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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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"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 14, 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'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 15, 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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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 15, 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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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 15, 2019
why are you asking about time spent? A fairly decent amount I think.
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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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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 14, 2019
Thank you! We can use all the blessings we can get.
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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 15, 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 14, 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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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 19, 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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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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