I commend Karen for sharing her story and her struggles
about her husband. I agree with her points at the end of her story. Some key
pieces that are critical and need to take place. I understand her struggle
about the cost and the stigma. My Grandma’s cost of care was $4,500.00 a month.
Yes four thousand-five hundred a month…The only difference is that my grandma
(thankfully) had resources to pay for her care, but had she lasted another five
years I was going to have to sell all her assets and then look at putting her
in a home with the state because at that point the care she was getting would
be denied as I would not have been able to pay. This disease is not only
emotionally draining on families but very finically damaging. And the stigma’s
are real. I was happy I came across this article to share with my readers. It’s
worth a read. And I fully support and commend her for fighting the VA to get
the right care her husband needs, deserves and requires.
“Everybody has to die, but I wanted to die
after the kids grow up," Jim Garner says in a video from 2013.
That video, posted to the Daily Press website,
was recorded three years after Jim was diagnosed with early-onset Alzheimer's
disease. In the two years since, Jim's condition has continued to deteriorate,
and he's lost the ability to speak or write.
A 23-year
veteran of the Air Force, Jim and his wife Karen hoped the VA would pay for the
care he needs.
The
Department of Veterans Affairs provides care for Alzheimer's patients — but
there are conditions.
Late last
week, I spoke with Karen over the phone, and asked why the VA refused care for
her husband.
"Care for
Veterans with Alzheimer's or dementia is provided throughout the full range of
VA health care services. Depending on the Veteran's needs, services may include
home based primary care, homemaker and home health aide, respite, adult day
health care, outpatient clinic, inpatient hospital, nursing home, or hospice
care. Caregiver support is an essential part of all of these services."
According
to Karen, Jim was denied assistance because his diagnosis came after he retired
in 2005.
Because
Alzheimer's runs in Jim's family, it wasn't considered a service-related
disease. And because Jim's diagnosis came after he'd retired in 2005 — and
because their household income exceeded the threshold to receive assistance —
Karen and Jim are on their own.
"When Jim and I got married 18 years ago, I envisioned a
life of travel, raising our children, and eventually growing old together. Jim
is the one growing old, right before my eyes, seemingly aging years in
days."
Upworthy
reached out to the VA for clarification on these requirements but have not
heard back.
Karen is
tired of fighting the VA, but she refuses to give up — for Jim or anyone else.
She wants to help others with Alzheimer's. It's why she's such
an outspoken advocate for Alzheimer's care, having spoken to legislators,
conferences, and the media about raising awareness and pushing for additional
research around the disease.
"When Jim and I got married 18 years ago,
I envisioned a life of travel, raising our children, and eventually growing old
together. Jim is the one growing old, right before my eyes, seemingly aging
years in days. Our future life we dreamed of isn't going to happen," she
wrote in her Facebook post on Veterans Day. "Instead, I have spent
our last few years fighting — fighting to get a diagnosis. Fighting to get
disability. Fighting for research. Fighting for a cure. Fighting to get
financial assistance. Fighting to get quality care from the VA or anyone else
who offers it. Fighting to keep my family together and in peace. Fighting to
pay for Jim's new home. It has been an exhausting war and I just try to win as
many battles as I can while knowing we are far from being done." Stigma keeps a lot of people from opening
up about Alzheimer's. Karen wants to change that.
It's part of the reason she's been tracking her family's journey
at MissingJim.com over
the past two and a half years.
"There are so many people who don't speak up about what
it's like dealing with Alzheimer's, and I wanted to fight that stigma,"
she told me. To her, it's important to share her family's stories, even if they
are sad.
Karen has four suggestions to change how we
treat Alzheimer's patients.
First and foremost, we need to make sure family and caretakers
have the resources they need. As mentioned above, Jim's care
currently runs around $4,000 per month (nearly $50,000 per year). That's not
something most families can realistically come up with.
Second, we need to simplify dealing with insurance
companies or government agencies. Karen detailed the hours
spent filling out paperwork and applying for assistance. This problem is not
unique to Alzheimer's patients. As anyone who's had to navigate the bureaucracy
involved with health care can confirm, it can all be discouraging — if not
entirely overwhelming.
Third, we need to
get serious about funding research. A report from the Alzheimer's Associationpaints a grim picture
for the future of Alzheimer's research. As other diseases such as HIV, stroke,
heart disease, breast cancer, and prostate cancer claim fewer lives,
Alzheimer's deaths have been on the rise. It's the sixth-leading cause of death in America, and
it receives just a fraction of research funding compared to cancer, heart
disease, and HIV.
Finally, and this one comes from Jim, himself:
Let's start with that last one, OK? Let's
share the stories of people like Jim and Karen. Let's fight stigma.
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