What We Know Now
Wish We Knew Then
And Hope This Helps You
In Loving Memory of Our Mom Jackie
Our Mom was a sweet 4"11 lady with mild dementia who looked out for the underdog ("can you bring me to Brooklyn Park for a meeting, the aides want to organize, and I want to support them"). She resided in a visually beautiful new assisted living facility in Edina, owned and managed by the biggest senior living chain in Minnesota. She was easy to get along with and certainly not a demanding or high needs resident. Not shy when it came to concern for others, we are sure she spoke up when she learned another resident was not being treated kindly by staff members or a perceived wrong needed to be put right. Unbeknown to our Mom and her daughters, speaking up for others was not tolerated and so the retaliation began.
We had no idea that Minnesota was the only state not to license their assisted living and memory care facilities.
It never occurred to us that there would be no staffing standards, that infection control did not exist or that there was no oversight by the State to ensure the care people contracted and paid for was being delivered.
With three daughters in town, one being a nurse, we visited almost every day.
WE LEARNED that the morning aide had been sleeping in our Mother’s room many mornings rather than dressing and escorting our Mom to breakfast according to the service plan. This left our mother laying in wet Depends, unfed.
WE LEARNED the more we discussed our concerns with administration the more our mother was left alone and ignored.
WE LEARNED in assisted living, where you pay a la carte for services, the resident has the right to decline an escort to a meal or other service, but you will still be charged. While this may seem understandable, if a facility is very short staffed, often residents, many of which have memory issues, will never be given a kind word of encouragement to come to dinner.
WE LEARNED that unless a family member is witness to missed services, medication errors or worse, there is no apology and fees will still be charged.
WE LEARNED that the far majority of the aides were part time making 12.40 an hour, sometimes worked triple shifts and were not eligible for benefits. We never learned where our 7,500.00 per month went.
WE LEARNED after three consecutive urinary tract infections when questioned how long is too long, after the 3rd time of finding our Mom in a pair of the same Depends we had put on her 16,17 and 18 hours before, that the memory care head nurse and the VP of operations for the whole company could not tell us what the standard of care is for changing a soiled Depends.
WE LEARNED after moving our Mom from one facility to the next that it is a trick of the trade, to be told “maybe you will be happier elsewhere” if you ask or inquire why services you are paying for are not being provided or you have kindly given feedback.
WE LEARNED that most housing directors come from the hospitality industry and have no knowledge of health care. We learned these sales agents are compensated through bonuses for “making the sale” and developing a comprehensive care plan for safe, person centered care is often an afterthought.
WE LEARNED all too late, the very strong presence of the “imbalance of power” between vulnerable residents and those that they depend on for basic needs and care.
WE LEARNED that it is legal to have only one awake person overnight in a building no matter how many residents live in the building.
WE LEARNED that training standards are very weak. Aides, who provide most of the daily care only need to complete 8 hours of training (most of it on the computer) and it does not have to be complete until they have worked 140 hours.
WE LEARNED that one RN may “float” between many many buildings in different areas of the city and unlicensed personnel are very often the individuals left to care for the residents.
WE LEARNED it is a very rare occasion to have a Medical Director in charge of assisted living facilities.
WE LEARNED that most senior living facilities operate as a Monday – Friday 8-5 business when care plans are developed and charged as a 24/7-year-round contract.
WE LEARNED that because there were no staffing standards, a widespread and common practice was to lock residents into their room when they had gone to bed for the night.
WE LEARNED too late that it isn’t “sneaky” to put a camera in a loved one’s room. It is legal. We regret not putting a camera in sooner and regret not believing our Mom when she stated a man slept in her room.
WE LEARNED that families are not allowed to learn from our state investigative agency whether a facility has filed, as required, an incident of abuse or neglect.
WE LEARNED not to trust the administration when the CEO of the organization states “We will file the report of abuse to the proper authorities”.
We came to understand that in order to avoid an investigation, the facility most likely “under-reported” to the Minnesota Department of Health findings of abuse, neglect and maltreatment.
It wasn’t until we filed our own report of abuse that we understood the facility neglected to inform the state that the video footage of our Mom’s abuse existed.
WE LEARNED that our longtime friend and a young woman our mother viewed as a granddaughter who also began working at the facility part time a year after our mother was there was threatened with termination after the facility learned we had reported abuse neglect and maltreatment to the health department.
WE LEARNED the facility was upset when we chose to use an outside hospice agency.
WE LEARNED the facility had not trained the aides to operate a bed with side-rails. We learned their solution to get our near death 87-pound mother in bed was to make her crawl over the footboard and up the bed to lay down.
WE LEARNED via formal letter, after installing a camera to monitor our Mother’s care, now at the end of her life, that unless we let the facility know of everything that was going on “the care will continue to be below our standards.”
WE LEARNED there would be NO penalty imposed on the facility by the Health Department for the findings of substantiated abuse and neglect—because our Mother had died.
WE LEARNED that while the building was built in 2010, four years later it had never been surveyed.
WE LEARNED that it is a rare facility that lets the family know that medication errors, skipped services or an injury has occurred. Rarer yet is an apology for harm caused by neglect and maltreatment.
Given all we learned, after the substantiated abuse, maltreatment, neglect and ultimate death of our Mom, we knew we had to pursue change in an unregulated industry that promises, but very often does not deliver the care and well-being to our vulnerable parents, grandparents, friends and relatives.
Our grief was shared with a few other grieving families. Together, we became founding members of Elder Voice Family Advocates.
Currently, the collective voices of hundreds of families, honoring those that have suffered, join us as we move forward and protect the lives of our vulnerable elders.
Through our hard work and collective efforts, Minnesota will soon license approximately 2,000 assisted living memory care facilities throughout the state.