1C
THE DAILY ASTORIAN • FRIDAY, NOVEMBER 18, 2016
WEEKEND
CONTACT US
BREAK
Rebecca Sedlak | Weekend Editor
rsedlak@dailyastorian.com
FOLLOW US
facebook.com/
DailyAstorian
‘TREASURE WHAT YOU
HAVE TODAY,’ BUT PLAN
By JOAN HERMAN
For The Daily Astorian
I
am alone in my kitchen, crying in the dark.
My husband, John Gaasland, had gone
to Urgent Care two hours ago for chronic
exhaustion and was then abruptly sent across
the street to the emergency room. Now he’s
on the phone telling me he is being admitted
to the hospital.
I cannot think straight. I am worried sick
for my husband and sad that I cannot be with
him. But, guiltily, I am perhaps even more
concerned for myself. Stuck in a wheelchair,
I cannot be alone overnight and feel utterly
helpless. John has been my sole caretaker.
I have multiple sclerosis, a sometimes-pro-
gressive disease (as in my case) of the cen-
tral nervous system. When I was diagnosed
in 1998, I had only a wobbly foot that would
come on after three miles of running.
Eighteen years later, I am in a wheelchair
full-time. My dear husband is essentially teth-
ered to me for all but several hours when he
gets out to run errands alone. It is his respite
time.
If there is anything I hate most about my
condition it is my loss of independence and
my ever-increasing vulnerability. I hate that I
can’t do, in many cases, even the simplest of
tasks. Signing a check, holding utensils with
my right (dominant) hand — forget it.
I hate that I have to rely on my husband, of
all people, to help me with the most mundane
and oftentimes intimate tasks of daily living
— not exactly romance-inducing, but we cer-
tainly have true intimacy.
No Plan B
On that night about six weeks ago, I hated
that I couldn’t be with him.
Yet I had made no Plan B for such emer-
gencies. I procrastinated setting up a safety
net “until tomorrow,” partly because I had no
idea where to begin. And making plans would
have meant admitting that just such an emer-
gency could occur.
Before John and I married in 2014, a close
friend asked John, point blank, if he was cer-
tain he wanted to take on the burden that
comes with marrying someone with a debil-
itating condition.
John probably should not have divulged
his friend’s words to me. Is that how she sees
me — as a burden? But she was right; caring
for someone with a serious disability is a huge
burden — literally.
I fear the responsibility is tiring John out.
Being worn down from having to care for me,
and on top of that, do everything else around
the house, likely made John more susceptible
to an opportunistic infection.
With no plan in place for just such an emer-
gency, the night John was admitted to Colum-
bia Memorial Hospital, I put out a frantic plea
to friends on Facebook, of all places, and also
started making phone calls.
I was lucky that a dear friend, J., who
prefers not to be identified, was available to
come stay with me. Another dear friend rec-
ommended I call a young woman who hap-
pened to be strong and needed money. She
could assist with transferring my no-longer
girlish figure.
For three days, these two women took
John’s place, transferring me into and out of
the bed, dressing me, preparing meals and
assisting me in the bathroom.
As for John, his kidneys began to heal with
treatment, and he was released from the hos-
pital three days later.
The problem still exists, though, of my
needing care with daily living tasks, and
John burning out from having to be caretaker,
housekeeper and cook.
Options?
While John was still in the hospital, a nurse
friend suggested we seriously consider having
regular in-home care to relieve him.
“We can’t afford that,” I blurted out.
I had to retire at 55 due to disability and
now receive Social Security disability pay-
ments. John, who is 65, also is on Social Secu-
rity and receives a modest pension from his
former employer, the state of Washington.
We are far from rich, but we do have more
resources than many people.
Neither private insurance nor Medicare,
which I start on Dec. 1, covers in-home care-
giver services, unless the patient has just been
released from a skilled-nursing facility, and
even then, only for a limited time.
This amounts to a gaping hole in health-
care coverage for the hundreds of thousands,
if not millions, of Americans like me, who
are otherwise healthy but cannot care for
themselves.
One bright spot is that lower-income
seniors and people with disabilities who qual-
ify for Medicaid can receive in-home care,
with prorated charges, depending on the
recipient’s income.
I do not know what will happen if John
dies before me or can no longer care for me. I
know it’s pointless to worry about this possi-
bility, but I do.
Submitted Photo
Joan Herman and her husband, John Gaasland, were married in August 2014.
‘LATE FRAGMENT’
The title for Joan Herman’s column comes from
the poem “Late Fragment” by Raymond Carver
And did you get what
you wanted from this life, even so?
I did.
And what did you want?
To call myself beloved, to feel myself
beloved on the earth.
Meanwhile, John and I have decided to
take a small monthly disbursement from my
retirement account to pay a caregiver to come
in two mornings a week to allow my night-
owl husband a little more sleep.
I also am registering with other local
in-home care providers, if and when the need
for more helpers arises. I have compiled a list
of contact info for friends and neighbors who
can help in a pinch. I never want to be left in
the lurch again, as I was six weeks ago.
“You can only take it one day at time,” my
nurse friend has told me when I’ve shared my
concerns with her. “Treasure what you have
today.”
Indeed, I do. And still I worry.
Joan Herman is a second-time Astorian
who was co-owner of Bikes & Beyond and a
former reporter for The Daily Astorian. She
will contribute an occasional column about
living with disabilities.
Submitted Photo
Joan Herman and John Gaasland visited Mount Rainier in July 2012.