From USA Today:
“'I'm not OK
but I'm doing the best I can': Caregivers face impossible challenges during
COVID”
According to
The National Alliance for Caregiving and AARP one in five Americans are a
caregiver for an ill or disabled family member. Being a caregiver isn't easy
and during the pandemic "isn't easy" is an understatement. I've been
one for the past six years since my husband had an aortic valve replacement.
They fixed his heart but it didn't go as planned. He takes his nutrition via a
feeding tube and is dependent on oxygen. Going on vacations, dinners at
restaurants, bicycle rides around Manhattan ended for us long before the
pandemic. Up until recently, we hunkered
down in our vacation home in upstate New York – binging TV. Steve cooked
several dinners for me surprising me with his culinary skills. When a major
health crisis hit, we weren't prepared. Ignoring what Steve thought was a
canker sore, months later a biopsy showed it was a reoccurrence of throat
cancer he'd beaten 11 years ago. Surgery removed it and several lymph nodes. The day of his discharge, a
nurse broke his feeding tube and replaced it with one that didn't work right.
Within three days, he was severely dehydrated. It started with a cough, then a
terrifying rattling sound.
"Please
call your doctor." Always reluctant to do that, he said, "In the
morning." Then he threw up. "I'm calling 911. This is
very serious," "Don't. I'm not going to the emergency
room." Turning away from Steve, I called. Then said, "Don't be
angry." Steve was limp. His eyes were open but no response. "This
is how it happens," I thought, "when you least expect it." Waiting
for the medics was an endless 10 minutes. Then four peopled dashed into my
apartment carrying a stretcher. "In there" I said pointing to
the bedroom. I couldn't look bur I could hear. "No breathing,"
they said. "There's a faint pulse." A medic ran to where I was
standing. "We have to intubate now. OK?" "Resuscitate.
Please." Steve was admitted to Intensive Care, intubated and then
had a tracheostomy. At least with a trach I could see his face again – always
handsome. I adored him even after 45 years of marriage. The social workers and
medical team asked me if I had support. "What?" "You
know family? Friends? A sister, a brother, children?" "It's
COVID. My family lives in other states. No one is traveling but we communicate
via Zoom, texts and emails. It's not ideal but it helps."
Fifteen years
ago when my mother was dying from chronic pulmonary disease, ICU doctors said
the only way to survive was to be intubated. At 87, she refused. "I've had
a good life. That is not how I want to continue." She gathered our family,
and sent my niece to her favorite delicatessen for pastrami and corn beef
sandwiches. Three day later she passed away in a hospice surrounded by loved
ones. Like so many others, I'm physically alone and unlike my mother, we're
hoping Steve will recover. Now, the only people I see are in the hospital. They
don't hug me. They don't comfort me. There's no food. They expect me to get
that elsewhere. Cassie, my beloved
cocker spaniel, had been my support during Steve's past illnesses. After his
heart surgery, she waited patiently at the front door for three months while he
was in rehab leaving only to eat, be walked, or cuddle with me at night. I
couldn't have made it without her. She passed away unexpectedly at the start of
the pandemic due to respiratory failure. I said goodbye, leaving a huge crater
in my heart and in my support system. At times I panic. When Steve wasn't doing
well, I called a cherished friend and asked if he could help if the worst
happened. Sobbing, he said, "I'm here for you."
Others stay
involved at a distance. Steve's cousins sent bagels, smoked salmon, turkey, cream
cheese. Family and friends ask for daily updates. Too exhausted to text, I
write back anyway. It's important for me to stay connected. Everyone even if
they're not religious are praying for us. "Please let their prayers
work," I pray. One day a social worker approached me, "The team is
getting ready to transfer your husband to an LTACH." "A nursing home?
After all that's happened this year in nursing homes." "It's not a
nursing home." A doctor friend, assured me, "It's different. The goal
is to get a person off of the breathing machine and breathing on their own.
Some are really good." His words calmed me down. "Take care of
yourself," is the mantra I hear most often. Sometimes, it's impossible. My
phone is always with me, wherever I am. When it rings and the number is from
the hospital, I jump, fearing the worst. My therapist gave me the best advice.
"Take a day off from visiting. It's already been three-weeks." Two
days later, pushing myself to visit, I reached into my coat pocket, one I had
emptied many times before. Nothing was there and then I felt it: a tiny buddy
biscuit, one of Cassie's treats. It was a sign. "Cassie's watching over
us. It's going to be all right." I'm trying to cope. At times, I'm
drowning, sinking, exhausted. Then I remember, "I'm a swimmer and if
needed when waters get rough, I know how to float." I can breathe and
remind myself to relax and take long, deep breaths. It helps especially with a
soothing hot bubble bath. People constantly ask, "Are you OK?"
"I'm not OK but I'm doing the best I can for Steve and for me." It's
what caregivers do especially during a pandemic.
Ann Gorewitz
lives with her husband Steve in New York City. She is currently working on a
memoir, "Dog Therapy: Loving and Losing Cassie" about the healing
effect of loving a dog and the much needed comfort and support her beloved
cocker spaniel gave her during Steve's illnesses. 'The impossible
choice':Without paid leave, people of color often must choose between a
paycheck and caregiving That feeling you can't name? It's called emotional
exhaustion.
^ I was a caregiver
to a family member for 8 years with little to no physical support from friends
and family so I know how hard it is. ^
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