Illustration by Iain Duffus
It was Susan’s idea to go public with her Alzheimer’s disease diagnosis. It has always been her desire to help others.
We are no strangers to overwhelming illnesses. In March of 2009, Susan was diagnosed with Guillain-Barre syndrome, a rare disorder where the body’s immune system attacks the nerves. Within 24 hours of arriving at the ER, she was paralyzed from the neck down.
After 40 days in intensive care and with extensive physical therapy, she recovered and decided to pay it back by becoming a registered nurse. She got her RN degree at age 45 and went to work in a psychiatric hospital.
She wrote a story for this magazine about her experiences, titled “Rise and Walk.”
In 2017, her managers called her in and expressed concern about her memory. A battery of tests, including a neuropsychological assessment, confirmed a severe generalized anxiety disorder exacerbated by her stressful career as a psych nurse. She was placed on disability.
But the memory issues persisted and soon were joined by a bewildering array of physical symptoms that still baffle her neurologist. She lost hand-eye coordination and could no longer write a simple sentence or sign her name. She had trouble walking and became a fall risk. Hand tremors prevented her from reading books or magazines.
Sometimes I have to help her lift a fork to her mouth.
What the hell is going on, we implored the medical community. Is this a result of Guillain-Barre? Her anxiety? Or something else?
MRIs were inconclusive. She tested negative for Parkinson’s disease dementia. A cervical MRI showed no pressure on her spine. Her neurologist then ordered a PET scan, which on Nov. 17, 2021, verified his suspicions: Alzheimer’s. At age 57. Navigating the tangled world of medicine, public health, Medicaid, Social Security disability and just plain day-to-day living with this diagnosis seesaws between brain-numbing tedium and hair-pulling rage. However, we have learned from our own experiences and those of others in our situation to, as Susan says, “live my best life.”
Simplify, be consistent, maintain a strict schedule and be ready to fight.
Since Susan can no longer climb stairs, we moved our bedroom downstairs. We also brutally decluttered the house. I painted the interior in neutrals and removed most pictures and decorations to reduce disorientation. Her daily schedule is the same: Around 9:30 a.m., I prepare her breakfast, followed by a grilled cheese and turkey sandwich with fruit and a cookie at noon. I prepare a balanced, hearty dinner every evening. If we go out to eat, it’s Saturday lunch. Any activities involving more than an hour away from home, such as movies, daytrips and vacations, are no longer options.
She qualified for Medicare, but it is not a golden ticket. Medicare and United Healthcare denied covering the PET scan that diagnosed her, considering it “unnecessary.” After submitting numerous documents and raising a lot of hell, that extraordinarily expensive procedure was eventually covered. Many tests and procedures have nagging copays and out-of-pocket costs that quickly add up.
Despite public perceptions, Social Security Disability Insurance is notoriously difficult to qualify for, so prepare to fight for it. Susan was denied twice, so a hearing was ordered. We had to travel downtown, where she, in her traumatized condition, had to go with a lawyer in front of a judge without me present.
She was approved, but this infuriating, unnecessary process set her condition back months. I later heard from our attorney that this judge approves only 18% of cases.
Don’t be shy about requesting help from your locality’s social services board. Susan has been approved for a home health care program through our county, but she must be on Medicaid; otherwise, it’s not covered. Out-of-pocket home health care runs $35-$50 per hour, with weekly minimums.
We have much for which to be thankful. I work from home. One of our sons moved back in to help as I continue to steer through Medicaid, home health care and the root causes of her physical ailments. His presence has been a godsend.
The small number of people who knew of Susan’s condition asked if there was anything we needed. Yes, there is. We need to abandon this maddening for-profit health care system and initiate universal health care, with more emphasis placed on mental health treatment. We need to streamline home health care options, pay professional caregivers more and stop making caregiver family members like me dance like a monkey just to receive essential services.
Lastly, we need to elect honest, compassionate representatives who are not stupidly fixated on election conspiracies, replacement theories, Satan-worshiping cabals or critical race theory. They must be laser-focused on the needs of all their constituents, especially the most vulnerable ones.
Do you want to do something for Susan and me? Please, vote.
Dale Brumfield is a journalist, historian, and the author of 12 books. He and Susan live near Doswell.
