By Karen Evans
I think when one
becomes a 24/7 caregiver, they mentally move into that space in which only the take-charge dwell.
They develop a tunnel vision which enables them to concentrate on the needs of their loved one
without allowing the riffraff of everyday life invade that space.
I moved in with my mother and stepfather in 1988 after becoming disabled.
Following the death of my stepfather, Mom began going downhill mentally and physically. We managed to do
the housework, cooking, cleaning, laundry and all household chores. In January 1998, Mom fell off the bed,
breaking her wrist, which was soon followed by a bout of pneumonia, staph infection of the blood and a
diagnosis of congestive heart failure. I knew I would have to assume all responsibilities.
On Thanksgiving Day, 2000, I began bleeding from both ends and I
finally taken to the hospital. I was diagnosed with Goodpasture’s syndrome, needing both dialysis and
My biggest hurdle was returning to the job of caregiver with my health
so much worse. Because I am on chemotherapy, steroids and additional medications, I simply don't have the
energy to take care of both Mom and myself. We've had assistance in the cooking and cleaning department,
but it's still hard to clean up after dinner, get Mom on the nebulizer, prepare her for and get her into bed,
dispense her night's medications, make sure she can get to the potty chair when she needs to—and try to take
care of myself at the same time. I've been told repeatedly by my doctors that I need to stay off my feet
with legs elevated, and when I explain what my responsibilities are in caring for Mom, both doctors understand
my frustration but repeat that my health is suffering because of my caregiving duties.
Mom has CHF, A-fib and COPD. She has had two strokes and numerous TIA's
(mini-strokes) and has the beginning of Alzheimer’s/dementia. I have acute chronic thrombophlebitis, deep
vein thrombosis, degenerative disk disease, dissolving disks and now this Goodpasture's syndrome.
I no longer feel strong and in charge like I did when I began caring for
Mom. I feel lost and lonely, with my computer being my only link to the real world. I feel I'm not doing
enough, even though I'm doing all I can physically. I hate that we have to hire someone else to do the job
I had been doing for years. It's very hard to be a caregiver and a patient at the same time and feel like
you aren't doing a good job of either one. Trying to follow the doctors' orders about myself and take care
of Mom has been a challenge and will continue to be one until I get over this disease. I pray that no
caregiver gets this ill and has to revert to being the patient rather than the caregiver. It's very hard
to tend to yourself with a deadly disease while at the same time try your best to be a caregiver to a loved