Caregiving Blog: What Assisted Living & Care Communities Don’t Tell Families

Pamela D. Wilson, MS, BS/BA, CSA, NCG

What assisted living and care communities don’t tell families is a subject rarely discussed. Assisted living communities and nursing homes provide care for a large number of older adults, short or long term. What guarantees exist that the care provided will be ethical, dignified, respectful and of a quality to ensure good care? 

The only guarantee is family involvement to make sure a loved one receives better than average care. This takes work and showing up at the care community. In many situations, family caregivers believe it will be a relief to move an aging parent from their home to a care community. In retrospect, the “care” duties and responsibilities were transferred from the home to a care community. There is no less work and the responsibilities remain the same. 

Moving an aging parent is a significant decision. Before deciding to move become more informed about what assisted living and care communities don’t tell families. Consider the option of hiring in home assistance. Moving loved ones to care communities can be successful, however a number of risks also exist. 

Placing an Aging Parent Results in Caregiver Guilt

Most assisted living communities operate under a “minimum standard of care” requirement. Family caregivers searching for the appropriate assisted living community for a loved one struggle with guilt and uncertainty about making the right decision.

Guilt because family members cannot provide more care for a loved one and the only option seems to be a care community. Family caregivers experience uncertainty because of the growing number of available assisted living communities, varied service offerings and the difficulty making the right choice.

A community that looks beautiful on the outside may provide horrible care. While a community with an average appearance may have excellent care. Never let the appearance of a community sway you in making a choice. Investigate. 

Assisted living and skilled nursing communities are needed and beneficial. Many of the staff working in the communities are dedicated and good care is provided. I’ve also worked with communities where due to staff turnover and other circumstances the care provided was sub-standard. These are the issues that assisted living and care communities don’t tell families about. 

Assisted Living Care Does Not Always Meet Family Expectations

Family caregivers, because of a lack of education and understanding of the system, become frustrated because they fail to receive expected care results for loved ones. The staff of care communities fail to fully explain available services and service and staff limitations and family members don’t know the right questions to ask. 

Few care communities will argue that the healthcare industry is challenged. This is not a discussion that is held with family members when rooms need to be filled.  

Professional caregivers in assisted living and nursing homes expected to care for our loved ones earn on average $12-15 per hour. Most employees have no health insurance. Few receive more than the minimum amount of training.

Language barriers exist for those for whom English is a second language.  Turnover is extremely high affecting the quality of care.  Profits are strained, especially in communities accepting Medicaid.  Budgets for training are thin and sometimes non-existent.

Better Than Average Care Takes Work

Families are led to believe that placing a loved one in a care community will be a wonderful experience. it depends. If an aging parent or spouse is fairly healthy, physically strong, and social then the answer is yes. If physical hands-on care is needed, if mobility is difficult, or memory loss exists the experience may not be so wonderful.

Family members cannot move a loved one to a care community and never show up. This is disastrous for a loved one who may be ignored and not receive good care because family caregivers are not checking in. I have witnessed situations where a parent was placed in a care community and died within six months because of care neglect and lack of family contact.

Family Caregivers Must Show Up to Ensure Good Care

The adult children rarely showed up to visit. The parent’s health care was neglected. Beauty appointments that used to occur on a regular basis ended. The children assumed the care community would provide all of the care. The adult children were tired of caregiving. A are community seemed like the perfect solution.

At the time caregiving becomes too much, professional support or support groups should be accessed by family caregivers. Burnout is a real experience and it can negatively affect the care and life of an aging parent. 

It is unfortunate when a parent asks for help, calls for help, asks to go to the hospital emergency room, and after staff checks with the son who is power of attorney is told to “ignore” the request because the parent is just asking for attention. After all, the power of attorney does has the power to make medical decisions to provide or withhold care. This decision making power places a parent at risk if the parent chooses the wrong child to be the medical power of attorney.

Choosing a power of attorney is a serious decision. The family is not always the best choice. It is important to choose the right power of attorney and to have a caregiving backup plan. 

What Assisted Living Communities Don’t Tell Families

Below is a short list of challenges that exist in the assisted living industry. These are the things that assisted living communities don’t fell families when families are inquiring about or touring a care community. 

1  If You Can’t Get Your Aging Parent To Do Something – We’re Certainly Not Going To Either 

Many communities sell family caregivers on the idea of assistance with bathing, dressing, meals medication administration and activities. The reality is that if a loved one does not wish to participate in one or all of these, the care staff cannot make (force) a resident to do anything.  This refusal of participation is considered a “patient right” and is extremely frustrating to family caregivers. There are some limitations. 

Patient’s Rights: The Good and the Bad

Patient’s rights exist to protect aging adults in care communities. This is good news. The bad news is that care communities fail to recognize the legal responsibilities of power of attorney and guardian and ignore requests by families appointed in these positions. 

The patient’s rights guidelines fail to mention the responsibility and ability of medical power attorney and guardian to make care decisions for a loved one. This is confusing to most, if not all care staff, as individuals with legal authority have the ability to override a patient’s right. 

For example, a loved one allergic to chocolate vomits and is repeatedly sent to the emergency room at a great financial expense and bodily harm. Care community staff would argue the patient’s right to consume chocolate.

The legally responsible party would argue health risks and expenses from repeated hospitalizations that their loved one is unable to comprehend. The right to eat chocolate can be denied by a legally responsible party if the consequences of doing so result in physical and financial harm.

2  Assisted Living Communities Accept Residents Well Beyond the Care They Are Able to Provide

Empty beds equal lost profit. Many communities accept individuals whose care borderlines the care provided in a skilled nursing community.  While it is true that an assisted living environment is more appealing, the risks of care needs not being met for individuals who require a high level of care are too great. 

Many families move aging parents into a care community only to be told that there is a rent and fee increase after 30 days. This is because the original assessment indicated that less care would be needed. One has to question whether the community was trying to admit an individual at a low rate to increase residency fully knowing that when the rate increase is presented the family will not move the aging parent again. 

In other situations, aging parents are accepted and then given 3 days notice because care needs are too much. This occurs mostly because the family tries to put the best foot forward and is not honest about care needs to the community staff. Not disclosing all information about the care needs of an aging parent can be disastrous. 

Need proof, google the expose on Emeritus Assisted Living Communities called “Life and Death in Assisted Living“.  While the events described happen in many communities it is also true that the staff at any one individual community and the leadership of the Executive Director dictate care levels that may be exceptional.

3   We Pay People to Send You To Us – Even if There’s a Better Community Option  

Assisted living communities pay high fees, usually equal to one or two month’s rent, to referral services. When families use a FREE referral service, instead of an independent consultant paid by the family, the best community may not be recommended. This is another situation of if you don’t ask we won’t tell you information that you really wouldn’t want to know. 

Several years ago, Michael Berens, a Seattle Times reporter, led an expose called Seniors for Sale about misleading and under the table practices in the elder care industry including free referral services.  The state of Washington and several states have passed protective legislation requiring full disclosure of fees, requirements of insurance and other protections in the aging and eldercare industry as older adults and family caregivers are extremely vulnerable.  As of today, many states have no similar legislation. 

4  Professional Caregivers Become Emotionally Involved and Will Take Sides Against Family  

As if being a family caregiver was not difficult, the emotional drama that occurs in care communities between caregivers can be shocking. Caregivers who take a personal interest in your loved one should be appreciated but monitored closely. 

In situations where only half of the story is evident and a loved one may be diagnosed with dementia, a brain injury, or a personality disorder it is difficult for professional care staff to understand that there is usually another side to the story that is reported. Caregiving staff will believe statements from an aging parent that children are performing horrible acts, stealing money, and abusing the parent. While this may be true in some situations, an investigation should occur to confirm the reasonableness of the claims rather than care staff taking sides against the family. 

I have personally experienced professional caregiving staff becomes enmeshed in family situations, support situations of triangulation, pit the resident against family members, and participate in other practices that damaged family relationships. This occurs due to lack of training and experience on the part of professional caregivers who become emotionally attached to the residents for whom they provide care. Professional caregivers lack boundaries of appropriate and inappropriate actions when emotions take over

5  Don’t Ask, Don’t Tell. If Family Caregivers Fail to Ask the Right Questions Potentially Adverse Events Happen 

Community staff exists to provide care, not necessarily to educate or consult with family about care issues. It is always the questions that family caregivers fail to ask that result in significant issues. Because many family members are new to caregiving they don’t know the right questions to ask. 

Family caregivers must become more knowledgeable about the systems within which they place family members and not rely on care staff to be the solution to all questions. Advocates are available to assist in this area where a lack of asking the right questions or not having sufficient knowledge can be dangerous.  

This is especially necessary in situations where parents or older adults are unable to manage their own care.  In these situations, it is truly buyer beware. Family caregivers must show up, monitor care, and mention concerns to care community management. 

6 We’re Not Federally Regulated (Only State Regulated)

Almost anyone can open an assisted living community after taking a class.  Large, mid-size communities and small personal care homes continue to be built to serve the growing number of baby boomers aging every day.  Again, good communities with high standards exist in equal proportion to communities with minimum standards and poor care. Inspections by most states occur only every two years. 

7 Medicare Compare – Many Families Rely on This Website to Choose a Nursing Home

The information can be dated.  Half of the information is “self-rated”. 

The main fault of this program is that it requires families and individuals to file complaints with the state health department in order for these complaints to show for a particular community. Most family caregivers, fearful of filing a complaint because they feel the care of their loved one will be at risk, refuse to file complaints.

Many communities with sub-standard care are never identified. These are real concerns that may be translated across all healthcare industries of service, mine included.  However, standards must be set and education must be a continuing requirement if we are to be able to change concerns about a healthcare system that places older adults at risk versus providing quality care.

The Decision to Move An Aging Parent Should Be Considered Carefully

The decision to move an aging parent should be considered carefully. What assisted living and care communities don’t tell families is significant. As in all situations related to caregiving, the more educated the caregiver can be the better. 

Do a risk analysis of the pluses and minuses of moving an aging parent. Is it possible that the parent can remain at home with in-home caregivers or is a move really the only choice? 

Tour multiple assisted living communities, research complaints online at the department of health, call the local Ombudsman. Gather as much information as possible before making an informed decision. The life and care of your loved one depend on you. 

© 2014, 2019 Pamela D. Wilson, All Rights Reserved.

Pamela D. Wilson, MS, BS/BA, CG, CSA, is a national caregiving thought leader, caregiving expert, advocate, and speaker who solves caregiving problems. Online support and programs are offered to caregivers seeking support and advice for the care of aging parents, spouses, and other family members. Pamela supports adults, age 50+, with positive aging advice and online programs to advance health literacy and self-advocacy. Collaboration with professionals in the specialty areas of estate planning, elder law, and probate, financial planning, and healthcare raises awareness of and sensitivity to stressful family caregiving and healthcare issues.

About Pamela Wilson

PAMELA D. WILSON, MS, BS/BA, NCG, CSA helps caregivers and aging adults solve caregiving problems and manage caregiving needs through online programs, live support groups, and an extensive caregiving library that includes articles, podcasts, videos, and webinars.