“If your parents were poor, I would say don’t worry about it. And if your parents had 2-3 million in their IRA accounts, I would say don’t worry about it. But your parents are middle class, and in this case that’s a problem.”
This is what an elder care attorney told me when my father was diagnosed with Lewy body dementia. As he has grappled with his care needs over the past six years and struggles with the emotions of watching him slowly deteriorate, worry about paying for care has been a constant concern.
Thanks to my father’s union work, which provided me with a decent wage and a modest pension, my parents are middle class. When my mother went back to work, the company doubled her 401(k) contributions. She invested as much as she could and saved for the short term to plan for the long term. It wouldn’t be a lavish retirement by any means, but it would be enough for peace of mind.
Three years ago, at age 72, they began taking their 401(k) required minimum distributions. The money provided an additional buffer for their Social Security and retirement income, and they appeared to be secure. What they didn’t expect was a catastrophic illness that wasn’t covered by Medicare.
Like the majority of Americans, they don’t have long-term care insurance because they can’t afford the premiums. My father’s memory care costs are quickly running out. It’s not clear what will happen to them when the money runs out – none of the options are good, which is a frightening feeling.
If my father had cancer or heart disease, he would probably live at home and home care would be covered by Medicare. But with dementia, an umbrella term that describes everything from Lewy body dementia to Alzheimer’s disease and more, Medicare considers the care needed as “attendance” or “companionship” and says that care can be provided by family members.
“We don’t view dementia as a medical problem,” a Medicare representative told me, much to my disbelief. But my father’s brain – which can no longer transmit commands to his muscles – is not functioning properly, which certainly seems to be a medical problem. He cannot shower, go to the toilet, take pills, dress or walk without help. He cannot be left alone. He cannot form logical sentences.
The author and her father in 1978.
Courtesy of Kate Ferranti
My mother cared for him at home as long as she could, but when we moved him to a memory care facility in mid-January, her physical and mental health was failing. I managed to help them with my demanding career, which was extremely challenging.
“Families are in crisis and no one is talking about it,” said a friend who lives in New York and often flies to Michigan to manage her mother’s dementia care.
I am not a politician or an elected official. I am not a doctor or a social worker. I’m just a daughter who takes care of her parents. And I am a citizen who looks around at our irrational healthcare system and feels helpless, angry and afraid.
Here are some suggestions for how we might start talking about this crisis.
First, neurologists should mention financial planning early in the disease—particularly when dementia can affect people in their 50s, 60s, and 70s. My father saw two doctors and neither mentioned long-term care or offered the help of a social worker. When I asked the second doctor about the prognosis, he brushed me off and said, “My advice is to go home and live every day.” Your dad seems like a happy guy.” When I later asked for home care asked, he told me to google “Visiting Angels.”
Because brain diseases are mysterious, doctors can’t predict how long my father will live (or how much money it will take). However, doctors should warn families about the financial challenges that come with dementia care, especially when there is a spouse. There are plans for life, even if it feels perverse while dying.
“‘We don’t consider dementia a medical problem,’ a Medicare representative told me, much to my disbelief. But my father’s brain, which can no longer transmit commands to his muscles, is not functioning properly.”
Second, policymakers should consider how Medicare can better support dementia patients. Classifying care needs as non-medical accompaniment, particularly in the later stages of the disease, is terribly misguided.
Recently, my father lost the ability to walk and feed himself; We are told that the next phase may be forgetting to swallow.
The brain is our most important organ – when it doesn’t function, it’s a medical problem that affects the entire body. My father is in a memory care facility where nurses and other dementia-trained staff provide treatment around the clock. Families can provide help, but only to a certain extent.
Finally, middle-class families should plan for old age, illness, and death, even if they are difficult to talk about. Having some basics in place – wills, powers of attorney, health care powers of attorney, a trust for a home before the illness has progressed too far – is a good first step and a good way to start a conversation.
Additionally, families should know what long-term care covers and costs. The average cost of memory care in New Jersey, where my parents live, is a staggering $8,150 per month. Those of us in middle age should start planning for ourselves, especially since long-term care insurance is no longer cost-effective for most people due to outrageously high premiums and coverage caps.
The author’s father gets a splash at the hotel bar in Milan, Italy, in 2019. “This was his last big vacation, about two years after his diagnosis,” she writes.
Courtesy of Kate Ferranti
My father is a gem of a person, loved by everyone who meets him. He and I are very close. He taught me how to swim, hike, ride a bike and drive a car. He taught me to be curious, to enjoy the sea, to appreciate nature and fresh air, to love food, to devour chocolate in all forms, to laugh at the silliest things, to give others the benefit of the doubt and to believe that most people in the world are good and kind, that I can trust myself and trust my decisions, and that I am loving and grateful.
He is the most mentally healthy person I know, and it feels particularly unfair to lose him this way – as his compassionate, calm and beautiful brain is failing.
Still, I can’t just sit in this grief and be with him in the time we have left, because there is still more research to do, more Medicaid planning to understand, more number crunching, more lawyers to hire, more fears to deal with, more hurdles to overcome while navigating a disjointed healthcare system.
To combine this slow loss, this long goodbye with extreme worry and uncertainty about my parents’ finances: How many months or years will he live? Can we afford this? Will my mother be able to stay in her house? Where will she go if we have to sell it? – is brutal and exhausting and tiring.
Every time I visit my father, our beginning is the same. He takes one look at me, registers who I am, and says, “I love you so much.” That sentence is usually the only clear one I get. In these precious moments, I am simply a daughter. But the moments are fleeting because the financial problems and stress are never far away. It shouldn’t be like this for me, my family or anyone else. If illness can lead to bankruptcy, I would say our system is broken.
Kate Ferranti has nearly 25 years of experience in workforce organizations, small businesses and now higher education, with roles in executive leadership and management, operations and communications. She lives with her partner in Brooklyn, New York.
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