Memory care facilities: for patients or for profit?

Opinion by MaggieMantini

In 2012, Margaret Billman, my nana, was diagnosed with Alzheimer’s, an irreversible brain disorder that slowly destroys memory. Since then, my family and I have watched her aura slowly undo; forgetting who she was and where she came from a little bit more every day. 

Some days we respond to the same question 30 times: where has Chuck (her husband) gone? He had a massive heart attack on their front lawn while blowing the leaves four years ago. Nana re-lives the discovery of her husband’s death nearly every day; each time feeling just as new and painful as the last. 

Some days she refers to me as a worker in her assisted living home; others I am committing identity theft when I say I am her granddaughter. I’ve learned to never take it personally. 

My love for my Nana or involvement in her life will never be wavered by the impact this cruel disease has had on her remembrance of me. And without question, I can say the same for the remainder of my family. Even if she can’t remember, we do. 

Before Alzheimer’s, Nana was often found with kitchen utensils in hand and apron on; she’s most famous for her bundt cakes and large variety of British desserts. As young girls, my sister Anna and I spent hours in Nana’s closet, where she hoarded all clothing and accessories imaginable. I developed my playful, lively character in that closet. Nana embraced my artistry and stimulated my creative side by letting me push the boundaries of fashion. 

Nana never missed a dance recital or a birthday; she always made me feel like I was worth celebrating. She carried herself elegantly, like she could accomplish whatever she pleased. She radiated love and harmony, like some sort of angel. She was gentle, just as my mom is. 

Lunch Date Maggie Mantini `20 and Nana enjoy lunch. Photo courtesy of Ruthanne Mantini.

In the process of losing her memory, my nana has managed to keep her smile. I can still make her laugh and dance with me in the kitchen after family dinner. Her love will never fully depart from my family and I, because it lives in our hearts. 

 At the quick rate that Nana’s disease has progressed, her time for memory care is now. 

Before choosing a home for Nana, my mother had to quickly do her research and figure out the complexity of how to emotionally, physically and financially care for my nana; this includes things such as meeting with an Elder Law Attorney and creating an estate that includes a five year spin down plan: at the end of five years Nana would run out of money. 

Once this five-year plan is over, Medicaid would assist in the financial support of my nana. However, the elderly care facility in which my grandmother presides is deeply flawed and is costing her the care she needs at this stage of her disease. 

When my mother initially moved Nana into her facility, she was in the assisted living program, which is a place where most patients are relatively independent in their daily living. 

The next step in the plan for memory loss patients is memory care: a confined space where the patient is entirely dependent on others in doing things such as using the restroom and getting dressed.

 It was recently established that Nana’s disease has progressed to the level of memory care. Aides, caretakers, nurses and my family were all in agreement on taking this next step, until my mother discovered financial dishonesty within the facility’s administration. 

Just in the last month, the head of administration and its members changed. When my mom confronted them with the idea of Nana being moved to memory care, their promise of Medicaid had been neglected. When choosing this home, Medicaid served as the main promise made to my mom which she confirmed time and time again. And based on the original financial plan, Nana would only have enough money to survive without Medicaid for one more year before she is kicked out of memory care.

By conversing with employees who have fled the facility out of disgust, we have come to find out that this same situation has affected seven other families. As a result, my nana is being held back from the proper level of care she needs. 

My mom is searching for another facility that offers Medicaid or a fair financial situation as we speak. Thus, it will be another unhealthy change of environment for an individual who is already unaware of where she is. Consistency is so important for Nana as she will become fearful of her surroundings very quickly if they are repeatedly changing. 

After continuous discussion with this program’s new administration, my family has yet to receive any sense of urgency towards Nana’s future plans. Their overall response is unsympathetic and lacking in will to correct the dysfunction in their system. 

So my question is: who is benefiting from this arbitrary change in policy? By not accepting Medicaid within their memory care program, this facility is greatly financially benefiting, while my family has to entirely re-establish a game plan for the remainder of Nana’s life. We are incredibly aggravated, but beyond all, we are disappointed in the lack of care within the memory care system. These facilities should not let their desire for profit hamper the well-being of their patients. 



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