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First of all I'm so grateful to have found this site. Now...where to start. Mom is 83 and her mind is failing fast. Repeats herself constantly, thinks the bank, the pharmacy, her doctor etc are lying. She's needed hip replacement for at least 10 years, can hardly walk and is in horrible pain. She has not done anything to secure her future. Her home is in disrepair, with a mortgage, although she would probably net $400,000 after sale. She has no other assets other than her SS which I believe is only ~400/mo. I live 500 miles away. I have never been her "favorite" kid, only the responsible kid so this is falling on me. I have an adult disabled child so live on a shoestring while caring for her. I recently had surgery for lung cancer and am trying to heal physically and emotionally. I'm not even cleared for travel yet. I'm simply overwhelmed and do not want to compromise my health or minimal finances but I do love my mom and want to help her if I can. Any ideas where to start?

I agree with you. For the time being, let your step mom have her way and let your dad move into an AL near her. But I would encourage you to make sure your Dad has a mobile phone so you can call and monitor how he is doing. Keep notes and evaluate if his living situation is working for him. If his wife doesn’t make an effort to visit him, then he may decline quickly.
Your situation reminds me of my story with my Dad. In January 2017, I moved my 89-year-old Dad- who is cognitively impaired, incontinent, legally blind, and can only walk short distances with his walker - from GA to CA. His living situation no longer was working well for him. He declined, had a mild heart attack and ended up in a hospital, followed by rehab. I went to GA to emotionally support him and try to discern where he should be. He really wanted to move back to CA. My husband and I finding an AL facility near us in CA that would meet his physical needs.
The day of the flight was a very long challenging day. We picked him up from the Rehab at 9:30am and got to the CA AL at 9pm - but he survived (so did we😉😊).
Over the past 20 months, my Dad has improved so much emotionally and physically. What I have discovered over the months is that I am a very significant key to my dad’s mental health. I cannot care for his bodily needs, but I can trigger those precious memories that are in his brain.
Dad’s AL facility is only 15 minutes away, I can visit him 2-4 times a week. The frequent contacts enable me to observe and reflect on his words and various emotional, physical states. They also enable my Dad to develop trust in me, that I can discern what he needs and engage the resources available to meet his needs. On Sundays I pick him up and take him to church with us, where he can watch the children play together, be greeted by name, be stimulated by a God’s word, and during communion remember that Jesus suffered and died for the love of his soul. During the week there are doctor appointments and visits in Starbucks, where he sips his coffee, watch the young students interact with each other, and reminisces with me.  
As his only son, you share significant history with your Dad. You have an opportunity to slowly develop a relationship with your Dad. As he comes out of denial about the loss of his physical freedom, if you are in his life, he may become more humble and thankful for the important role you play in his happiness. I hope that you will explore the option of having your Dad living near you and your family in an AL facility that can meet his needs.
In the next 3-6 months, I encourage you to watch and see what happens with your Dad and step-mother. Keep asking 1) is the best for the best living situation for your him, and 2) what kind of time and energy can you realistically give your Dad given the season of life that you are in, if he were to live closer to you.
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Medicare and Medicaid do not pay for room & board (non medical services). The natural course of aging, is not considered to be a medical issue. Putting Mom in a Nursing Home will not work, if Mom is unable or unwilling, to participate in rehabilitation. Rehabilitation consists of Physical Therapy and Occupational Therapy. The aging population has outgrown the availability of "Medicaid Waiver Beds." The waiting lists, are years long. The same is true for the Veterans Administration. Medicare will pay 100% of the rehabilitation costs, (up to a specified time), if your Mom is eligible. If she stays in the Nursing Home and does not qualify for rehabilitation, she most likely will have a copay, of $5000 per month. Without a qualifying medical care need (ie: infected bedsore), Mom will be promptly discharged. Assisted Living is an option, for families that are unable to care for their loved ones, in their homes. Memory Care (in California), starts at $5000/mo. For those who cannot afford $5000/mo, in home care may be an only option. The average cost of a 24/7 non medical caregiver (in California), runs about $10-$15 per hour. In other other words, it's about $7200/mo, to pay the $10/hr, under the table. Another option, is to offer free room and board, to a live in caregiver. Do not let anyone talk you into "spending down" Mom's assets, to qualify for Medi-Cal (Medicaid). As I have figured out the hard way, those spent down assets, are needed to provide: room and board, a caregiver, personal grooming and clothing, incontinence care, related mobility equipment, medications, transportation to appointments, ...
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Is there a Nursing Home near you? By your letter it sounds that you need to take care of yourself first or you won't be able to help your Mom. I would look into a place for your Mom then if you are well enough you could make other arrangements. Taking care of a loved one is not is an easy task. It is a 24/7 care. I took care of my Mom until I could no long do it and she did not have dementia, I had Home Health come in to help and meals on wheels.Ask her Dr. maybe he can direct you on what is best. It is always a hard decision when it comes to our love ones but you need to do what is best for you and that is not being selfish...Best of Luck.
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lisajean, I believe a lot of responders are looking farther down the road than you are right now - offering advice on how to proceed as if your mother is unable to make her own decisions. Although you are concerned about your mother's "mind is failing fast" it doesn't appear you have any diagnosis for her impairment much less any doctor's statement that she is impaired to the point where she is incompetent. There are several treatable diagnosises for your mother's quick decline that would restore her mental function - one of them being geriatric diabetes. A woman that has refused hip replacement for 10 years is a stubborn woman and you need that woman's cooperation to take the next steps quickly and easily. My experience is that when the elderly first exhibit memory symptoms they are often still legally competent. Unless her house shows she is clearly impaired, APS will not be able to do much but their appearance may encourage your mother to become more guarded in her interactions.

Please take an attitude of working _with_ your mother to _help_ her instead of one where you are taking control and ignoring her wishes. You may eventually need to place her in AL or MC and it will be so much easier if she accepts the need to make that move.

First, I suggest you tell Mom you are concerned and would like her to see her doctor. Find out the doctor's name and send the doctor a letter listing of your concerns (he won't be able to talk to you at this point but he can listen). After Mom has visited the doctor, ask her to sign a HIPPA so you can talk with the doctor about what he thinks. The PCP may schedule appointments with a neurologist and/or a geriatric psychiatrist. You will need a HIPPA release for each doctor. At that point, you will have the necessary information to plan next steps.

If your mother is still competent, talk to her about designating DPOA and HCPOA. Make sure these documents name a primary and secondary POAs and authorize POAs nominating successors. Only after you have these documents in hand, start talking about in home help or assisted living. One step at a time and don't rush your fences.

If she's not competent, you will have the documentation you need to proceed with a guardianship hearing. I suggest picking someone you can work with and trust to be a co-guardian with you so no one has to go through the guardianship process again. My mother and younger brother became co-administrators of my grandmother's estate with the younger brother being included because of my mother's age. Life is uncertain and the younger brother died before the estate could be settled while 14 years later Mom is still kicking.

After Mom is deemed incompetent and someone has decision making authority for Mom, make the best decisions you can for everyone - Mom, yourself, and your family. Previous posters had lots of great advice for this stage.
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Cbukkit Sep 19, 2018
Excellent!
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Get her Medicaid and then in home services through them. When time comes they will pay for a skilled nursing facility. They will take all the money from the sale of her house when she passes though. Does she have a WILL or TRUST? How are her bills handled
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I would contact an elder law attorney first. Legal Aid has an Elder Access Telephone number and can give you advice (free in my state) on obtaining POA. Second, contact a real estate agent to appraise her house and put it on the market. Third, look ay Memory care and LTC's in her or your area. They all have websites to do virtual tours. For LTC's you can google Nursing Home Compare to review their star ratings, survey results, complaints etc.. Once the house is sold you can use the proceeds to place her in the facility you choose. You say that your siblings are unable to help, but would you happen to have any cousins, trusted friends etc. in her area to help with some of the legwork?
I wish you luck with your mom. Please take care of yourself and I wish you a speedy recovery! Good luck and please let us know how things are going.
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Dear LisaJean,

caregiving is a marathon, not a sprint

it’s a team sport, not a solo event

As much as you love your mom and want to do the right thing, I would respectfully suggest that you place your needs and the needs of your special child first.

You may feel that there is practically nothing left at the end of the day when those needs are met - no time, no money, no energy.

That feeling would be the realization that while our love may be infinite, we are all finite. When we give, or commit more than we have, we accrue deficits in things that are vital to our survival and happiness - sleep, health, good humor, positive attitude, financial safety net, friends, goodwill, time...

Be efficient. Be creative. Be compassionate in what you chose to do to assist your mom. But, I don’t think it’s reasonable to expect that you can manage all of her care needs or repair her life. You have so many very important things on your plate already - healing your body, caring for your child, holding together your finances.

Get as much government assistance rolling for your mom as possible - Medicaid, elder services, legal aid, the local agency on aging (adult protective services if no other help can be found). Find a social worker or case manager to do the heavy lifting on mom’s behalf.

I hope you aren’t offended by what I’ve said. It’s spoken from the heart (a very exhausted one).

Wishing you all the best.
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Beckyhunt9090 Sep 19, 2018
Beautiful response Gardens.
Although I'm not LisaJean I found your advice very helpful. I'm two years into caregiving for my parents who live 20 miles away. I'm very blessed to have a supportive and patient husband.
Your insight reminds me that there will come a time when my parents' needs will require expertise not just my love.
I am extremely grateful for the time I do have caring for my parents and will cherish the memories we are making together. I know I can't provide everything they will need in the future.
Thank you for your caring, thoughtful insight.
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If your mother's house would net $400K, that may be enough to cover her care for the rest of her life depending upon costs of care in her area. In any case you would need to use that money before Medicaid would be a consideration.
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Since there are no other family members able to help, and since you are financially and health wise unable to take over your Mother’s situation, it would be best for you to call her local Area on Aging office and let them make her a ward of the state. They will handle everything that’s needed. But I would call her local PD again for a welfare check, so there is a record of their findings to get the ball rolling.
Take care of yourself and your daughter. That has to be your first priority, no matter what else happens. Stay strong.
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I have just put my wife into a home after three years as a caregiver. In the three years I lost a total of 34 lbs. she has Lewy Body Dementia and the last year she went down fast. My point is that concidering you are not in the best of health it is probably best to find a way to get her in a home. I love my wife and to put her there was horrible but my health was at risk. I’ll pray you’ll find the strength to carry through.
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lisajean Sep 18, 2018
I'm so sorry for your pain. Thank you for the gentle reminder to put oneself first when health is at stake.
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Oh do you have an overflowing plate.
I would start at her local city hall or source of city services and ask if they have an office on aging and explain as you have above about your circumstances that prevent traveling at this point and your limited income yourself.  You cannot afford a geriatric case manager which would be a potential source of help from the distance it seems.  You need legal guidance ASAP.  Getting older has become very complicated.  Be advised that when you connect with legal help, you are going to have to list all assets and other details which you may not have access to being at a distance.  They will also no doubt suggest a cognitive assessment.  It may take a while to get an appointment so I would poke around via the phone or computer, maybe look at the nearest Alzheimer's Assn website, see what professionals serve on their board, and try to get a feel for who they suggest.  The apt could be months out.  Some hospice programs will deal with dementia patients now; they may have a link/know of someone.  With her beliefs at the moment fixing the hip will not go well at this time, though something should be able to be done to increase her comfort and possibly a wheelchair?  Medication could complicate things as well as help, but a hospitalization of someone with dementia like symptoms could bring out even more.  Take it one step at a time, make a list, and don't beat yourself up because there are only 24 hours in a day.
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1 - EDUCATE YOURSELF by finding her & your legal position
2 - EDUCATE YOURSELF by finding out who has POA & go forth from there
3 - EDUCATE YOURSELF by finding out her financial position

I can't say it enough - you can't make an informed choice without the straight facts concerning where you stand & make sure they are not guesses but her personal pertainent issues

It seems that there are siblings & what will they be doing to help or hinder - you have quite a bit on your plate so make sure that rest of family are not doing the same things you are which is a waste of time for all - TIME FOR A FAMILY MEETING even if it is a conference call or skype - your don't have to do everything yourself - delegate to the one who can do it best so may be that bro does paerwork, taxes etc & someone does daily issues

Once you have a plan then if possible everyone keep the rest of family in loop - after I take mom for an app't I write it all up in an email with names, contact info etc to my sister & COPY MYSELF - I have folders on computer for her financial, medical & miscellaneous so if I need to refer to anything I look there [subject titles are very important with this] - if she needs to step in if I am away she has the info at hand [we're 2 hour drive away from each other]

Your mom most likely will have to move & probably sooner than later - make it a 1 time move & she should be near whoever has the responsibility for her because doing things from 500 miles away won't work -

Then sell that house & don't kill yourself over it - clean out & search for personal items & things of family value otherwise sell as is as a fixer upper then be done with it - look under the shelf paper for items hidden away - put the money where it will generate an income for her but make sure she can't touch it because she could give it all away in a whim

Seek professional advice for her medical condition, selling house, her legal issues etc - quite often you can get this from agencies that have little or no cost & try to get it from someone who is not trying to sell you something to line their own pockets

Good luck & I hope your situation improves as well as your mom's
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youtube.com/user/teepasnow If I were you , I'd watch this woman's work that teaches the best way to work with those who have memory issues . I know you will find there are ways to work with a caretaker and/or yourself to help her . I understand your Mom needs extensive care and being her caretaker if you cannot take care of yourself is simply not going to work most likely . If you really want to help your Mom and yourself , it is a good idea to let Social Services handle her . With her house in disrepair it may be worth only the land value but certainly you have expressed you really need to focus on your life and your adult disabled living with you . If your Mom's income is only $400 a month , how has she managed to even pay the taxes ,etc., for the home ? You can look online ( her courthouse ) to see if taxes are owed and /or liens are filed from any bills owed in addition to the mortgage owed . Believing there is anything that heirs could get may be a mistake ( nice if true but who knows ) .
Right reasons to care for your Mom are that you are in good health , you chose this and you know you have the expertise to do it . You mention she has had pain for years and that alone is enough to make her terribly depressed and sick . My heart goes out to her and she deserves good care , now and to let go of all that is too much . It won't be easy but it will be right . The website I mentioned above can give you real insight into the time and patience it takes for someone with Memory care issues not to mention pain that should have had help years ago . Call Social Services in her area today . She has been neglected long enough . Imagine trying to cope with serious pain and a mind that " tricks " you . Not right ,not fair . Love means it is ok to let go and make that call . Compromising your financial situation is not what you can afford to do at this point , you are correct . Be at peace , make the call and be clear about how serious the situation is with her alone .
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lisajean Sep 18, 2018
Thank you. Love is the hardest thing we will ever have to do as human beings. I have Teepa's videos in my playlist for tomorrow.
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talk to her doctor and rule out underlying infection like UTI. Whatever the case, you will have to talk to her doctor about her condition. Get her on Medicaid, start planning a nursing home. It only gets worse. Unless you are prepared to change her diapers including clean her feces. and it is very back breaking work. End stages they will not help you to the least, but resist.
See an eldercare attorney, establish Power of Attorney (if not done already), and go from there. but plan on nursing home. If she is already on Medicaid no worries. Nursing home placement is merely a doctor's order..done deal.
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I can only add have her checked for UTI. Just in case that's making things worse.
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First and foremost you want to get living will or trust asap, get DPOA for finances and Medical. If she is not too paranoid..ask her if you can put your name on her checking account. You want to get these legal items taking care of first.
If she does not have a geriatric doctor. Get her one. They understand the needs of the geriatric population.
If she has not been started on Namenda and Aricept..discuss with her primary doctor.
She is only receiving $400.00 per month. Something is wrong, especially she was married before. Even if she was not married before..she should be receiving at least $850.00 per month. You might want to take her in to the social security office.
Feel free to contact me for additional resources and information.
Hope this helps.
Angela
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lucyinthesky Sep 18, 2018
You are a gem to offer one on one personalized help! But could you tell me a bit more about yourself? May I call you too?

I was actually wondering about putting our name on a LO's account. I did this with my Mother but then was advised against it as her funds could be construed as mine somehow implicating me in any possible outstanding bills or worse responsible for a NH stay.

Thanks! Lucy
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Hi LisaJean. First, wishing you well on your own journey to restored health, and I taking care of your daughter. While I am not an expert by any means, I would volunteer advice that you need to be very careful about obpver extending yourself, even with the best intentions.... I would do what you can, but..... you have got to take care of yourself so that you can see to your disabled daughters needs.... ypthat is your main priority.
Best of luck, keep us posted
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lisajean Sep 18, 2018
Thank you. It is easy to guilt myself into action. I have a lifetime of doing this with my disabled child (not intentionally of course just always second guessing if I could have done more or better). However over the past few years I've experienced what ignoring ones own needs does to a person and I'm determined to put my own oxygen mask on first. I wont be here for anyone if I drop dead from cancer or a heart attack!
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Lisajean, The "system" has not had time to catch up with the reality of people living longer than nature intended and often not in full control of their bodies or their faculties.
It will take the tsunami that's coming to maybe provoke changes in the disconnected, dysfunctional non-system of human welfare we have now.

I can't offer any help, except to say that your mom, when she thinks banks pharmacies, doctors are taking advantage of her, no doubt has past experience as a guide . The older we get, especially women, do get cheated by opportunists and thieves. It would be natural, as her mind becomes frazzled, to feel that everybody is doing it. It's hard, but try not to argue over it and get yourself worked up.

You are apparently in no condition to deal with this major issue. I agree with cwillie that you need that geriatric care manager. And to put it to your siblings that they need to step in and share the all the load, including financially. Better that they take it over altogether. You can't be all things to all people. Take care of yourself and your child first. Your mother had her life and made her choices to get where she is. You have your and your child's life to think of and need to keep that as a top priority.

In the end, we are all dead, and she will feel no pain or resentment against you when that happens. And don't let siblings "guilt you" for not doing what they are unwilling to do.
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janeinspain Sep 18, 2018
This is a very insightful response. Have you done any thinking or writing about what a functional, connected system of human welfare would look like? And how to best address the disconnect between people living longer than nature intended and a society that seems conditioned to accept and even demand extremely costly measures and living conditions regardless of real quality of life? I think the “tsunami” you describe is here already!

Thanks for any info you have or good reading on the topic you can suggest.

(and good luck lisajean!)

Jane
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Thank you all for taking the time to thoughtfully answer my query. You answers are straight forward and I appreciate that. Siblings are out of the picture. One is head injured and one mentally ill. Oldest died several years ago from alcoholism. Moms long term partner went into memory care ~5 years ago. No veteran benefits. No POA. No money for private pay or anything really. Moms memory issues just happened so fast. I thought it was pain or stress or medications but now I believe it is more. I've called her local PD and APD and asked them to do welfare checks but as far as I know it never happened. I'll call the agency on aging next week. This is all just so incredibly heartbreaking.
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RacklaMSW Sep 18, 2018
Unfortunately..if you call APS Adult Protective Services..you may not get much of a response. Their hands are tied especially if her basic needs are met. As a professional..I had to call the police department to do a welfare check to get immediate response.

And..yes your focus does need to be on your health and your disabled child but you are going to worry if your mothers needs are not taken care of. Just remember to also take care of yourself.

Angela
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Sounds like you have 1 major decision to make .
What Memory Care facility will you choose for her.
Do you have the authority to sell her house?
Are you POA or who is POA for Finances and medical decisions?
Most Memory Care facilities, if you find one that accepts Medicaid will want you to private pay for at least 1 year. So keep that in mind as you look around.
Your next step might be best to contact a lawyer that is well versed in Elder Care law. They will be able to help you navigate the legalities.

Another question..is your Mom a Veteran? if so she may qualify for other sources of help. If your Dad was a veteran again she may or may not qualify for other help.
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RacklaMSW Sep 18, 2018
In CA Medicaid does not pay for memory care facilities. Medicaid will pay for skilled Nursing Facilities. Usually and most memory care units must be paid for out of pocket and usually begin at $4,500.00 per month and more.
Remember..if she sells her home and she has Medicaid..this could cause her to exceed the financial guidelines and not qualify for Medicaid.

Angela
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I really think you are not in a position to take this on, remember people with no one at all still get taken care of even if it means they become a ward of the state. There are geriatric care managers who can do some of the leg work (for a fee of course), if you contact her local agency on aging they may be able to do a needs assessment for her and point you in the right direction. Good luck.
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RacklaMSW Sep 18, 2018
I disagree. If you have someone guiding you..you are more than capable. Call me. I can guide you for free.

Angela
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It sounds as though you have so much on your plate that love is almost all you have to spare! If there is no other source of help, your mother needs to find care that has options to proceed to nursing home or memory care. You just can’t do it. It would normally be best to tour all her available local options, and then to take your mother to visit the best couple. However you are a long way away to do this. Perhaps a sibling would be willing to take on the tour part, if you write to them with the conclusion you come to. A clear and time limited task without decision making responsibilities is sometimes more workable to ask for. But it would still be tactful to leave it open for more involvement, if any of them step up to the place. Think about how to broach the subject with your mother, either yourself or through the family. It is never an easy thing to do, and try if you can to check that you all feel the same way - you don't want it all to be blamed on you.

If this stage works and you find a placement, you will then face the need to deal with your mother’s house, because she will need to spend down her funds to access Medicare. Her current income won’t pay for care, and she won’t be eligible for Medicare with a big asset.

It would be a good idea to get all the paperwork in order. A Power of Attorney to deal with finances etc (joint and both to sign might be a good idea if there some family conflict), Advanced Care Directive etc. These need to be in place now when there is no question about her not having the mental capacity to sign the documents.

Think it through and make a decision about what you think is the best course of action. Then come back again for help when there are clearer questions to ask. Good luck in tackling a problem which must seem overwhelming right now, and best wishes.
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jacobsonbob Sep 18, 2018
I believe you meant MediCAID rather than MediCARE.
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