Struggling to Find a "Forever Home"
The Stress and Trauma of Fighting a Broken Healthcare System for my Dad
Arguably one of the most difficult decisions I have been a part of in my adult life was having to find my father’s “forever home.” My mom had spent years caring for my dad by herself as his Alzheimer’s progressed. They were fortunate to move back to their hometown and spend a few winters in Arizona in a senior community together in retirement. The last summer before placing my dad was tough. We tried two adult day programs and in-home care. My father’s memory issues worsened, and he became very anxious when my mom was not there with him. We brought him to the VA in St Cloud where he was admitted. After several days we were informed by the care team that my dad needed to be in a locked memory care unit.
As much as we were preparing for this reality it was so tough. The grief, the pain, and the guilt were overwhelming.
Our family rallied to find a quality facility for my father. I remember vividly the day I picked him up from the VA hospital taking him to his new “forever home.” It was difficult for our family. We told my dad that he was there to have his medication adjusted hoping that he would acclimate successfully into his new apartment. Seeing my mom and dad separated from one another after nearly 60 years of marriage was gut wrenching. That summer he seemed to settle into his new surroundings. My mom was able to travel to Arizona for much needed respite time to sell their property to relocate back to the Twin Cities. When she returned from Arizona she was diagnosed with Ovarian Cancer. She had surgery and spent many days recovering in a transitional care facility while my dad lived his day-to-day life in the memory care unit.
One morning my mom received a message that her “dad” was in the hospital.
After a couple of phone call attempts, she finally was told that her husband, my dad, had been transported to the hospital in the middle of the night. I immediately left work to go to the hospital where I found my dad alone in a room. The staff at his facility had found him on the floor of his room and had him transported to the hospital.
My dad spent nearly 11 hours in the hospital without any family knowing he was there. He was left by himself in a hospital with advanced Alzheimer’s.
Our faith and trust in the facility was irreparably compromised after this situation. We went through the painstaking process of finding his second “forever home.” We located a home that we thought would meet his needs.
It was a new facility that made many promises about the quality of care they delivered assuring our family that every member of the staff received comprehensive training on how to support loved ones with memory loss. We were assured that they would be able to meet his needs physically and mentally as his disease progressed.
It became evident early on that this was not the case. The leadership team at his second facility was constantly in flux which led to deep concerns related to the safe care for residents.
Staffing ratios and training became a concern. Staff were barely receiving their minimum training required and most did not get the additional memory care training we were promised.
After nearly a year in this facility my father suffered a debilitating stroke while eating dinner. The staff on site that night had him walk back to his room even though he was dragging his foot and clearly in the midst of a stroke. While at the hospital we were informed that they would not allow him back in the building because he was unable to feed himself.
Our family again had to locate my dad’s third “forever home.” — We experienced many of the same issues with staffing levels, lack of training and oversight, and safety issues there. We installed cameras in his room and were shocked to see that many nights staff never entered his room to complete the required wellness checks that were supposed to happen every two hours. As his condition declined my dad was accepted into hospice care. He passed away quietly with our family surrounding him.
The trauma and stress of his nearly 3 ½ years in memory care deeply affected our family. We were so fortunate to have built strong connections and relationships with other families in the facilities he lived in. We lived in fear for my dad’s safety and were concerned that if we did bring forward concerns that we would face retaliation. In many instances we remained silent.
We were so fortunate to have found Elder Voice Family Advocates.
We realized very quickly that our story was not an isolated situation. Many families had faced the same exact concerns related to the care of a loved one living in facilities across the state of Minnesota. Listening to so many advocates share their stories helped our family realize that we were not alone and that there were caring people who could shepherd us through the difficulties we faced to improve the quality of life for my dad and so many others living in facilities. We realized that as my dad’s world got smaller that we could be his voice so that he was seen and heard.
One of the things I am most proud of is that my dad and mom were able to go to the Capitol with Elder Voice Family Advocates to share our family’s story with our Legislators.
I testified in front of our Legislators so that they too could get a small glimpse into the reality of just how broken our senior care system is in our state.
As I grieve my dad’s loss, I am comforted knowing that he was seen and heard that day we wheeled him through the Capitol. His life mattered and helped to drive the Legislation to improve the quality of care for the next generation of Minnesotans living in assisted living and memory care facilities. Without Elder Voice Family Advocates our family and so many other families would not have had the courage to come out of the shadows to advocate for the changes to the Legislation.