Transitioning Loved Ones Experiencing Dementia
Emails downloaded
while my legs wobbled. I had just climbed a mountain - and descended one. A 14,000 ft. mountain, Mt. Kinabalu, in Kota
Kinabalu. We returned to our hotel, and a
spate of emails and texts dinged during our first brush back with the Internets
and reality.
The first email I
read was from my sister, Beth. I had tasked her with overseeing Mom’s care. She
was also the executor of my estate, should anything happen to me, in
particular, while I would have been, say, climbing a mountain.
Before leaving, I
had snapped a photo of my office closet, where I kept family files, and sent
the pictures to her. “Here is where Mom’s files are,” I wrote in one text caption. “These are my personal files.” I wrote for
another.
She laughed at
the time. I did too, recalling how she had toted my purple folder with all my
father’s medical information, the last time I traveled overseas to Ireland. My
father had never recovered from a nasty winter tumble, and spent his June and
July in and out of the hospital and rehab. Thus, when I had left for Ireland,
he was out. While I was in Cliffs of Mohr, he had gone back in.
The irony of me
leaving again had not been lost on either of us.
May 23, 11:07 p.m.
Cincinnati time, May 24 11 a.m. Malaysia time was the date stamp. It was now
six hours later than when Beth’s email was sent.
“Hi all. Hope you’re having a good weekend.
Just wanted to take a moment to update you on a few things.”
“Mom had a seizure and is at ER. This
JUST happened so details are sketchy. I am on my way to XX Hospital and
can provide more of an update once I know more.”
I panicked and
desperately wrote back, not knowing how far behind the time (or ahead of it) I
was.
“Oh wow. Just
now reading this. As we were on a mountain climb for a few days.”
“Is Mom OK? I can't believe
this happened while I was gone.”
I
thought back to the mountain climb earlier that morning. I had been awake since
2 a.m., trudging up sheared rocks by 3 a.m., near to the peak at five a.m. I was whispering to the wind at that time,
while also cussing at my daughter, Shannon, for getting us into this, and at my
husband, who moved nimbly ahead of me, then would sit to wait. Move, then wait,
instead of climbing lockstep with his beloved side by side. I quickly learned
who was my parnter in the race to the sunrise.
Beneath
my scant breath had been a prayer to return to Mom. Sure, she was 87. But that didn’t mean I
wouldn’t have wanted to spend any last days with her. It is a constant fear I
have now. That I’ll miss her passing away from me, two travelers on opposite
bound trains.
Emails
and replies went back and forth throughout the week, until I received this one.
“Mom is fine, just fighting a fever now.”
I had
been battling against wanting to flee back to the states, when I learned my
sister was fighting another battle.
“Mom
is fine, almost ready to go, but the hospital wants her to go to rehab.”
What? No. They can’t. They
can’t do that. Don’t let them. I was spewing
words before even typing them. Didn’t they know, someone with dementia cannot
just be moved around like pieces on a chessboard?
No,
they didn’t.
“Who
is they?”
“The
doctors and social worker.”
I was
baffled and aggravated by doctors and social workers who, employed by a hospital directly across
the street from two long term care homes specializing in memory care, didn’t understand the consequences of moving Mom to rehab before returning her
to her care home if it was unnecessary. The hospital was always
willing to take in elderly patients, most likely to pay for their new wing, but
not willing to expend the time, energy and money to train staff properly, on
the challenges of transitioning someone with dementia.
While
sometimes, the decision to transition a patient to skilled nursing/rehab is
logical, in particular when a physical disability, such a broken bone is in
play, there is no excuse for social workers and doctors who deny the rights and
wishes of not only the patient and family, but in this case, the staff from
Mom’s care home. How brazen, how arrogant,
how utterly ridiculous, to protect the hospital’s readmission rate, they simply
shuffled patients like a deck of cards, and moved them to the next pile. A
magical disappearing act.
We
should be way ahead of this curve by now, with all we know about dementia.
Hospitals treating the elderly should have passed this curve years ago, and if
not, then they shouldn’t be receiving reimbursements for Medicare.
Families
should take heed to fight like hell, enlist the help of the care home staff, to
keep a loved one in their most recent environment after a hospital stay. My
mom, I was told, was crabby at times, fending off PT. She had strangers telling her what to eat and
when, peeking under her dressing gown. I
would have been crabby too.
Eventually,
the hospital relented, but only after constant intervention by the staff at Mom’s care
home. I was so grateful Beth had the strength to battle in the same vein I
would have, with mettle and might. And I was grateful Arden Courts had lobbied
on Mom’s behalf, for her to return where she was known and loved.
I returned
to the states safely. Mom returned to Arden Courts safely. Both of us on the same day, technically,
depending on time zones.
I
committed to visiting Mom every day for a week, to gauge her recovery, to
remind myself of what I had almost missed. Mom returned home on a Tuesday, and
I found her Wednesday morning, sleepy, but smiling. I sat, and played a few Sinatra songs for
her, her eyes opening and closing whenever the beat was too loud or when she
knew the refrain.
The
resident supervisor came into the room and together we sat on Mom’s bed, got
her to drink a little Gatorade and discussed Mom’s condition, and her new
meds.
“I went
over there after I got off work, and told them, they should return your Mom to
Arden.”
Even
the activities director later confessed, “I was insistent your mom come back to
her home.”
The
compassionate, wise staff of Mom’s care home were all in, why wasn’t the
hospital?
For
each day onwards, caregivers continued to track me down, telling me how delighted
they were to have Mom back, how relieved that she hadn’t been placed in skilled
nursing care.
And
each day, she moved and wobbled and ate, until finally, she was initiating movement
into the courtyard to soak up the sun. At
day’s end, I would share with my husband, “Mom is so good. Either she is
getting some great meds, or she is just happy to be home.”
I did
research the new medication Mom had been prescribed, and discovered in some instances,
the drug actually slowed down dementia or Alzheimer’s disease.
But
her recovery had come so quickly, more so in being surrounded by familiar faces
and objects, recognizable words posted on signs, “Pull door until alarm
sounds.” and “Mechanical” and “Arden Courts News Center.”
One
day, Mom and I performed our standard routine, when helping her out of a chair.
“Mom, let’s get up, ready? Uno, due, tre.”
We
repeated together, “Uno, due, tre.”
She rose
up, unsteady, then gradually fell into my arms.
I held her for so long, this little woman of so much strength and
resilience. She buried her face in my neck and patted my back, as if, as if we
had been young again, both of us.
When
I finally pulled back, tears pooled in my eyes. “I thought I was going to lose
you, Mom.”
She
looked at me strange, ran her hand along my cheek, swiped my tears onto her
black, polyester pants, and said, “I love you, too.”
Mom
heard only what she wanted to hear. She was back.
