At 56 I became a first-time parent. Christine is about 10 years old, generally. She gives herself insulin injections, for example, but would have a hard time filling a syringe. She can bathe herself, but she doesn't do well with time so she always thinks she took a shower yesterday. She can write a short note on a birthday card, but can't remember how to address the envelope. She knows she has diabetes, but she doesn't understand why she can't have cookies and candy like everyone else.
I always knew that someday Christine, just a year older than me, would be more than my sister. Our father died more than 20 years ago, and my mother did the best she could as her own health deteriorated. Although it was more and more difficult for her to take care of my sister, she resolutely stayed in her own home until the last week of her life. I now realize how much of a gift that was to me and my brother. Instead of expensive care in a nursing facility, she held on to her money market account and her home for Christine.
I didn't have kids of my own, but I knew that I would inherit a child someday and would need money to care for her. Now, more than two years later, Mom's savings are gone.
Most of the time, that seems like the easy part. I'm also Christine's health care advocate, her caregivers' manager, her phone friend, her motivator and her disciplinarian. Yesterday, I made a deal with her about how many times a week she'll wash her hair. Last week, I talked to her eye doctor about the pros and cons of a lab test. Two weeks ago, I worked with her caregiver to manage the amount of allowance money she spends on stuffed animals.
I sometimes feel angry about having to take on this responsibility. I remember my father telling me not to worry because he had taken care of Christine's future. I'm sure he thought that her Social Security check, the money he left to my mother and the proceeds from the house would be enough. How could he have anticipated the cost of care 20 years later? Christine lives in an independent care facility in our hometown of Cincinnati and has a private caregiver 12 hours a week. The cost is high — more than $40,000 a year — and growing.
I'm glad that I'm in a position to help her live well. She loves the other residents, except the one who eats too loudly in the dining room and the one who smokes too much in the garden. Since she is by far the youngest, she is watched over by both residents and staff members. Every day, twice a day, she walks through the same hallways into the same dining room and is greeted warmly by her many friends. "Hello, Christine" and "How are you today, Christine?" She knows all of their names. She can tell you who lives in "independent" and who lives in "assisted." She happily repeats all of the staff gossip. She loves bingo. She gets a big kick out of visits from Elvis. And, in her room, she watches Bewitched, Gilligan's Island, black and white movies and Dancing With the Stars.
I'll have many more decisions to make about her care and her health in the coming years. Will I move her closer to me when I retire? How will I continue to support her financially? What will happen as her health worsens? I don't dwell on these things too much, though. They are just there, as they've always been.
For now, I talk to Christine every day. I ask her if she has taken her pills. I visit her as often as I can. I talk to her caregiver weekly. I send her cards and gifts every holiday. I mark her doctors' appointments on my calendar. I tell her I love her.
The last time I was in Cincinnati, she introduced me to her tablemate Audrey. "I call her mom," she told me later. "I'm going to get her a Mother's Day card. I think she would really like it. Do you think that's okay, Cathy?"
"Yes," I told my sister, "I think that's perfectly okay."
Catherine Rezak is co-founder of Paradigm Learning, an employee training company based in St. Petersburg.