Lina B., along with her sister, had suffered through the sudden and tragic death of her mother, and her father’s untimely passing only one and a half years later. By coincidence, her mother’s death occurred shortly before September 11, 2001, not far from New York City. After reeling from the aftermath of the tragedies in 2001 and 2002, Lina and her sister took a collective deep breath and tried to return some normalcy to their lives, which included a husband, son and a full-time job for Lina.
A few years later, Lina and her sister again found themselves in the throes of a family tragedy. Their aunt and uncle, living nearby and with no children of their own, suddenly needed help. The husband and wife were no longer able to care for themselves and needed assistance. Lina had helped to plan a birthday party with her uncle (her father’s older brother) for her aunt’s 85th birthday in 2007, opening the door for the couple to later go to her for help.
“When I was helping my uncle plan the party, I knew something was wrong,” says Lina. “Then, after the party I got a call from my aunt, who said they could no longer handle taking care of their home, managing their medication and controlling their finances.” The overriding health issues driving Lina’s aunt and uncle’s problems were her aunt’s high anxiety and her uncle’s diabetes, osteoporosis and the beginnings of Alzheimer’s.
Finding help with a care manager
Once Lina and her sister realized they were charged with the responsibility of helping their aunt and uncle, they put together a task list that included finding appropriate housing for the couple, getting the medications and finances under control, finding a Realtor and preparing the couple’s home for eventual sale.
Through networking with friends, Lina’s sister received a recommendation to hire a geriatric care manager, which turned out to be the best decision. “We could not do this without our care manager,” says Lina. “Without her, one of us would have had to give up our full-time job.”
Lina’s sister did most of the leg work finding the right care manager, through networking and Internet research. After phone interviews with several care manager providers, Lina’s sister settled on one. “The care manager came to my house and we had a four-hour debriefing – she probably took 25 pages of notes,” says Lina. “We decided we felt comfortable with her, then we brought her to meet our aunt and uncle.”
The care manager assessed the couple’s situation and recommended an in-home caregiver as well as specific doctors. Later, she also helped Lina and her sister choose an appropriate assisted living facility for their aunt and uncle. “She spent several weekends, along with my sister, visiting different facilities,” Lina recalls. “And after my aunt ended up in the psychiatric hospital for three weeks, the care manager picked her up and helped her move into her room at the assisted living facility.”
Today, the care manager goes to doctor’s appointments with the couple and follows through afterward. “With phone calls and follow-up work, she probably spends several hours a week working with my aunt and uncle,” says Lina.
Caring for the caregivers
In addition to working directly with Lina’s aunt and uncle, the care manager talks with Lina and her sister once a month. During this call, they not only discuss the aunt and uncle’s situation, but they also discuss how Lina and her sister are feeling. Like many family caregivers, Lina has gotten so caught up in her caregiving responsibilities that she sometimes neglects her own needs.
With the care manager’s help, Lina has been able to get a better handle on her self-imposed responsibilities. Lina lives nearby the assisted living facility where her aunt and uncle now reside, and was spending more time than necessary visiting, according to the care manager. “She listened to me talk about the amount of time I was giving to them and said it’s OK to back off,” says Lina. “I was speaking with my aunt several times a day, but the care manager said once a day is enough; and I was visiting twice a week and she told me once is enough.”
Besides the regular visiting and calling, Lina and her family have spent numerous hours working on her aunt and uncle’s finances. “The first year my sister and I and our husbands spent every weekend, from 9 a.m. to 10 p.m., getting the house and paperwork in order,” she recalls. “I had to take time off from work to get their legal affairs in order, including visits to the bank and driving my aunt to meet with her investment guy.”
The care manager has helped Lina, her sister and their husbands gain perspective on their caregiving situation. And fortunately, Lina and her sister have worked well together. “We have very different styles, but we were determined to survive this and make it a success story,” says Lina. “It could have eaten us up and pulled us apart.”
Lina’s advice for other family caregivers? “You have to just stay focused on the mission and don’t be bullied by the people who need the help. I just deleted the upsetting voice mails I got from them and moved on.”