The question, as all good ones, cut straight to the chase: So, what happens when the cash runs out?
The question, posed by reporter Cullen Browder of WRAL-TV, covered a lot of ground in an interview he did last week with Lo Lo, my Mom who has Alzheimer’s, and me. The response involved several backdrops:
- The costs to care for Lo Lo are staggering, eating away at her hard-earned, lifelong savings like piranhas. For example, her monthly pension and Social Security checks don’t even pay for half of the monthly rate for her to stay at Clare Bridge of Cary, a fine memory-care facility that currently charges $5,200. That figure does not include many other costly items such as insurance, prescriptions, doctor and hospital bills, clothes, food outside of the facility, hair and cosmetic needs, and many other miscellaneous expenses. In addition, each year for several months, as Lo Lo’s prescription coverage by Medicare lapses as it moves through the so-called doughnut hole, the price tag runs into thousands of dollars.
- While Alzheimer’s is taking a tough toll on Lo Lo as it advances, she still often is happy and recognizes my family and me. Despite a number of vascular mini-strokes, a Pacemaker and several stints put in her, Lo Lo remains in good physical health at the age of 80.To our family, Lo Lo’s good physical condition is almost miraculous, as a couple of years ago she was not expected to live following a stroke. While Lo Lo once needed a wheelchair, she no longer ever uses one. Lo Lo also overcame the inability to swallow food, a condition she had about two years ago for two weeks after a stroke.
- Unfortunately, unbeknownst to me at the time, Lo Lo and her husband Bob allowed her long-term-care insurance to lapse. Then, in January 2007, my family and I had to move Lo Lo from her home near Charleston, S.C., and her husband because of serious health concerns for her. In addition, I was told by medical, social services and law enforcement representatives that if my family did not put Lo Lo in a safer environment where she could not drive her car, the state of South Carolina would put her in adult protective services. Had the long-term care coverage stayed intact, we would not have had to dip deeply into her savings to pay for the high costs for Lo Lo to stay during the last four years at Clare Bridge of Cary and three other memory-care facilities where she previously lived.
- Because Lo Lo’s income in retirement only partially covers the costs incurred, it is only a matter of time before her savings could be depleted. When that happens, it will be very challenging for me to be able to keep Lo Lo in the kind of high-quality facility where she is now.
My response to Cullen Browder’s question, after quickly thinking over Lo Lo’s plight, was:
“Every day Lo Lo is alive is a blessing for my family and me. This isn’t about money.”
What this situation is about is just hoping – and praying – that Lo Lo, as this unrelenting disease continues its damage, can remain happy as she can be.
Still, my family and I are lucky. That’s because we at least can afford, for the time being, to keep Lo Lo in an excellent memory-care unit. Four years ago, as we struggled for weeks to try to find a good home for Lo Lo, my family and I discovered up close what a nightmare Alzheimer’s is for its victims – and the caregivers.
At night, when we were asleep, Lo Lo would wake my wife Denise and me nearly every hour. Lo Lo would turn on our lights in our room, looking scared, lost and alone. We would try to calm her down and put her back to bed. But it wasn’t long before she was up again, wandering through our house and calling our names.
During the days, Lo Lo would complain about wanting to go back home to Charleston, demanding her money and her car. These three ideas were like an endless loop in her mind. It was all that she could think about. Lo Lo would throw her luggage bags down the stairway, banging up the walls of our home, and try unsuccessfully to call a cab because she no longer was able to use the telephone.
We found a community center for Lo Lo in north Raleigh but that did not work. Lo Lo was not happy there either. Then, finally after weeks on intense research and searching, we found an independent living facility in the Crabtree Valley area. But Lo Lo, along the way, had developed a urinary tract infection that has not been detected and she became hostile with some of the other residents, resulting in her having to be transferred to UNC Hospitals geriatric psychiatric ward for several weeks, a move that she has had to repeat a couple of more times in the past four years. Since then, she has been in other facilities with similar occurrences.
The first summer Lo Lo was in Raleigh, we took her with us to Emerald Island for a week’s vacation. But that only lasted a day for Lo Lo, as she never could relax in the unfamiliar beach surroundings. We had to take her back to her memory-care unit.
Like so many people, our family knows what it is like to live with Alzheimer’s. And my heart goes out to so many people who, particularly because of financial challenges, do not have the option of being able to put their loved ones in memory-care facilities.