Saving Susan

“It is not how much we do, but how much love we put in the doing. It is not how much we give, but how much love is put in the giving.”

My name is Hope and I have created this GoFundMe for my mother, Susan.

Medicaid has denied my mum’s application and our subsequent appeal, leaving my family and me in need of $155,655.80 to cover the cost of my mother’s memory-care unit - the only reason she is alive today. Please consider donating through our GoFundMe if you are able. We need your help.

Our story is below.

For anyone who knows my mother, she is magic. She created a home that was open to everyone. A place for people to find comfort in a cup of tea, for children to come when they had a scraped knee, and for any animal to find refuge whether it was a mother cat and her kittens, a retired mule, or an injured bird. Though it didn't pay much, Susan followed her passions as a painter and teacher. She changed many lives by showing her students how to use art as a means of expression and how to see the world’s beauty and kindness. She was a mother to so many and gave everything of herself to those she loved. But now she – and my family – need your help.

In 2018, recently declared in remission after her fight with cancer, my mother was diagnosed with dementia, a progressive and terminal disease. Dementia affects the nerve cells in the brain, taking a person’s cognitive abilities, reasoning and language skills, as well as affecting countless other functions.

After her initial diagnosis, my brother, Linus, and his wife, Katlin, acted as my mother’s main caregivers. As a family, we did everything we could to keep her healthy and safe in her own home and were successful for many years. With Covid, however, Susan had a steep cognitive decline. She began to wander at night outside in the New England winters and would frequently become terrified if left alone for any length of time. Linus and Katlin took turns day and night to ensure her safety which meant putting their own lives on hold including their careers as well as their wedding. Eventually, it became clear that we could no longer keep Susan safe in her own home and we made the difficult decision to move her into a long-term memory care facility.

The options for long-term care essentially came down to either applying for Medicaid, which would cover the cost of her care at a Medicaid-accepted facility or paying out-of-pocket, which would amount to anywhere from $7,500 - $20,000 a month. With our inability to pay out-of-pocket costs and at the advice of an elder care attorney, we applied for Medicaid. We were instructed that we could move Susan into a facility while our application was pending and that, once accepted, it would cover the cost of the facility as well as the back charges. We were told this was a normal process and one that we could trust. We also had no other choice.

As many of you know, dementia is a cruel and unjust disease. One of the early signs, that oftentimes go unnoticed, is excessive spending and susceptibility to scams. As the frontal lobe deteriorates, reasoning and comprehension fall away. This happened with Susan. Before we realized the extent of her disease, she had spent large sums of money and given more to charities and friends. When she nearly fell victim to a phishing scam, Linus took over her finances and ensured what was left of her money was spent on her care. In a cruel twist, Medicaid used this as the reason to deny Susan’s application.

After a year of fighting with Medicaid, presenting our case in court, and filing countless supporting documents, Medicaid rejected our application. They cited Susan’s “excessive spending” from the years prior as suspicious activity. It didn’t matter that this was a symptom of her disease. It didn’t matter that we did our best to stop it. Medicaid denied us nonetheless.

What does this mean? It means that my family now owes a total of $155,655.80 to cover the cost of my mother’s long-term care facility - the facility that has kept her alive and given her an environment in which she is safe. The only way that Susan can remain in her care facility - something she needs in order to live safely and healthily - is for us to pay the total before the end of April.

Even with dementia, my mother is still Susan. She is still the radiant and loving woman that raised me and my siblings, and who was a true pillar within her community. But dementia has taken almost everything it can. First, it took my mother’s ability to paint - her personal and professional passion, then it took her ability to live freely. It stole the future we had planned where she would grow old in her home with the comfort and love of her family beside her. Now, it has bankrupted my family because we chose to trust that Medicaid would provide the services promised to every citizen, services that all of us pay into throughout our lives.

If you can help in any way, whether through donation, reposting our story, or both, my family and I will be endlessly grateful.

Any and all donations will be used to cover Susan’s long-term care bill.

With all our love and deep appreciation,

Hope, Steph, Linus, and Katlin.