Has anyone moved their loved one across country or have any input on this?

Please do not move you mom unless you have a full and open discussion. Do not put the bitterness that could happen into the picture. My daughter in law and I love shopping together. We enjoy life together. But I realize this is not a normal situation. I am 75 and in great health. Oh that is truly honest. My son and I have a great relationship. However, if things ever change, I will be the first to say. Opps, think we made a mistake. Talk openly...take one or both to Dr appt. Share grocery bill. I love it.

JCB1169; an incontinent person is allowed in an ALF, as long as they are coherent enough not to urinate in public places, etc. The caregivers handle my Mom's Depends and stuff without an issue. I guess each ALF is different as far as some rules & regulations are concerned. In the 2 places my folks were/are in, the #1 rule is that they cannot require 2 caregivers to assist them; that's when a SNF is required. The only time an ALF will allow a resident to be a 2 person assist is when Hospice is involved, since end of life is imminent.

MJ1955, sorry to hear of the situation you're in, but caregivers have every right to come here TO complain, as you call it! Where else can we go to vent our frustrations and find *supposedly* empathy and compassion? It's fantastic to have this forum so we know we're not alone.

Lealonnie1 has really written an excellent depiction of what the experience is like. I am the one of three daughters who has overseen my mother's care now from age 67 to current age 96. It has been my retirement Full-time Part-time job, and it is very hard and relentless work. My mother is now in MemoryCare where she is being well-taken care of, with my close tutelage.

I looked into moving my mother from PA to SC. What a nightmare! Social workers and our family doctor (who works in local nursing homes) advised me against it. My mom has dementia and is wheelchair bound. If your mom is on Medicaid the red tape and paperwork is incredible. Not to mention the cost of moving her. My estimate was about $4,000 to move her by medical van. She could not be on Medicaid in two states at once, so she would have to give up her Medicaid in PA and then live in SC for 30 before she could even apply for Medicaid. And there is no guarantee Medicaid would even be granted for her--could take up to a year to find out. The consensus I got from the professionals in SC was--if she has a Medicaid bed in PA be grateful and leave her there. With all the uncertainty with health care these days, be glad for what you have.

If she is on Medicaid, it will be a disaster in paperwork. I looked into moving my mother (who has dementia and is in a wheelchair) from PA to SC. Every professional I talked to in SC advised me against it. Told me to be happy she had a Medicaid bed in PA. With all that's going on with healthcare these days, I was told to leave well enough alone. Do your homework before you make any decision. And the cost of transporting her from one state to another was (for me) estimated to be about $4,000. It is not an easy fix by any means.

I thought about doing this. Dad had been in his home 60 years. All his stuff and memories were there plus a couple of grandkids nearby. He was proud of his home. He liked sitting in the sun in his driveway. He liked occasionally using a tool in his garage. He knew where everything was. He talked to his very loving neighbors and friends on a regular basis. He had a routine. He was doing well except for health issues that kept cropping up. He just couldn't be alone any more.
I went to live with him. One sister occasionally gave me a break - hard for her as she has Fibromyalgia. But we thought it was best. I feared many problems moving him. An airline trip? A car with many hotels on the way? What about all his stuff? Pretend it was temporary? I didn't think he had the fortitude to make the trip and also the health issues would have been a real challenge - Catheter off and on, arthritis, prostate cancer maintained with injections, meds - would need new Drs to get them....liked his own.
No. It all worked out with a lot of work and yes our health did suffer in the process but I think it is better not to move them. He hated the heat in AZ where we are. He loved the north country where he grew up and lived.
We were there 3 1/2 years until he passed on and then another year to deal with stuff and estate. Not over yet but no regrets about not moving him. He was 87 when it all started going down. Too late in my opinion.

I am so sorry - your mother has dementia and that is different. I wish I could delete my post. 
Dad didn't have that. I think moving your mom might be OK. She will probably need professional care at some point and closer might be better. On the other hand, a family I know put their mother into a Nursing home in their home town when she got so bad with alzheimer's and they would take turns traveling long distances to see her there. This is a painful fact but somtimes she knew them, sometimes she didn't. It tears your heart out - you want to help but sometimes it is just so hard. I don't think most people can go on too long taking care of alzheimers sufferers 24/7 by themselves. 
The move itself is the challenge - how to do it? Maybe contact airlines? Wish I could help. It was too complicated and just too much risk for us. 

How does your sister feel towards your mother? And how
would your sister feel about ending living arrangements
with her mother?

Two years ago. One would have thought she would rather go with my sister, who has children of her own, and she did make that choice initially even though i am her first born, but once mom found out she would be in a home there and just visited by sis and did not trust her to keep up the commitment she was making of visiting and taking mom out often, mom quickly and gladly agreed to come live with me. i flew there and drove her back in her own car. Her ex-husband had a missing person out, and we had to stop in PA so mom could tell them yes she wanted to come with me. the rest of the trip was hell. don't let her have a phone, little sleep for you, and be prepared for cops, ambulance and nasty scenes in public along the way. don't drive at night and beware of rest stops at night, difficult scenes abound if it's dark. be firm, don't let others push you around too much because they think they are being good samaritans when you're having a difficult moment, but give in if someone calls a cop. have everyone's proper id ready, as well as any other pertinent papers (i didn't have P.O.A. until after i got her here), don't get flustered when explaining the situation to a cop. most of the time they will believe you, and you will either go on your way or go for a hospital visit. no matter how much you prepare, how nice you are, how thoughtful you are, it is never enough, but you'll eventually get there. probably best not to make the trip alone, bring a family or friend. i was alone. and i'm no spring chicken, 56 at the time. And yep, it has been hell, but I have never regretted it for a day and no she does not hate me. sometimes she mistrusts due to the dementia, confuses me with other people especially on the trip, the people she didn't trust like her ex-husband, there has been a lot of my screaming and yelling from frustration, but when she is in realization that I am me, most of the time, she is glad she is here. she only had dementia when i brought her here. she's developed cancer since, two bouts, the second left her in a wheelchair due to the doctors' slowness of wit and non-belief in mom's complaints and my observations, just because she was having a good day by the time i drove her fifty miles to the doctor. i am quite sure she would have been worse off now had she gone to the home with my sister. two things: first, mom knew who she trusted and who she didn't, even through the dementia, and came with me; second, the pain in her arm she described as something growing in there, and she was exactly right, and the pain in her back did become worse and turned out to be as bad. like i said, because of the doctors' ineptitude she is now in a wheelchair, incontinent, and still has the dementia of course. she's also a sundowner, which made the trip two years ago really hard. but she is happy to be here, and though she misses my sister and the grandchildren most of all, she still rathers to be here than there, and she'll tell you that if you ask her. by the way, the sister hardly ever calls, never mind came for a visit yet. :-)) Once you get her home, you will have a lot of banking and paperwork to do, so make sure you get as much from her house in mail and papers as you can find. i still haven't gone through all of it, but it helped get all the stuff taken care of. good luck, make the decision that's right for you, and commit to it with a squirrelish intrepidness. in the throwaway society that the world has become through globalized industry, somehow our elders have gone from being revered to simply being part of the trash to take out. to put it in the twitter vernacular of that dummy/puppet donald trump, "sad". (Please let me know if you want more details of my experience).

Oh by the way, i recommend flying back, i should have done that but she wanted her car and i didn't know what else to do about that at the time, and I needed to get her out before her ex-husband got wind i was there. would have ended badly for him, and mom would be visiting me in jail, how ironic would that be! but i do recommend flying back.

I moved my mom 5 yrs ago from louisiana to Eugene or..she was in a nursing home in louisiana..she,adjusted very well...she was very confused but she was ok when I got her to a memory care center..i know everyone us different..i would ask her doctor maybe to see what he says..hope things work out for you and your mom.

Dontask:

As you note yourself, 1 mile or 1000 miles, it does not matter - change in place/routine is disruptive for someone even young and healthy, but more so for someone with dementia. My younger brother was stubborn about insisting mom move to AL first when she *really* needed the memory care AL, and those showing us around and discussing this agreed and went on to say that just moving from AL to the downstairs memory care will be disruptive and confusing! One move vs two. Safer vs not safe. He just could not see it and did not bother to listen to my advice/informative links or research it himself.

HOWEVER , leaving someone in place who is a danger to themselves or others is WORSE. If the situation with mom and sis is volitile, then some action needs to be taken. If mom is in danger physically or medically, a move is in order. It would be *ideal* if we could all leave our parents, or whoever, in their own home, providing continuity as long as care and safety can be provided, but this is not always the case. After seeing the cost of AL, my brothers were saying for that price I will take her in... I tried my best to make them see sense - this is NOT like our grandmother who just needed to be cared for safely - she did NOT have dementia. One brother still works, the other is not local. Do you research bros - WHAT are you going to do with her all day? She *really* needs social interaction and activities. One was getting annoyed with the repetition even when visiting, so just what will you do about this when it is all day every day? Are you up to changing/cleaning up with adult diapers, etc? It is NOT just about taking someone into your home.

To OP Colberry:

The advice given by others is sensible. Get a better feel for why mom and sis do not get along. Is it just a personality issue or is it the caregiver backlash? I could see this kind of "behavior" with my younger brother (by 10 years). He was "the baby" and at this point somewhat favored. If the issue with your mom is backlash, then YOU will potentially become the focus after the move, perhaps even more so because mom will be disoriented and possibly unhappy at not being in her own home. Example: when we had to take the car keys, bro did all the talking and taking of the key. I suggested when leaving that he disable the car because I knew she had another key. The very next day who gets the NASTY phone call about the key? ME! I never touched the key and said nothing while there. The second day, another NASTY call for me to get down there and fix whatever I did to the car!! So, she DID have another key, but the backlash was all at ME, not the person who said the car has to go and took the key.

Assess mom's current condition, physically and mentally - this is where that visit suggested would be helpful. A few days won't do it, as many with dementia can perform better for a while to prove they are okay. She may NEED to be in a safe place. Consider other factors, like is your home amenable to mom's needs. Are you up to caring 24/7? Mom may not need 24/7 care NOW, however as dementia progresses it will get harder and take a toll on a caregiver. Our mom *can* be sweet to people to their face, but beware if you mention anything that she does not like, and behavior with family members was not always so sweet. I read up a lot on dementia and tried to inform brothers of what I learned, even before finding this site. I made my decision - no way could I physically care for her even now, much less when the condition progresses, but emotionally/mentally no way Jose! She was difficult enough before this developed, and can *really* get nasty when she feels that anyone is wrong (flipped out when doctor told her it is not safe for her to remain alone).

The Medicaid issue mentioned by others is also a real concern. From what others said, you would have to cancel MediCal if she is on it and reapply for Medicaid in your state, not knowing if it would be approved. If you feel that you can do it, have a proper home setup and hopefully some assistance to give yourself a breather, then I see no problem with the move. A move is a move - whether it is to your place, a local AL or one near you, it will not be easy, but again if she has the NEED for more skilled care then it will have to be done. Another option I think someone mentioned is YOU make the move. If you are still working, well that presents a problem for you, but also for taking on mom as you would not be there for many hours all week long. If you are not working, perhaps you could lease out your place and move in with or closer to mom to help out with her care.

Again to Dontask:

As for authorities watching for elder abuse because you move someone? WHAT??? WHERE do you get your information from? We moved our mom across state line roughly 40 miles or so to a place closer to two of us. It has been almost 9 months now. No authorities have been knocking at my door, or calling, or mailing me. HOW would they even know? Yes, if she's on Medicaid and there is a move it would be known, but do you think these people are sitting around just waiting for you to move someone? They are overwhelmed as it is with many issues, and often times the bigger problem is that they DO NOT see abuse, whether it is elders, children or domestic abuse victims!!!

Final thought - if I made all my decisions in life based on whether people are watching me or disapproving, I would get nowhere. Base decisions on doing what is RIGHT for everyone involved!!!

Lots of folks have advice one way or the other. My opinion is that once a person is in a skilled facility (a.k.a. long term care or nursing home) it doesn't matter so much where they are in the country. Few friends visit, and what they really need is an advocate. It's really hard to do this from far away. Assuming you are wiling to be that advocate, my advice is to find the best place you can afford and move her. It isn't going to get easier to move her the longer you wait.

I moved my Dad from Virginia to Kansas to be in a long term care community near me, and he has benefitted from having me nearby as his advocate.

Wow such great answers. I moved my mom in with me from another state and I question whether I did it too soon. Financially I didn't as my brother was committing financial elder abuse, but physically I wish I would have set her up in an assisted living near her sister. She doesn't have her own bedroom so she is in my dining room. We've lost a lot of our privacy. I do not have the kind of relationship I thought I would have. A loving daughter has turned to be the person who has taken over. My brother has grown wings. My sister is dead and she is a saint. So it's just my husband, myself and daughter who care for mom. She is very easy to physically take care of. It is the mental part that is hard. Read and reread all these posts. Go stay with your sister and she what things are really like. Your sister is probably doing a good job and she is unappreciated. If you find this true than support your sister in anyway you can. If not you'd better know what a long haul it is.

Thank you for all the responses!
I spoke with my brother this weekend and we both agree that she would be better and happier in a home with memory care. Also close to me. Unfortunately, my sister is currently the caregiver her motivations are mostly financial. Although she gets a very nice monthly payment to take care of mom. But she needs to have fresh square meals, frequent bath's, socializing and cognitive therapy and that is not happening. She basically just lays in bed and I know she is unhappy. She is in a very dysfunctional environment. She deserves so much more. So, I am looking at the facilities near me. At this current moment she probably could take the airplane of course with one of us with her. Our plan would be this coming Spring.

Wow Delawaregirl!! I am so sorry for your loss and all that you are Going through. How long ago did this happen? I would contact APS in their home state and where they passed away. Also contact both area Sheriff's Departments. Let them know a subpeona has been issued. Is there a warrant for your sister's arrest?? Does she have a criminal history? Maybe call her probation officer or parole officer, and let them know. It there is a subpeona charges have probably been filed. Is your sister in hiding? Many unanswered questions. Talk more with the Detectives and get on the phone with APS. Again, so sorry for your loss...

lealonnie1,

Two person lifts are allowed in ALFs in Minnesota. A resident doesn't have to go to a nursing home for that assistance. Just be prepared for more $$$ per month. Each state is different as I'm learning.

My mother in law who has stage 6b alzheimer's disease was in an Assisted Living Facility in Pennsylvania. My husband and I live in Arizona. We didn't feel that the ALF was treating her as well as possible. She always smelled of urine so we know she wasn't getting the proper care. We brought her to live with us. It is difficult to say the least especially for me because she doesn't know who I am so I get dirty looks constantly. She has to be reminded all the time to wash her hands. She says she did but we know she didn't. So we keep hand sanitizer all around as well as Lysol. She needs constant attention. You life will never be the same. You can never leave them alone. You will feel trapped at times. This is a huge step but we felt that we had to do it for my MIL's sake. Our life is on hold. I just want you to be prepared.

I shared earlier on this thread - Now when I look at all of these comments, it comes to mind that I wish that our siblings who are not caring for Mom or Dad (nor would they ever) could read all of these comments. They have NO IDEA what a difficult job it is to care for a parent who is in this category of age and physical and mental illness. None whatsoever. My two sisters think it must be "fun" because Mother was a fun person to be around when she was younger and independent. They are in denial about her mental illness - I assume because they are afraid they are getting it (ALZ). For sure there is a "common thread" in all of these comments. They should be bound into a book and given to the siblings who do not want to lift a finger for their parent. Yes, "their" parent. BUT...as I say (my mother, wheelchair, severe dementia, Blind, 96) ....the hardship would be greater on her, than me, if she had no one taking care of her. She is now in MemoryCare but I still continue to take care of her. She will likely live to 100 so my responsibility (my retirement) has a long way to go. I've been doing it now for 30 years while working full-time and taking care of my own household.

To momhelper123 - wow, 30 years... hopefully the first part of that wasn't quite as bad :-O I have read plenty of others' comments about siblings thinking how easy it is - I was doing my research for a while (already knew I would not be doing this... physical would not be possible as she outweighs me and I have to be careful what I do with lower back as it is, but she was not a "fun" mom!) When we three (2 brothers) checked the first place and were told 8k, their initial reaction and thoughts were Gee for that amount of money I'll take her in! Surrrre boys, just be aware of what you are signing up for!!! Clueless. One is still working - whacha gonna do with her all day? The other is in NC, 1 1/2 days away and limited patience... same question... she was already self-isolating - she needs to interact with people and get some activity.

Anyway, kudos to you! Who cares what they say or think? At the end of the day YOU are the one you must sleep with! :-D

Thanks Disgustedtoo - for the thumbs up. No, it wasn't as hard for the whole 30 years but....30 years ago my mother's husband died leaving her with a whole big world to handle herself - which she did and I am proud of her. (Her husband's death jolted her into severe paranoia.) I helped her with their home business (while working my own fulltime job managing several medical offices in LA) and she took over her deceased husband's sales routes at age 67. I am filled with admiration. She was not always grateful for my care and oversight (ouch! did not feel good)- but I boogied on anyway. When I retired from medical, my husband and I moved to Orange County and bought a condo right next door to her. For years that worked pretty well, and her life was full having us next door, but the dementia/delusions got so bad that she needed Assisted Living (a mile from me) and now MemoryCare because she is so disabled. But oddly enough, as the dementia grasped more of her brain, she became sweeter. It is a different journey for all of us. The important thing is to "take the journey" and then with the help of sites like this one, glean information to help formulate a workable plan. A year ago I had two-level fusion back surgery, so after the surgery I finally gave up trying to transfer her in and out of my car for MD appts- Thankfully this memorycare (funded by sale of her condo) has health oversight, and it is heavenly for me. I am so grateful for this memorycare that I found by using the wonderful services of a Senior Living Advisor (free by the way), and when the $$ dries up, then go to a Financial Senior advisor - not free but relatively "free" - and he will guide you through the MediCal process. (I just did this for when the money dries up). I worked in the medical world, and yet there is really Nothing that prepares you for an elderly parent, with limited funds, with mental and physical disabilities. I've faced tough situations in my life, but this is the toughest by far. Yes, when my mom is gone, I will rest peacefully. That will be my reward. I'm on my way to Memorycare right now - with my Bluetooth music and Amazon Mother Playlist in tow, with materials to make birthday cards for my sister and niece, with burritos (that she can hold....being blind that is important) and maybe with a very very light :) margarita!) This is my retirement but...who needs my help more than she does? KUDOS to everybody on this site - you guys rock because you guys care enough to seek answers!

Hello my name isTerry, I drove from California to Iowa, to get my dad out of a care home. Brought him back to California , drive was very hard on him , but when I got him back to his other home in California, I became his care provider. That was 4months ago , wanted to let you know in my experience this was the right thing to do , I stopped working to take care of him ,. He is much happier with me than people he does not love , good luck god bless

Not a good idea for an elder at all.
Poor person will be thrown into a tizzy.

My mom moved in with me 10 years ago when I noticed she could no longer safely drive due to her eye sight. She has become very forgetful and has diebetas. She uses her walker and doesn't mind using the wheel chair when we go out to eat. Yes your life will change in ways you never thought about. I'm divorced and my kids are grown but live in the same state as I do. My mom is very easy going and trust and knows me well. I have found living with her has made my life challenging in some ways but such a blessing in many ways. I suggest spending some time with her before you make a discussion on having her move in with you. Once you know you can overcome her challenges in mobility and lifestyle, you will be able to make the best decision for where or who she should live with. Never an easy decision to make but with love and understanding I think you will make the best decision for all concerned.

I moved my aunt from Florida to MA after her husband died, into an assisted living memory care unit. I have watched as other people have transitioned in. I knew that I would be unable to care for her 24/7, my home is not set up for someone who is a fall risk (the walker and wheelchair indicate to me your mom is likely a fall risk). Before you even think of moving her, I would advise both going to give your siblings a break so you can see how difficult it is to watch over and keep an elderly person with dementia safe, AND I would go to local assisted living and nursing facilities - not just the tour, but go in and "visit" - during lunch, in the evenings, at various times and keep your eyes and ears open. How is the staff with the patients? Are there enough activities to keep them occupied? Is there a dedicated activity staff, or is it just one more role the overworked CNAs have to take on? Do the patients seem happy and are there interactions between patients, staff, and others? Does the place "smell"? (Make no excuses - I have been in plenty that have no odors at all, and others that are like sitting in a dirty cat litter box). Do the patients all look like overmedicated zombies, or are they dressed, active, and lively? What are your mother's medication needs - some places charge extra for administering medicines, and some places the staff is not allowed to administer meds - the patient has to be able to take the pills and put them in their mouths and do their inhalers without assistance. Don't go by price - the place I finally settled on was less then half of the first place, and about half of the other places, but they had dedicated staff and activities from morning until night (movies, entertainers, quiz shows and bingo, etc.) with fun prizes like kooky socks that the patients love. Why am I focussing on all this? Because once you have installed your mom in your home, you will not have the luxury of going around and checking out places, their costs and their amenities. You will not be able to go shopping unless you find someone to care for her or take her with you. And if she is a "wanderer", be prepared to have a good photo of her and have the police issue all points bulletins. If she ever drove a car, she may go through a phase where she thinks she still can - so you will need to hide the keys to prevent her from trying. Many with dementia will go around opening doors and drawers and "shopping" - taking things from one place and putting them in another. It is disconcerting in the middle of the night to have someone rattling your doorknob or coming in and rifling through your closets and drawers. And be prepared to answer the same questions 100 times or more a day, without getting irritated or saying you just answered it - that will upset her and your tone will bring her down for hours. Be prepared to have her tell others how mean you are, how you steal from her, and other fanciful stories. Cover everything with plastic - it took me months of bringing my large couch cushions to the laundromat and trying every disinfectant and scent remover on the market to get the smell of urine out of them - especially if she has a UTI. Be prepared also, especially if she has a UTI, that when you try to stop her from doing something to harm herself (going up and down stairs, drinking cleaning liquids, eating toothpaste) that the sweetest, frailest person can become very angry and strike out with superhuman strength. My friend's mother is over a 100 years old, about 4' tall, the tiniest petite little thing, but it took 3 orderlies to stop her from attacking someone who triggered that anger. Sometimes, loving someone means knowing when your good intentions may not be the best thing for them. I adore my aunt and spend 8-10 hours in the emergency room/hospital with her several times a month, to make sure she isn't ripping out her IV or jumping out of bed and pulling on electrical cords or fiddling with equipment. I don't leave until she is settled in her room and sleeping and that everyone there is aware that this sweet, smiling, joke cracking lady is STRONG and to avoid her anger triggers or be prepared to hear threats and language that would embarrass a sailor. Also, check each of those places - many have respite care as well as allowing potential new patients to spend a few weeks there (at a cost) to give you a break, and to see how they fare in that environment. The first week they are usually confused, waiting for their families to come get them. By the 3rd week, they are interacting with others and enjoying their stay, getting used to the routines. Good luck, and just make sure you have a fallback plan.

Colberry, I'm glad you have a plan in place to move mom to GA in the spring! Flying will be the right thing to do, too, and I'd suggest the earlier in the morning, the better. People with memory issues tend to do better in the am, and when she gets to GA, she will be exhausted and ready for bed.

In GA, there are 3 levels of care. There are personal care homes, which are not quite Assisted Living, and take in a lot of people who previously would have been institutionalized: adults who can't take care of themselves because of developmental disabilities. They also take elders. There are Memory Care homes, which can be Assisted Living or of Personal Care and they can also house the developmentally disabled.  Once you reach the need for Skilled Nursing Homes, the person is not wandering and is less likely to need a memory care lockdown.

We have been delighted with the care mthr has had in a small, modern memory care unit in an Assisted Living type residence. When she moved here, she went straight to them for her home, and it was seamless for us. We were able to take her to all her medical appointments easily, and they always had her ready for us on time, a feat she could never accomplish herself.

IggyZiggy - Well written (this coming from a veteran at taking care of a mom with so many challenges for so many decades .. 3 to be exact). Your comment about how HEAVY a tiny person can be is SPOT ON!! It takes 2 people now - almost 3 to transfer her from wheelchair to loveseat. And it is still a painful process with lots of yelling. And she had an optical nerve stroke at age 95 and is now blind to add to the sadness and the problems. This after taking her to the eye doctor (NOT EASY) every 4 months, or MORE OFTEN. Yes, it is a ton of work. Many of us (71) do not have the healthy backs for all that that lifting - (and moving from facility to facility) - I had 2 levels of spine fusion a year ago, and finally have just given up on lifting her. My own spinal column (with hardware) counts too, I finally decided.