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My mom has MS and dementia and is in an assisted living facility. She can’t speak and is in wheelchair. My stepdad was taking care of her and just died. No family left near her and I worry so much about how she is being cared for. I hired someone to visit with her because I cannot being so far away. I want to move her ASAP. Any suggestions on the process? I think another facility would be best but I also think of having her at home which has limitations because of stairs. She is unable to help if she falls so it’s difficult for one person to manage.


Has as anyone moved their parent across country? I am trying to piece together a plan.

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I don't have an answer, but someone will.
I just wanted to say it is lovely what you are doing. May God bless you.
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WenjiD Jan 2019
Thank you! We can use all the blessings we can get.
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Hi, WenjiD. I can certainly understand your desire to get your mom closer to you.

I don't have any personal experience with this situation, but there have been a few similar posts from other folks recently. As I recall, there were two main issues: the nuts and bolts of transporting a disabled person/person with dementia a long distance (could she possibly fly, being in a wheelchair? Would she be scared or disruptive, would there be toileting issues? Or could you somehow arrange transport in an ambulette or . . . ?) and qualifying for Medicaid in a different state, waiting lists for a particular facility, etc.

I hope other people have some more info for you.
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WenjiD Jan 2019
Thanks for your message. I’m looking at flying her.

I hope to see two facilities ties this week.
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Another thought: perhaps you could research facilities near you that might work for your mom, and ask them how they would suggest you proceed. Like, have they had residents transferred from other states and if so how was it accomplished?
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"Placement comes first" - what facility?

Step one in your plan is to research options in your area.
Make a shortlist of promising-looking facilities.
Visit some, say three.
Once you have your ideal candidate facility, talk to its Admissions team and use their expertise on headings like Funding and Logistics to guide you through the process. How helpful they are, and how well they liaise with your mother's current ALF, will actually be quite a good test of their capabilities.

It is a *heck* of a project, but be comforted. Even though this is your first (let us hope, only) go at it, it is accomplished every day and you are not attempting mission impossible.

Are there any major obstacles beyond the practical? Money, interfering friends or relatives, concerns that your mother won't be able to adjust?

PS - Step 0 in your plan should be the thought of moving her into your home. Scratch that. MS is a tall order; dementia makes it a 24/7 job; the disruption to your mother's familiar routine would be off the scale. It's just not sensible to take it on.
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WenjiD Jan 2019
Thanks for your message. I would LOVE to bring my mom to my house. As you said it is complicated. I could potentially hire someone to help me instead of paying for a facility. Also we have mega steps at our home and I priced it out for a stair glide and it would cost about $20,000.

My my mom is pretty easy going and I am the only family left. She’s in diapers so I think a 5 hour plane ride would be ok. I’m thinking about getting my cousins daughter who is a nurse to fly with me.

Major complication is financial— it appears that my stepdad may have looted (and given to his kids) much of the money that would be used to take care of her. I’m still researching that but it’s looking like that is the case. It’s very sad that someone would do that.
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I would talk to an elder law attorney, I would be surprised if he could give marital assets to his kids if she is still alive and in need.

It would be worth a couple of consultations to find out if there is any recourse.

That just breaks my heart. I hope you find it was illegal and she gets the money back.
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WenjiD Jan 2019
Thanks
it breaks my heart too. I never asked my parents for money and would never consider taking money from someone else. They worked hard for the little they had. Her retirement Ira (in her name) was completely drained after the dementia set in. A second retirement account that was in her name (a small inheritance from my grandma) was on its way to being taken when sd died.
i am waiting for access to the bank (with power of attorney) to confirm my suspicions. He basically told me that he was going to give his kids the IRA when he died but by the time he told me that, the money was already gone. He wasn’t going to — he did. I can see on a statement that he transferred a large sum to another account but I don’t know who owns the account that received the money. The evidence I have so far is fairly compelling. But the bank is moving so slowly. Once I can double check who received it (I hope I can) maybe a lawyer can help.
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WenjiD, I think the very first thing to do is to talk to the Staff at the Assisted Living where your Mom is currently living. Find out from them if they think Mom would be ok to fly. And depending on their assessment, proceed from there.

Some elders who have dementia, or not, have issues with claustrophobia. Don't get me started on the very cramp tight seating in today's planes, and restrooms that are maybe 2 feet by 2 feet. Anyone with claustrophobia would panic. Anyway, food for thought.
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mally1 Jan 2019
Wow FF! I haven't flown in over 25 years and didn't know that; certainly won't start now (wouldn't anyway, objections to TSA procedures).
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I hope you have POA for financials and Medical. It will make a big difference in getting things done.

How often do you see Mom. I think a call to her present AL would be a good place to start. Talk to the RN in charge see what she thinks. If Mom doesn't speak, sounds like she is pretty much into the Dementia.

Diapers don't help if someone does a #2. Its hard enough changing someone in a reg bathroom let alone one that is the size of a portable toilet. Can't get one person in hardly let alone two with the door closed. And the smell in a confined space... I wouldn't want to be a passenger on that plane. And what are you going to do if Mom freaks out. Its hard for a person with Dementia to make changes. They overwhelm easily. Being on a plane in close quarters with all those people is not a good thing. My Mom was ready to go "home" an hour after we got someplace.

Then u talk about money. Medicaid does not go over state lines. Then there's SD giving away money that was also considered Moms, too. Could effect getting Medicaid in the state she lives in. Living with you could be very stressful for both of you. Stress is not good for an MS person.

When hiring for homecare there is a lot that goes into it. Will they be on time, show up at all. What is ur B plan if they don't. You will, need to keep good records. Take out SS and match it. I live in a split level, 3 sets of stairs. No wheelchairs here or someone who can't do stairs.

This is a LARGE undertaking. You really need to have your ducks in a row. You really have to take time and think thru this. Good Luck and come back and tell us how you handled this. We all learn from others.
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WenjiD Jan 2019
Thanks for all your thoughts. I do need to get my ducks in a row.

my mom has suffered from constipation her entire life and this is one time that it will be a good thing. If she does go, it will be a small hard rabbit pellet.

And she is really easy going. She showed some anxiety about a year and a half ago but I think she is less anxious now...maybe she’s more confused. She was always the nicest person you could ever find and she still is. Her reaction to new events and people is fairly mild. If I’m there I think she’ll be ok but I like your idea of asking her current facility what they think.

She is unable to move but I might consider getting a sedative in case it is necessary (but that might cause more problems— like dead weight if she falls asleep) and flying with a nurse.

Working on my duck placement.

Regarding medicaid. She does not have it yet. How would that work...if I move her to my state and she gets residence? How long before one can apply for Medicaid?
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WenjiD, what state are you in? Maybe someone will have some info about Medicaid eligibility there. And what state are you wanting to transfer her from? How long a flight are we talking about here?
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Countrymouse Jan 2019
Five hour flight, apparently. See reply below.
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Wenji I'm sorry to read of the financial issues. How are your mother's ALF fees being paid?

I don't mean this to sound critical but it is really important: how much have you seen of your mother over, say, the last couple of years?
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WenjiD Jan 2019
why are you asking about time spent? A fairly decent amount I think.
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I'm not asking whether you're a good daughter who conscientiously visits her mother. I'm wondering whether you have seen her at breakfast, lunch and dinner, whether you've assisted with her bedtime routine, whether you have spent whole days or nights with her. You say she's an easy-going person, and that's great. But how do you know? That's why I asked how much time you have spent with her recently.
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lealonnie1 Jan 2019
You are so right........elder care at home for THIS level of care ie: wheelchair and unable to speak, is something most of us are not equipped to do.
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WenjiD,
I see there are several issues here. Senior services, including federal services administered through the state, vary from state to state, and within that from community to community. Examine how the services and costs differ from where she is to where you are. And that brings me to the next issue: I do not know what to suggest about the bank account situation, but seriously advise you to find a good elder law attorney to help you negotiate all the legal authorities you now need, regardless if you move mom close to you or not. I could not have done everything necessary for my mom wo her attorney whom she hired 20 yrs ago, or the paperwork he drew up (POA, etc).

I don't know if there's any legal recourse about the stepfather's actions, but he could have put your mom close to needing Medicare, and the government will want an accounting where the money went. Regarding the bank, my mom's bank (a nation-wide bank) demanded I provide all legal documents and had their legal department examine them before allowing me to act in my mom's behalf. My mom had already put my name on her bank account, but to conduct other business besides writing checks, they did a full legal examination of documents.

You've got a lot of work ahead of you. I hope you can find senior advisors for you near you, and near where your mom lives. Some communities publish a free senior advisor directory (like a phonebook) that I've found in libraries, pharmacies, etc.

Hugs, Live247
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WenjiD Jan 2019
Thanks so much. The paperwork is really overwhelming! Finally got through to the bank and found out that they are going through paperwork with a fine tooth comb and are questioning some aspect of the documentation. I’m not sure what the outcome will be but in the meantime I’ve asked the doctor to write a letter explaining that my mom cannot take Care if herself. And new docs cannot be made. I wasn’t prepared for how hard this would be— it’s very time consuming. I have to remember that there will be light at end of the tunnel.

Regarding dear sd, I received life insurance docs for him today and found out that his kids are the beneficiaries, not my mom. I’m so sad for her. He’s taken her money and given it to his kids. And he put her in “the cheapest home he could find.” He actually told my aunt that — claiming he didn’t have money, while secretly giving it to his Family.
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Mally1, and Wen, so much has changed in regard to flying. In the past, you use to be able to dash into the airport with only 15 minutes to get to the gate to board the plane. Now a days, you need to be at the airport 2 hours before your flight [3 hours with the Federal shutdown or if there is bad weather along your flight route].

If family is coming to see you flying out, the family is no longer allowed to sit and wait with you at the gate. And family is no longer allowed to greet you when arriving at your gate, you have to meet in the main airport section, or down in luggage pickup.

Before packing, one has to go to the TSA website to check to see what is currently allowed or not allowed when going through security. Carry-ons have different rules then checked-in luggage. Example, you cannot bring a water bottle through security, it has to be tossed. You can purchase water in the "secured area" to bring on the plane.

If you accidentally pack something that isn't allowed, TSA at one time had mailing envelopes so you can mail that item either back home or to your location.

One has to dress correctly so not to buzz the metal detector. Avoid belts with metal. Avoid shoes that have metal. Even metal buttons on blue jeans can cause a buzz. Forget about wearing jewelry through security. If you have a pace maker or other metal in the body, check again with the TSA website to see what is required.

Shoes have to be removed going through security.... not easy trying to put shoes back on with no place to sit :P There were times I felt like wearing just a hospital gown and paper shoes !!
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jacobsonbob Jan 2019
FWIW one can bring an empty water bottle through and then fill in at one of the water fountains near the boarding gates. I do this all the time (rather than wasting a couple dollars).
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If you are considering flying consider going business class. Very much more expensive but Mom would be far more comfortable. I believe the airlines are quite good about moving wheelchair patients around. If you limit her fluids there should not be too many bathroom visits.
Another idea is to go by road. I know it would take several days but you could fly to her location and hire an RV and drive home.
the price for the stair lift sounds excessive. We installed on for a straight standard stair and it cost around $3000.00.
There are also elevators which take up little room which would allow wheelchair transport.
I understand your desire to move Mom closer but what does she want to do ?
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WenjiD, before you get a stair lift, have your Mom test drive one. Would hate to see you spend money on something that your Mom might be scared to use.

Oh, have you thought about train travel? I realize finding a train station close to home isn't always possible, but one has much more freedom on a train. Much better leg room. And you can get seats right next to the restroom. And try to get seats next to the dining car, so it would be a very short short, but wobbly, walk to the dining car. Plus reality TV right outside your window.

One can even buy a sleeper car space, a private room. Less noisy for Mom, plus she can sleep if she wants.
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JoAnn29 Jan 2019
Great idea!
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I moved by dad to my house in a car against dr's advice. It was a 7 1/2 hr drive. Dr wanted me to hire an ambulance. I hired a male caregiver that sat in the backseat w Dad and turned on child locks. Dad started acting out (wanted to take his clothes off). Caregiver & I put sweaters on & I turned a/c to max. Within 5 mins he had put his clothes on. Dad settled down & went to sleep. Dr did give me some rx for him, if he got out of hand. We packed snacks & went through drive-ins. I paid for caregiver to get back home.
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Going through similar issues with my younger brother.
Bank nearly drove me crazy as my brother has a retirement account and owns a house - thus, has assets. Not enough to take care of him, but he has assets. There lies the problem. He was, however, a working poor person. Interestingly enough, if he had nothing and was on Medicaid, his transition from hospital to rehab to long term care would have been easy......hard to understand.

Get a Durable Power of Attorney and a Medical POA. You can do this yourself or use an attorney,

You absolutely MUST follow/supply ALL requirements, documents.. that the bank, investment company...any entity asks for or they wILL NOT recognize the POA you have.

Bank wanted Durable POA for checking & savings account
*** Be sure to check the correct lines... not all lines.
***Be sure to indicate Immediately OR supply doctor's letter as to why a POA is needed NOT BOTH
Same bank, different department - For Retirement Account - DIFFERENT and MORE documentation needed. Wanted CERTIFIED Durable POA for me to use my brother's funds to pay doctor bills. to get the POA certified all you need to call the county in which your mother lives, pay the fee and they will certify it and mail it back to you. but first call the County Court for information.

My autistic brother lives 1,000 away and I would love to have him near me, but I have not lived near him in 53 years. So, I remember him as a young healthy person, not as he is today. As he cannot make decisions by himself, or says "NO" to everything,(has been declared self negligent) I am not sure I could safely take care of him and remove him from the only town he has ever known, nor do I know if I could transport him safely.

Best of luck to you.
GEB
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