Informal caregivers, particularly family members and friends of a patient, are the backbone of long-term care. They assist patients with personal needs, household chores, transportation, and much more.
Caregiving is enormously important. It’s also enormously stressful.
Research shows that caregivers experience demands and burdens that can lead to financial strain, depression, and even PTSD. Finding ways to cope with the expectations of caregiving — and ensuring self-care — are critical for both the caregiver and the patient.
The Alliance provides resources to help caregivers, including methods to improve emotional well-being, handle practical concerns, and deal with grief.
Two allies recently shared with us how they coped with the strain of caregiving.
Connect with others
Jasmin Meija was only 19 years old when her mom was hospitalized with terminal colorectal cancer. At the time, she was a new mother and the eldest of three other siblings, ages 15, 8, and 5.
With her mom in the hospital, she and her supportive husband quickly became caregivers to the entire family. Her husband would care for the children as Jasmin camped out at the hospital with her mom.
Jasmin Meija at AllyCon 2022
To cope with the stress, Jasmin focused on the happiness expressed by her baby and siblings, as they played and smiled. She indulged in simple pleasures, like a shower at home or a cup of coffee, and made a point to call friends.
Each time she did this, she said, she felt rejuvenated when she returned to care for her mom in the hospital.
Jasmin, who is bilingual and advocates for native language translations, summed it up first in English, then in Spanish:
“Remember that there are others — people outside of your loved one with the illness — who love you and also depend on you; remember to connect with them.”
“Ella les aconseja que recuerden que hay otras personas aparte de tu familiar con la enfermedad que también dependen de ti, acuérdate de pasar tiempo con ellos.”
Get outside of yourself
Like Jasmin, Asia Thomas was incredibly young when her mom was first diagnosed — only 20 years old. She became her mom’s full-time caregiver at 22.
For a while, Asia felt guilty for taking time to herself, away from her mom. Also, the pandemic complicated things even more. Asai was concerned about going out with her friends and inadvertently bringing back COVID-19 to her mom.
Still, after a certain point, she realized that neglecting herself wasn’t healthy, and wasn’t helping her mom any.
“How can I take care of someone else in a respectful, healthy manner if I don’t take care of myself in a respectful, healthy manner?” she said.
Asia turned to walking as her primary form of respite. She said that getting outside for 30 minutes and listening to a book, podcast, music — being able to think about something else — made her feel “ten times better.”
Another strategy Asia found useful was doing a creative activity alongside her mother.
Her mother had always crocheted, and while staying with her in the hospital, Asia picked up crocheting too. Together, they crocheted, and Asia said it was as if the sickness went away, and they were transported back to the time before her mother became ill.
Are you struggling with the demands of caregiving? Connect with our certified patient and family support navigators for advice at (877) 422-2030.
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