Bryan might be interested in "Marianne's Story" in my book, "What to Do about Mama?" (See Chapter Six.) In it, Marianne states: • I provided care for both my mother and my father. My mother had multiple sclerosis my entire life, so my caregiving began as early as age 4, when I simply offered my hand to help steady her walking gait. • Mom’s disease limited her activities with me somewhat as a child, but I never felt it was a serious impediment. Although we never could go camping or skiing (something I did with my kids), we bonded more at double-feature scary movies—something she could do and enjoyed. At age 16, I took over more family errands, but I considered it a treat to get to drive around town in Mom’s car. The Internet became the biggest godsend for my mom as her mobility was increasingly limited. It allowed her to “travel” to the places I visited and find cool sites to share with us before our travels. She communicated with other MS patients nationally via the Internet—a bit of a support system for her—and eventually she crowned herself “Queen of MS Patients” because she couldn’t find anyone online who had the disease longer. (No doubt, there may have been others around, but it was fun for her to self-designate as the “Queen.”) • In college, I transferred home for one semester at the time my mom had to start using a wheelchair because it was a major life transition for her. But it wasn’t a hardship for me because I had planned to transfer schools anyway. After one semester in St. Louis I moved on to a new school, and my support role reverted to telephone support. • I made use of the counseling services offered by hospice after Mom died, mostly to discuss my lifelong sense of “responsibility” for her care and the unknown nature of what my dad would need.
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Bryan's Story: From Youth Caregiver to College Student
• I provided care for both my mother and my father. My mother had multiple sclerosis my entire life, so my caregiving began as early as age 4, when I simply offered my hand to help steady her walking gait.
• Mom’s disease limited her activities with me somewhat as a child, but I never felt it was a serious impediment. Although we never could go camping or skiing (something I did with my kids), we bonded more at double-feature scary movies—something she could do and enjoyed. At age 16, I took over more family errands, but I considered it a treat to get to drive around town in Mom’s car. The Internet became the biggest godsend for my mom as her mobility was increasingly limited. It allowed her to “travel” to the places I visited and find cool sites to share with us before our travels. She communicated with other MS patients nationally via the Internet—a bit of a support system for her—and eventually she crowned herself “Queen of MS Patients” because she couldn’t find anyone online who had the disease longer. (No doubt, there may have been others around, but it was fun for her to self-designate as the “Queen.”)
• In college, I transferred home for one semester at the time my mom had to start using a wheelchair because it was a major life transition for her. But it wasn’t a hardship for me because I had planned to transfer schools anyway. After one semester in St. Louis I moved on to a new school, and my support role reverted to telephone support.
• I made use of the counseling services offered by hospice after Mom died, mostly to discuss my lifelong sense of “responsibility” for her care and the unknown nature of what my dad would need.