Karen's Story - I Was Both Patient 
and Caregiver at the Same Time

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 was 
finally taken to the hospital. I was diagnosed with Goodpasture�s syndrome, needing both dialysis and blood/platelet transfusions.

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 one.

My biggest regret is that Mom is spending her hard earned money to hire someone to assist us. I struggle with conflicting feelings of "At least she has someone to help her" vs. "This person is doing my job." This is one case where there is no right or wrong. If I do for Mom, I'll end up back in the hospital. If I stay in bed and let others take charge, I find it hard to live with myself.

Two years ago, Mom was given less than two years to live. I watch her carefully as she tries to eat (more for my sake than hers) or as she watches the Braves on TV and I believe at this point she's going to make a liar out of her doctors. I've readjusted my thinking about the future. I feel certain that within a year, I'll resume all of my responsibilities of caregiving without the help of strangers. I only have one mother and when she eventually goes to her grave, I want to feel successful in my caring for her and know that no one could have done any better.

 Subscribe to our weekly e-newsletter