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Dear Fellow Caregivers -
My caregiving journey began a decade ago shortly
after I married my husband, an Operation Iraqi Freedom (OIF) Veteran who
began struggling with numerous service-connected disabilities including
memory loss, neurological issues and paralysis episodes. As his health
began to decline, I found myself having to step in more and more often to
help him navigate his increasing doctors’ appointments and answer
providers' complex medical questions because he couldn’t do it on his own
anymore. I didn’t realize I was a caregiver at the time and was just
doing what any wife would, by trying everything I could to help figure
out what was wrong and find effective treatments.
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In
the beginning I was often left out of conversations with providers, which
led to confusion and frustration for all parties, and poor health outcomes,
simply because my husband wasn’t capable of remembering everything he
needed to share with the provider or the recommended treatment protocols.
The doctor can’t treat something they aren’t aware of
and my husband can’t follow recommendations he can’t remember. Over the
past ten years and countless doctors’ appointments, I’m relieved to see a
shift in the culture of care, and I am finally not only being recognized as
my husband’s caregiver, but also seen as an ally and part of his care team.
This is called Inclusive Care.
As caregivers, we are the first line of defense. We
are in the home and know our Veterans better than anyone. I know my
husband’s military service and health history. I know all his diagnoses and
medications, what treatments he’s tried and what is and is not working. I
schedule all his appointments and make sure he keeps them. I make sure the
provider knows what’s going on because if they only ask my husband, all
he’ll say is “I’m fine.”
My Veteran cares what I think and follows my lead.
When a provider and I build a relationship of trust and work as a team, my
husband is able to relax and feel comfortable with the provider, ultimately
leading to a better health outcome. He’s more present and engaging because
he doesn’t have to worry about trying to remember every little thing. He
knows if he forgets anything I’ll fill in the gaps, and know what was
recommended and why. He doesn’t need to stress that he’ll forget because he
knows his provider and I have his back. I make sure everyone is on the same
page and sees the big picture so we can work together in his best interest.
Meeting new providers is especially difficult for my
husband because he has to start at the very beginning each time and isn’t
capable of sharing all the little, yet important details on his own. Just a
few months ago, he met a new VA specialist for a routine check in. The
doctor included me in the conversation and gathered all of the background
information. I told him about what we thought was a mundane, yet expensive
out-of-pocket treatment my husband had been on for several months that we’d
been told by a community provider was perfectly safe. The Veterans Affairs
(VA) doctor became alarmed at the lack of oversight from the community care
provider and ordered blood tests. Sure enough, the treatment was causing
serious health issues that put my husband’s life in danger if he continued
any longer. The provider's simple act of including me gave him the insight
to see the big picture and act swiftly to provide proper, lifesaving care
for my husband.
The VA, the Elizabeth Dole Foundation (EDF), health
care providers and caregivers are committed to making Inclusive Care the
standard across the country, in both VA and community medical settings. The
Campaign for Inclusive Care equips and
empowers care providers, allied health professionals and caregivers alike
with the tools and resources needed to work as a team to give our Veterans
the best care experience possible. Our country faces changes and challenges
like never before, which is why we must unite together, empower one
another, and give our Veterans the best Inclusive Care experience they
deserve.
While it’s an honor to serve those who served, at
times caregiving can be exhausting, isolating and frustrating, especially
when we struggle to take time to care for ourselves as well as our loved
ones. Please know you aren’t alone. The amazing staff at CSP and EDF are
here for you. I encourage you to participate in the life changing offerings
VA has to offer Veteran caregivers, especially programs like Whole Health. Also visit EDF’s Hidden Heroes page to connect with vetted
resources and a supportive, diverse caregiver community.
Take good care (of yourselves too),
Anne Adkinson
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