Kristen remembers the exact day she became a caregiver, the day her husband was discharged from the hospital months after his spinal cord injury. Kristen learned the ropes from the nurses, mastering all the necessary techniques to take care of Jeff, a ventilator-dependent quadriplegic at home, in addition to being aware of risks and complications. “I was consumed by caregiving,” she shares.
Then importance of establishing routines in caregiving
Over time, she has established routines that work for her family. “I am happy that we’ve gotten this far with our sanity still intact (thought just barely so some days),” she writes. “But make no mistake, this life is hard. And some days are harder than others.” One of Kristen’s points of frustration is caregiver’s guilt.
“The guilt caregivers often feel when caring for a loved one while still trying to maintain other aspects of their lives is a very real, very common, and often very destructive emotion."
She herself has worked to find ways to keep it in check, but it’s still a challenge to put them into practice. “Guilt is an emotion I’ve had to learn to live with since we started this new life,” she admits. “Some days it’s completely manageable. Other days it’s unruly. Ugly. Unfair.”
“Some days, I’m needed constantly,” she shares, and on those days, guilt comes knocking. “The guilt hits hard, and oftentimes causes an avalanche from there,” she shares. “When I spend too much time caregiving and not enough time as a parent or a wife, I feel guilty.” Kristen tries to reserve time for their young daughter, but it’s inevitable that caregiving responsibilities will creep in as they don’t have any other outside caregiver.
“When I finally have a few minutes to myself, my daughter will come up to me and ask if I will play with her. I then feel the guilt swell up and crash over me because, in all honesty, the only thing I want to do is spend those few minutes alone doing absolutely nothing!”
Accepting and managing caregiver's guilt rather than "getting over it"
Kristen also maintains a job outside the home. Her salary is integral to the family’s finances, in addition to allowing her to get health care coverage for her family. Apart from that, she enjoys going to work and having time away from her caregiving duties. “Of course, all of this makes me feel…wait for it … GUILTY,” she shares. “Not only guilty that I like getting away from it all, but guilty because I can get away. My husband cannot.” The depth of the guilt she feels is exhausting. “I don’t think guilt is something you conquer as a caregiver. I think it’s something you manage,” she shares. Kristen is on her own mission to understand her own caregiver’s guilt. Don’t be too hard on yourself in the midst of the intense learning curve that comes with a new disability. It gets easier over time!
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