GET A GOOD NIGHT'S SLEEP
TO FEEL LIKE .25 MILLION BUCKS
Aug. 11, 2004
By Mary Koch
When you figure there are at least 52 million family caregivers in this country,
I’m one in a million. I do not suffer from sleep deprivation.
For most caregivers, sleep is the first thing to go. This was impressed upon me
recently when I was one of a small group of caregivers from around the state who gathered
for a luncheon hosted by the Washington Health Foundation.
We were talking about respite and I mentioned that paid caregivers attend to my husband
for nine hours every night of the week. I sensed a decrease in the room’s oxygen
level as those around the table gasped in unison. It was as if I’d announced I was
buying a 2005 Lexus in burnished bronze to complement my 2004 silver Rolls Royce.
For a caregiver, a night of solid sleep is sheer luxury. Indeed, in the 10 years since
my husband’s stroke, we have spent a cool quarter-million dollars on overnight help
just so I can sleep.
Nights are a mysterious and often difficult time for people who are disabled or ill.
Medical crises rarely happen during the day but in the wee hours after midnight.
* * *
A SEATTLE caregiver, desperate for sleep, told how she paid an agency $100 a
night for someone to tend to her mother. That was the agency’s bargain rate: The paid
caregiver could be awakened (!) only two to three times per night.
So there was the daughter shelling out a hundred bucks for the privilege of having at
least one person in her home sleeping – the paid employee. It didn’t work out
because the mother would awaken the attendant several times a night and instruct her to
fetch the daughter.
My husband’s caregivers are wide awake and busy all night tending to John’s
variety of vital needs. Every once in a while, one will call in sick or go on vacation,
leaving me to care for him.
Those nights I catch short naps in the recliner when not tending to John. By morning
I’m ready for the new day – weary and slightly nauseous, my muscles aching and
my mind as bright as a 5 watt bulb. Because he’s worried about me, John doesn’t
fare any better.
A quarter-million dollars may seem luxurious, but if we’d been on our own at
nighttime, one – if not both – of us would be dead by now. I'm both embarrassed
and thankful to have had such wealth. Most don't.
* * *
WITH WHAT we’ve spent on overnight care plus an equal amount on other
medical expenses not covered by insurance, John now qualifies for Medicaid and thus COPES
– the state’s Community Options Program Entry System. In welfare-speak, that's
called a "spend-down." Under COPES, John's caregivers make $8.43 per hour (about
$76 a night) and will get a 50-cent an hour raise in October.
I still have an income, so I’m required to pay about half of the overnight
expenses. Believe me – buh-LEEVE me! – I am not complaining. I am endlessly
grateful that the safety net is working for us.
It is failing so many.
When the state decided to cut COPES funding, it came up with a computerized
"assessment" program. Social workers no longer have any discretion. They put
numbers in and get numbers back – frequently adding up to reduced services.
Our numbers were shaved a little too, but I’m not losing sleep over it. Not yet.
Sweet dreams.
© Mary Koch 2004
(Mary Koch writes about health care issues and her experiences as a
family caregiver. Her husband, retired newspaper publisher John E. Andrist, was severely
disabled by a stroke in 1993. They welcome your letters at P.O. Box 3346, Omak WA 98841 or
e-mail them.)
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