

Here's another out there suggestion..
Before you leave, could you employ some kind of agency for a companion, about your age? As your 'surragate' to sit & visit Mum. Someone to hold the phone up & liaise video calls for you?

I met a family once when the Mother was very ill/dying & the DIL basically was the girl on the spot. The daughter being in Sth Africa or somewhere, unsure if able to get there in time.

I hope things improve. You sound so capable & problem solving. I think you will find a way to make things a good as it can be.

Kate, you have my sincere sympathy in this. Here’s a left field suggestion that might even work better if mother is badly ill. There are many Aussies in the states, particularly on the east or west coast. West coast, it’s often musicians wanting to ‘turn music into gold’, while their girl friends find something to fill in time. Perhaps you could hire one as companion for your mother (plus the option of a friend who shares the right accent). Then you could find a picture book or calendar of Australian scenes, cut them up and stick them up where she can see them. Then say it’s really (or like) Australia. Or just use them to start conversations about Oz. If you could find a nice friendly young Aussie (might even be a nurse herself), she could be really good for your mother while you have to be away - especially if she comes from the area where you live.

You’ll find it easier to check out care options in Australia when you get here, but remember that some is federal but much of it varies from state to state. It’s easy to get confused.

Love to your whole family, Margaret

Thank you everyone for your amazing responses!! 💓💓💓

My mom is back in the hospital unfortunately, went in here days ago. She had shortness of breath for many days though her oxygen was good. The rehab had already scheduled a blood transfusion Tuesday, but she clearly couldn’t wait. She now has crackles on the lungs and we are waiting for an X-ray result.

I had already had a total rethink of this crazy plan and have not told her yet but cancelled her flight which was for today but rescheduled mine to go Saturday if possible. It will of course depend on how it goes in the hospital this week. I will plan to come back in a few weeks. I had planned on telling her the hope is she will have more time to rehabilitate, gain strength, get more medical care, and for me to investigate the private nursing homes in Australia and sort out her visa which has still not come through.

The other dealbreaker for me was the hospital tested her for MRSA and she was positive- not infected but carries it. My father in law died from this super infectious superbug. My husband has a congenital heart disease and the day after I flew out to come to my mom he was found to have a huge blood clot in his heart so is now being referred to a transplant team.

We can not live with the risk of MRSA and now I am so worried I am bringing it back with me (after spending all my time in the hospital and rehabs). The first horrible rehab my mom’s roommate told me my mom’s predecessor died from MRSA and the roommate herself was also infected but beat it.

To answer some of your questions:
* I bought a very expensive portable oxygen unit with many many batteries that were to last well over 36 hours for the journey home which is 23 hrs door to door.
* We had first class tickets booked
* Her primary physician signed the paperwork for the airline and discussed and approved the plan with me
* We do have significant funds and can afford the private healthcare, in home care, have insurance in Australia for her but it does not cover pre-existing for one year though does cover palliative care after just two months- including for preexisting
* She was accepted into hospice here in California, meaning the hospice doctor signed off on her meeting the criteria and that she was thought to have six months or less to live.
* The mission to bring her to Australia was her dying wish on the back of a three year plan but covid with a two year border closure in Oz delayed it
* She has no one to care for her where she lives. She has one friend who has told me she can visit her and help look after her a little in the rehab, but works full time
* I have been trained by the rehab team on doing transfers, toileting, shifting her in bed, etc. But I still feel totally unqualified and am clearly NOT a nurse.
* The further research I found is that there are some private nursing homes (most are government subsidised and she would not qualify, same with most in home services). But I still can’t figure out actual costs including care, nursing, etc. I found private in home care for $40-60 US/hr but it is patchy at best with different carers. The reality is I would be doing the bulk of it.

So now I have the horrible job of breaking my mom’s heart and trying to soften the blow with giving her hope that we still may be able to pull this off. Everyone keeps telling me to give her the hope. It never sat right with me at the beginning, in case it was setting her up for a huge disappointment. But she was on death’s door and desperate times call for desperate measures.

I am not sure now how close to the door of death she is. The X-ray today may tell us something. Her case is so complex and there is not one good doctor who has met me and advised me about her prognosis. They still don’t even fully understand all the problems she has. She never saw the vascular doctor and has vascular insufficiency. No cardiologist though she has heart failure. She has an appt with a rheumatologist in July.

KateAlt (if you're still reading), about the money.

I have been assuming it's no object. I mean, it's going to be crazy crazy money, but you must already have found that out?

Only it also struck me: if you and mother and family do have the resources and are willing to spend them, it's not for anyone else to comment on whether it's worth the money to undertake this - huge! - mission. Good luck to you and may you have a tailwind.

On the other hand. If you aren't that kind of family, and you haven't actually added up, and you're thinking you'll just find the money somehow... Then it really is time for a reality check. For heaven's sake don't do anything plain silly, like mortgaging your house or borrowing elsewhere, will you.

Kate, you have had a lot of responses, but not been back to answer any questions or to fill us in further about things we might be missing. I sure do hope to hear from you if your thinking is altering at all about these plans, and if you may consider some alternative to it, some other options? Hope you come in to the thread today to talk to us. Think about you and your Mom.

https://www.health.gov.au/health-topics/palliative-care/about-palliative-care/what-does-palliative-care-cost

This is info for citizens. Otherwise private health insurance would be needed.

Is Mom an Aus citizen or permanent resident?

I gather from the original post that the travel issues have been largely sorted out: the OP is asking what she needs to have ready when they arrive, not about how to get her to mother on the plane.

My answer would be to brief somebody qualified - an occupational therapist, preferably one attached to a hospice team - to come and do a full assessment. Beds, mattresses, wheelchairs, walkers have to be individually specified, you can't just buy them off the shelf and expect them to be correct.

Gait belts are no longer recommended.

Use technology. The OT can liaise with the rehab team, and it should be possible for him/her to join a therapy session via Zoom or Teams to observe.

While you're in the US, ask the therapists to show you and observe you moving and handling. Suggest your husband does the same at his end.

Continence care: explore some of the larger online specialist retailers, good not only for ordering supplies but for advice on what you might need. As well as pads/pull ups, you will want ample bedlinen designed to suit the mattress; as well as disposable bed pads, a capacious foot-pedal operated bin, bin liners, portable washing equipment, disinfectant spray suitable for the mattress cover, disposal bags.

A slide sheet/glide sheet of the correct size (they're cheap, get two or three). There are fancy integrated systems which are becoming popular with OTs but if I were you I'd avoid them - they're a pig to launder, they're expensive, plus making sure you've got the right sheet the right way up and the right way round is no joke at two in the morning when you're trying to get your mother back into bed in a hurry. A standard slide sheet is a doddle to use once you've got the hang of it and works with all bed linen. Again, ask the rehab team to show you how.

Communication - how can your mother call when she needs help? How can you monitor her without intruding on her?

But a proper assessment will deal with all of these issues and more in context. It's really not a DIY job.

Obtain Mom's Doctor's HONEST opinion & advice regarding how sick she is & ability to travel.

Will Mom be stable enough for such a long haul flight?

Is a medical escort flight needed? Is that possible? Affordable?

IF able to travel, Mom would need to qualify for & obtain an Australian Visitor Visa, be fully vaccinated for Covid & also able to meet quarantine requirements.

Is ALL of that possible?

Is Mom is a US citizen? I cannot find any info that US Medicare has any reciprocal arrangements with Australian Medicare - therefore all medical treatment costs (doctor bills, hospice services, in-hospital stays) would need to be covered by international travel insurance or self-funded. (I cannot image any insurance will cover).

Funded home care health services eg aide visits require an aged care needs assessment. The wait list is many months (not sure if non-residents are eligable). So personal care attendants would also need to be self-funded.

I am so sorry for your situation.

I think you need to work out what is really important now - for both you & Mom. Is it being with together? If so, you go there instead. If you can't, then you can't. You will need to face time every day instead.

I don't know how much time there is here. Don't let magical & wishful thinking waste your time.

Kate, have you considered moving back to the states temporarily if you’re a dual citizen?

That way, you can start by shadowing the caregivers at her nh and observe the equipment used for at least 12 hours a day. You will also get to know her separate hospice workers who will help her get supplies should you choose to care for her in an apartment for the three of you.

Or you may find that being there for her daily at the home is enough. It might be worth discussing with hospice where she is in her transition.

While your heart is in the right place, your definitely not thinking clearly.

What about Covid testing?
What about possible Covid quarantines?
What about Covid vaccinations -- yours and hers?
What about passport and visa requirements -- are you both already Australian citizens?
Are you prepared for the travel to possibly increase her problems and hasten her health deterioration? See https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5288090/ for an example.

Sometimes we don't get what we want and are lucky to get what we need so forget about trying to take her back this late in her life and instead give her the best possible remaining time in the USA.

Be realistic -- this is an impossible dream.

No commercial airline will let her fly, and a private air ambulance would probably cost $100,000.

It's time to make realistic plans and stop burning brain cells and money on a fantasy.

The Australian side, now it’s morning and I’ve just woken up.

1) My own personal experience was flying across the USA from New York, a day’s layover in San Francisco (which I thoroughly enjoyed), a long-haul flight to Sydney, unload again with short wait, then a 2 hour flight to Adelaide, then taxi home. Then jet lag. Where are you starting and finishing? It makes quite a difference.

2) On my long haul flight SF – Sydney, the staff refused to fill my hot water bottle to help my back pain – a health hazard for them. I wondered how they made tea and coffee. You don't get much personal service on a jumbo jet.

3) My MIL came from London direct to Adelaide (with stopovers where she stayed seated on the plane). She walked onto the plane (rode her bicycle the day before she flew, last time). She had to be removed in a wheel chair by a fork lift, an hour after landing in Adelaide. I watched this from the chain fence with my current BF, my ex waited inside with his current GF and the children, trying to find out what had happened to her. With a very rapid change of allegiances, the two men eventually put her in the car, took her out at my ex’s house, and toileted her (thanking heaven for my BF’s considerably greater strength), while I drove the children back. She was totally distraught.

So that’s the flights – have you checked this in detail with the airline? I find it difficult to believe that a standard flight would accept her.

4) I sat on the Board of the SA Royal District Nursing Service, which provides in-home nursing, but not long stints. Domiciliary Care provides visits for specific tasks, but not long stints. When I was involved, the Hospice (locally called Palliative Care, which has a different US meaning) was residential in a special facility. More recently, my ex-husband had the same level of care in a NH. I haven’t heard of in-home Hospice, but I’m now out of that loop. All this is State-based, with different agencies and systems in different places, and it changes from time to time. Getting your head around it is well known as a difficult issue.

5) If your mother is as ill as she sounds, she won’t be seeing much locally – just the interior of another bedroom, hospital, or NH. Who wants to get back to Oz, her or you? If it’s her, it is ONLY in her imagination. If it’s you, extending your stay may be a trial, but it’s far easier than the trip.

6) What arrangements have you checked if you have to be unloaded part-way through the trip, or if she dies during it? Or if the airline thinks they have to do an emergency landing? What are the hospital arrangements for the few potential plane stops along the route? What insurance have you arranged for the very very substantial costs that are risked?

I think that your family (including DH who has bought a hospital bed) have pictures in your head that don’t include the bad bits. I would not do this myself, and I really really ask you to think again. At a minimum, talk seriously to the airline, not just a ticketing agency.

I hope this helps you make a good decision, yours Margaret

How did your mother come to be suffering from malnutrition? Was she self-neglecting?

Is any part of this unworkable plan driven by guilt you feel over the fact that your mom fell into ill health while in the US and you in Oz?

Mom needs 24/7 care. Will you employ a nurse to assist on the flight?

How will mom's 24/7 care be paid for in Australia? Is your plan for her to live with you, your ill husband and teenaged children?

Are you planning a longhaul non-stop flight or several shorter ones? Have you cleared the O2 usage with the airline? Thought about the incontince changes in those tiny restrooms? Or are you able to travel first or business class on Emirates and have this all planned out?

Come back and tell us a bit more about the nuts and bolts of this plan.

Kate, I am reading all of the responses to you after my own.
The more I read the more I know that no matter what your wishes are, or your Mom's, an attempt to do this falls into the category of wishful thinking.
I don't believe this will work for ANYONE,and that includes your Mom. Well people often suffer blood clots from plane journeys this long. Imagine your Mom with her complications, and what it would mean for her.
You are saying you are reliant on private care when you get her there.
This is all not going to work, imho. I encourage you to be realistic and to rethink this.
I am so sorry for what your Mom and you are going through. She should return to care in facility now. Whether you stay or attempt to go back and forth is a moot point. I think your plans won't work. I wish it were otherwise.

I suggest that you contact Hospice here. Let them do initial evaluation then tell them that you will be taking her back with you and ask that they arrange with the Hospice you chose to transfer the medical information.
Let them know the date that she will arrive home. So if possible they can set up a visit for the next day or so. (I understand that due to the length of the trip neither you nor mom might be in the best condition for a medical visit but that might be the best time for her. It is also possible that the Hospice might want to arrange a day or two in their In Patient Unit so that she gets stabilized after the trip, they can then arrange transport to your house.

To answer your question..What are you forgetting....
that your husband, your children and you need to be priority. Your mom is important yes but you have to put most of your energy in your family.

Hospice should provide the Hospital Bed and any other equipment that you need.

Just be prepared to accept that you can not care for her yourself (even with the help of your family) and that she may have to go to a Hospice In Patient Unit, Skilled Nursing facility or other facility that will be able to meet her needs.

Please consider this, added to all of the other valid comments you’ve received-

A time may come when there are NO GOOD DECISIONS to be made, no matter how much you OR your dear mother wants to return to Australia.

We all have dreams that we may never be able to fulfill, and owing to the very precarious nature of your mother’s numerous health issues, this dream can turn into misery in the blink of an eye. Then too, most of us, somewhere along the line while carrying for our cherished elderly either try, or consider pulling off the “miracle”.

How often that’s successful for anyone is impossible to guess, but in your mom’s situation there are so many many factors that can do nothing but impede your desire for her to be successfully returned home, and the “unknowns” not possible to consider, it just seems like doing your very best for her HERE may be the chance that offers you and her the best remaining time together.

I think in the long run that physically AND emotionally you’ll all be served best by choosing a safer, more conservative course.

Sincere thoughts and hugs to you and to her.

In one sentence, if your mother needs 24/7 care, then NO, she cannot be left alone at all, ever, under any circumstances. That alone should tell you that your mother needs more care that you are able to provide her inside of your home. That she is incapable of flying from the USA to Australia on such a long and grueling flight, that your home is not equipped to care for a person in her condition, and that you and your family are in no position to be caretakers for her.

That may sound harsh; it's intended to. You are in WAY over your head with this undertaking and have no idea what lies ahead.

Why not leave her in the USA in the Skilled Nursing Facility or in a Hospice House, and be with her there? Take time off from work and keep the vigil with mom as OTHERS care for her during her end of life journey? That is the question to ask yourself.

Sending you some hugs and prayers as you try to figure out such a huge undertaking. My heart goes out to you in this difficult time. God be with you.

This is pretty easy. Good luck finding and airline that would agree to her being on a flight to Australia. The long flight can be a lot for someone who is healthy, let alone someone who is not. I take it you would probably book a non stop flight? Do you think she could handle that? As other members have mentioned, what happens if there are issues, which is a good chance of happening? How would you handle it if she were to panic, while the plane was say flying over the ocean, with no where to make an Emergency landing for hundreds of miles?

Would she be able to deal with jet lag if she would make the trip with no issues?

These are questions you need to ask yourself before undertaking such a stressful endeavor.

Maybe to give you more insight there is a video on Youtube of a kid having a tantrum on a flight half the time of the flight to Australia

It's titled: Man Films Toddler Tantrum On Long Haul Flight.

Are you sure that you will "really appreciate a reality check"? Because if so, here goes: Your husband is in poor health, you have two teenagers, and now you want to add your frail, ailing mother from a foreign country into the mix?

Assuming you can even get her on a flight to Oz, which I think will be unbelievably more difficult than you are envisioning:
Is your house setup with wide doorways and hallways?

Does your bathroom have a large walk-in shower?

Does your bathroom have a raised toilet?

Do you have a ramp to get a wheelchair in and out of the house?

Do you have a vehicle that can accommodate a wheelchair folded?

How much money does she have saved to pay for her care?

I typed a long thing and lost it but raven pretty much covered what I had said.

Talk about stress! I really don't know how you are going to do this.
From what you wrote, your Mom is dying and you want to put her through this? I am flying economy to Alaska soon. The 1st flight is 3 hrs with a 4 1/2 hr layover and then another 6hrs on another flight. I dread having to sit 9 hrs on a plane. I wasn't made aware of our flights until we made final payment. I may have considered not doing the trip.

I cannot imagine a Doctor signing off on this. Or the airline allowing it. Mom is dying and I can't understand why u would put her thru this. Never heard of a kidney injury. If you mean kidney failure, Mom's kidney's are not functioning correctly. With that and her CHF she is probably retaining water. Which means water pills, which means peeing a lot. And do u plan on Mom sitting up for this flight.

I think it would be better you staying in the States and having hospice care for Mom in a facility. She has too much wrong with her for you to care for her in her home. Hospice in home the family does most of the caring.

I am so sorry to hear of your mom’s poor health.

May I ask what your relationship with your mom has been like over the years? Hopefully it’s been great but we do see a frequent dynamic on this forum: adult child of an abusive or “difficult” parent upending their own lives (including that of their own spouse and children) to try to finally earn the love and approval difficult parent would never and probably can never give . . .

It's wonderful that you want Mom home but start with the logistics of a 17-hour flight for an incontinent, somewhat fragile senior who's oxygen dependent(?). ~ Will you need a travel nurse?
~ Will the airline accept the liability of transporting someone who's seriously ill?
~ Has a doctor signed off on such a lengthy flight?
~ Have you looked into medical flights? They can be stupid expensive, charging thousands of dollars. But that price includes medical support on the ground and during the flight.
~ How comfortable would Mom be, having to sit at close quarters with strangers? (Thinking of the embarrassment of incontinence in a public setting)
~ Can Mom's dietary needs be met in-flight?
~ Are embolism stockings enough to prevent a blood clot on the flight?
~ How much stress will those 17+ hours put on your health?

Count the mental, physical, and financial cost. In an article about doing our best as circumstances change, someone commented that there's a gap between desire and reality. Sometimes desire has to yield to reality. Take a few deep breaths and consider the questions above if you haven't already. Others may suggest themselves.

Best wishes for you and your family.

I would want a prognosis from her doctor. It sounds like they are telling you, in a round about way, that she is at deaths door. Is this true? Does she only have a couple of weeks left?

No matter what you do, this is going to be as stressful as you can imagine. You have to do what is the least stressful for you and not cave to her broken heart. We don't always get what we want.

What about her dying in transit? Can she sit in a plane seat for the entire trip? Can she get into a plane bathroom to use the toilet or are you going to have to change her? What about the other passengers? They aren't going to be understanding if she craps her britches and you can't change her. Are you able to deal with these issues? What if she panics and has a meltdown that causes an emergency landing and disembarkation at any close airport?

I only bring this up because you said you need to manager your stress and these are real issues traveling commercially with someone in your moms shape.

Will the airline even let her fly in her condition? Because you have purchased a ticket doesn't mean they will let you board the plane.

I would ask the doctor, "If this was your mom, would you do this?" If they say no, you shouldn't attempt it.

I am so sorry for your situation. Losing a loved is difficult and being half a world away from your home makes it that much harder.

May The Lord give you wisdom, guidance and comfort during this season.

Kate,
We have a member here who brought her ailing mom to the us. They have had to deal with mom holding her feces in her hand in front of the toilet wondering where the fecal should go. There is no solution but this family, no hospice, no nothing.

Before you do anything, check to see what aus will cover in terms of hospice, at home and acute.

Could I start by asking you what support system your Mom has in the USA? Because quite honestly I cannot even begin to imagine the acuity of the conditions you are mentioned for a move to another continent, another health care system, and that is even with those folks who are taking on such a thing being PERFECTLY well, hale and hearty, and wealthy to boot to say nothing of living in an area with an acute care hospital--and a big one at that.
I just can't begin to imagine where to start.
Margaret on our site is an Aussie and I am going to search her up and ask if she'll look specifically at your post.
I am a retired RN in the USA, and I will tell you right now I have seldom looked at a post and been so instantly overwhelmed. I would not be attempting this move. I might stay here, but with two teens I don't see how.
What prognosis do you have for Mom? What is her age? What is her general personality.
I understand your WANTING to do this. I simply cannot imagine how it can all be done.
That surely isn't to say it cannot be done. I just am having a difficult time imagining.