My Mom with dementia lives in an independent senior living and we help her daily. She has limited money available and assisted living is so expensive. She stays clean, cleans her apartment and fixes food for herself. I know the move would be horrible as she would not know where she is and would have a terrible time adjusting. We both work so cant move her in with us. How do I make this difficult decision? If she goes to assisted living she will probably be broke within two years. She is 87 years old and we know her dementia is getting worse.

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If she is ill enough that she wouldn't know where she is if she moves then it's time for her to have more help. Adjusting to assisted living may be a problem - it may even set her health back, but she can't live alone much longer (from what you've indicated).

As far as money is concerned, once she has spent down her money she'll qualify for Medicaid. You may want to look for an assisted living facility that accepts Medicaid (not all do) or consider a nursing home with a memory unit. It's never easy - that we all know. Please keep in touch as you go through this process.
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I know for my uncle he did well when he was still aware and could remember a bit. I found it easier then when my aunt went when her dementia was at it worst. She was confused and mad all the time, refused to eat or take her meds. When it came to my uncle he was there before the dementia was bad and it already felt like home and he follow his daily activities. good lucky to you. Don't worry about the money there is medicaid but start looking now so your not in a rush and just pick any old place. Look for the assisted living with long term memory care and close to your home and other family members. Go in the morning smell and see is they over drug their clients. get to know the staff at the place that you like see if they have senior daycare so she can get use to the facility, staff members and other clients. I hope I helped you a little you have a long road a head of you.
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If she has dementia, I would also look for an AL that does have memory or dementia unit as well. That way, once she is there, it's not as traumatic if she must move into memory care or the dementia unit. Many now have both under the same roof now. Also, here in Arizona, there are many small group homes that are set up for AL or Memory Care too....and that might be less expensive and more like still living in a family situation. As to when it's time, I think when she is not safe alone anymore. does she still cook; use the stove? Does she know how to keep her door locked; does she miss appointments or let strangers in the house; does she still drive? When there are consistent problems cropping up with these types of things, it's time for either a care taker in the home, or AL/Memory Care. When my Dad had to leave, first of all, he was not getting any assistance from my Mom....though she was there. He was unable to pay bills; started burning food on the stove, couldn't keep track of his meds, became agitated ( I think because he knew he was not in control) then started fighting all the time with Mom and then drinking too much, which made him more aggressive/angry. He was up and all over the house during the night....doing things like putting ice cream in the cupboard instead of back in the freezer....creating messes, keeping mom from getting her sleep....things like that. At the end, Mom had fractured her back and was walking with a walker, but he was not being safe with her. She fell one evening and he called me to ask what he should do and who he should call, before he even tried to get her up! I live 5 hours away. I knew he no longer had judgement and she was not able to take control of the situation. One night, in anger, he threw a half full big liquor bottle at her. Our daughter was there to help and she witnessed this. We already had some caregivers coming part time, but he was still agitated like that, so when that last unsafe thing happened I called the police to do a welfare check. He ended up being removed for a 72 hour eval and the judge said he was not safe to return home with my mom in her condition. That is when he was placed. With my Mom now, and her dementia, at home alone....for the past 2 years....she is getting to that point. She is hoarding food, on the edge of being OK driving now, missing md app'ts and getting days mixed up even when it's on her calendar and she has had reminders....not able to think of people's proper names, or names to identify things. There have been several scamming attempts in the last six months that were close calls....and one in home robbery when she let in strangers who said they were from her insurance company. I started keeping a log of when these strange behavioral things happened, and after a couple months, I could see them building and getting more frequent. We are now planning the caregiver and staying home as a short term solution, while we investigate her VA Aid and Attendance and start looking to find an AL/memory care that could take both her and dad, either here by me, or in Phoenix, where our youngest daughter that I do not have to travel to Tucson twice a month...which it's been since last summer, due to issues I have to deal with. I am 70 and I just am feeling it's not OK for me to be driving alone making these 5 hour trips so often myself, and I have a husband at home with Parkinson's, who is OK right now...but who knows where that's going. He needs me too! So part of this planning is to keep me OK!
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Go on tours. Ask about VA Aid and attendance benefits. For example, if she gets $1600 in SS and $1000 a month from VA, she could afford $2700 for AL. Remember, they provide meals, all utilities and some transportation. They do the laundry, provide day trips, and distribute her meds. It's not as expensive as you think.
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you are missing something!!! over looking all options

Knowledge Gap for Families & professionals About Long-Term Care Choices
Most families making decisions about placing their senior relatives in long-term care are not well-informed and need a national awareness campaign about how to address such a choice and advocates to assist them, says a Minnesota doctor and university professor who has penned a new book to help them.
As he establishes in his 13-chapter book “The Good Caregiver: A One-of-a-Kind Compassionate Resource for Anyone Caring for An Aging Loved One,” Dr. Robert L. Kane, professor and chair in Long-Term Care and Aging at the University of Minnesota School of Public Health, says that families deciding to place their elder in a long-term care facility need help in understanding how to select the most suitable category of care and provider and advocates to guide them through the decision.
The book came out March 2011 and is one of many that he’s written over the years on the subject as well as a similarly-themed January 2011 article in the Journal of American Medical Association among his hundreds of writings.
“The Good Caregiver” was inspired in part by a group Kane founded known as Professionals with Personal Experience in Chronic Care (PPECC). In turn, he formed PPECC from a previous book, titled “It Shouldn’t Be This Way: The Failure of Long-Term Care,” he co-wrote with his sister in 2005, both of whom cared for their elderly mother.
The books deal with Kane’s and his family’s lack of preparedness in providing care giving for their mother and placing her in long-term care. The books, especially the latter of the two, are meant to guide and instruct caregivers on every step of the care giving and long-term care decision process.
In “The Good Caregiver,” Kane advises care giving lasts a long time, is expensive, isn’t for everyone, heavily involves families and requires realistic expectations on the part of a senior’s closest family members.
In 2000, the National Center for Assisted Living and the National Investment Center for the Senior Housing and Care Industries (NIC) both called for professional trade associations such as the American Health Care Association (AHCA), Assisted Living Federation of America (ALFA) and the American Senior Housing Association (ASHA) to mount an awareness campaign to inform families about long-term care options after releasing a study that then found a knowledge gap among Baby Boomers considering placement of their elders.
Such a campaign has yet to fully materialize, however.
To begin to fill the void for families, in 2007 Kane worked with a group of long-term care experts to develop a computerized system in the state of Minnesota — considered a pioneering state in terms of policy and laws regulating the industry in the last two decades – to help assess what services were needed to respond to frail older persons’ needs, especially in the area of Activities of Daily Living (ADLs).
The assessment contains the most important questions that families can ask providers to ensure they can serve their elderly relative and comply with the law. To create the assessment, Kane says he and the group asked 200 gerontologists to respond to scenarios created from the assessment elements to recommend the most appropriate long-term care placements for each generated case.
The project was backed by a grant from the Aging and Disability Resource Center Real Choices Systems Choices grant from the U.S. Department of Health and Human Services’ Center for Medicare and Medicaid Services (HHS-CMS) and the Administration on Aging (AoA).
Area Agencies on Aging, a family’s local social worker or a hired private social worker case manager as proper advocates for families. Families can also lean on such resources as the Aging and Disability Resource Center information system.
In the absence of social workers and public awareness, when asked if a family’s doctor or medical specialist could direct families, Kane says a doctor may not serve as an advocate but must be consulted to place a senior patient in a nursing home but in the case of, for example, an assisted living facility or a continuing care retirement community (CCRC).
“Someone needs to work with families,” he says. “What kinds of long-term care facilities are the best at achieving those goals? Doctors would not likely know about that.”
Doctors should help facilitate this decision, primarily by recruiting other experts to assist the families in times of crisis, frustration and confusion. In choosing a long-term care facility for their loved one, families need to consider quality, accessibility, availability, location and amenities; and most doctors would not know about these criteria, he says.
“When people come to me for advice about finding a nursing home, I ask them, ‘Why do you need a nursing home?’” he says. “’Do you need to put [a senior] in an institution? [Have you considered] home care, respite care, adult day care?’”
As he argues in “The Good Caregiver,” in the case of a senior relative who is released from a hospital or medical center after surgery, families may mistake a hospital discharge planner for an advocate. Kane says that realistically the discharge planner cannot serve as a family advocate because his or her decision is based on an institutional requirement to remove a patient from a facility in less than 24 hours.
Kane explains that the only part of senior housing and the continuum of care in general that is truly fully regulated is the nursing home. He describes the continuing care retirement communities and assisted living facilities as “wide open.” He says that, with an assisted living facility, there is no assessment, no medical assessment, no in-depth examination of a senior’s functionality and primarily a word-of-mouth style of referral for families. He says most people are not “well-informed” about this.
Assisted living has developed into a highly variable form of care. “If you go to an assisted living facility, you don’t know what you are getting,” he says. “Amenities vary for people as well as admission, discharge and pricing criteria.”
Still, an American Health Care Association (AHCA)’s National Center for Assisted Living (NCAL) annually publishes its Assisted Living State Regulatory Review. Its 2011 Regulatory Review, available on its website at, summarizes state rules on licensure, definition, disclosure, facility scope of care, third party scope of care, move-in/move-out requirements, resident assessment, medication management, physical plants, residents allowed per room, bathroom requirements, life safety, Alzheimer’s unit, staff training for Alzheimer’s care, staffing education/training, administrator education/training, continuing education requirements and Medicaid coverage. The Department of Health and Human Services’ “Assisted Living and Residential Care Policy Compendium,” the latest one being in 2007, also cites regulations on assisted living services providers.
All 50 states and the District of Columbia regulate the industry. In 2010 and 2011, 18 states are updating their policies in the aforementioned areas, most especially in Alaska, Arizona, Florida, Georgia, Hawaii, Idaho, Iowa, Kentucky, Maine, New Jersey, New Mexico, Oregon, Pennsylvania, South Carolina, Texas, Utah and Washington State.
In 2010, the Long-Term Care Community Coalition (LTCCC) published an Overview of State Survey and Enforcement Laws, Regulations and Policies for Assisted Living, finding that state departments of health or social services oversee assisted living facilities.
With respect to assessments, NCAL’s provider-members have adopted what is known as a “person-centered” focus to evaluate each senior patient’s individual needs.
Yet, Terri Corcoran, board secretary, public relations chair and staff publication co-editor of the Well SpouseTM Association, a nonprofit association of spousal caregivers based in Freehold, N.J., agrees that social workers and discharge planners, not doctors, can best assist with a family’s decision to place an aging relative in long-term care.
“Get as many facts as you can,” Corcoran says to families with seniors in need of care. “Doctors cannot really assist, aside from presenting the facts of the illness and the basic needs the patient will have for continuing care.”
Corcoran, a senior who for the past seven years has provided care at home for her physically and mentally disabled husband, says a family’s decision about long-term care depends on the level of ability to cope.
“You can’t generalize,” she says, when asked theoretically about an overwhelmed elderly woman who would have to provide care for a senior-citizen husband with functional, health and behavioral problems. “Each situation is different. It depends on how much a caregiver can physically and mentally manage, and how much help they get, either from other family members or from paid home health aides.”
Corcoran says some caregivers have careers and do not have the time and energy to provide the needed care, which isn’t her case.
“Some people have careers and they are not wired that way [to provide care],”
she says. “It’s a very difficult decision and you can never say never,” adding that long-term care may be an option after years of care giving at home.
“Not only are [families] not well-informed but [doctors, long-term care facilities] are also not aware of internal conflicts [within a family],” he says. “You bring a lot of baggage to the table [when you decide to place a senior in a long-term care facility
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