Stories from Caregivers: Alicia from ARKANSAS
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Alicia
FROM ARKANSAS
My story started when we missed 9:30 church service on a Sunday morning seven years ago. At 11:00 my husband received a call. I knew Joyce would ask why we missed church, but she wasn't calling for that reason. She needed directions, not to her home but how to get out of the parking lot. Before long she moved in with us. The next five years were difficult, but rewarding. My mother died 6 months before Joyce moved in. It was a blessing for me to have a mom again. At first, she helped clean and walk the dogs. We would drink a mimosa on the porch at cocktail hour. She was funny, feisty and good company. As her illness progressed, she needed assistance to dress, eat, shower and use the toilet. That was the easy part. Letting go of Joyce almost destroyed our marriage, our finances and our health. My husband felt that he was abandoning her. He was afraid she would die; but she is thriving. She has her own room, sits with her friends, feeds herself and is never bored. We are not doing as good. We are more like strangers than husband and wife. We poured all our energy into taking care of mom. There was none left to nuture our marriage. So we are going to counseling; trying to get our marriage back on track. The stress weakened my immune system, and I have been unable to work for 18 months. And social security disability only pays 38% of my pay (60% of lifetime average earnings is not equal to 60% of one's highest or most recent earnings.) They told us to wait until she had only $2000 to apply for medicaid. But no facility wants to accept someone without money or long term care insurance. It took me, a benefits and insurance expert, three months to find a place that would accept her. We used $10,000 of our savings to cover two months of assisted living. Still, they are suing us for another $25,000. I am sure the hospital is next in line. While medicaid was pending, we brought Joyce back home for 3 months. By then, she could not be left alone for one minute. We spent thousands on caregivers, depends, medications, food and clothing to cover her basic needs. Who would have guessed that most retirement homes have a one-to-two-year waiting list? And many do not have a locked-down memory care unit and cannot accept Alzheimer's patients--period. Once a patient is in a locked-down memory care unit, they can only move to a facility with that same level of care. It has nothing to do with one being a flight risk, it's based on the level of care needed. Even our world-class hospital could not care for Joyce. She would walk from room to room asking where the party was and disturbing other patients. So one of us had to stay at the hospital with her at all times. What will happen when all of us baby boomers need long term care? Our pocket books, our family members and our community resources will be stretched beyond their limits. My advice is to read up on social security, medicare and medicaid now. Start saving as much money as you can. Scope out your local retirement communities and long term care facilities. Attend AARP and financial planning seminars. Buy long term care insurance now. Don't be caught unprepared. Start planning now. Your children will thank you for it.
