What is Unpredictable about Dementia? November 19, 2013

I have heard two stories this week about families dealing with early onset Alzheimer's disease and the financial problems these folks have before the Affordable Health Care Act kicks in, which will protect them.

In one family, I first met the husband last year when he shared that both he and his wife had recently retired at 62, after 20 years of  teaching, had purchased a small home in an Active Adult community in Arizona and were looking forward to enjoying golfing, tennis, the good weather and perhaps a trip to Hawaii during their retirement. Modest goals, but doable on their budget. Then the wife started forgetting --where she was driving, what she needed to prepare dinner and she began to ask the same questions repeatedly of her husband who began to be afraid to leave her home alone while he played golf nearby. 

So she rode in the golf cart for a while, but became bored rather quickly; she also became demanding, short-tempered and anxious. A visit to the physician sent her for Alzheimer screening and prescriptions for expensive medications which have not improved either her mood or her condition and which tapped into their budget quickly. They were in the "doughnut hole." Their insurance company refused to renew their coverage since they moved from one state to another, claiming a pre existent condition and they were forced into a high risk program which cost them more money than they could afford. He cannot afford in-home care, they had no long term insurance; he sees their hard-earned nest egg draining away. His 87 year-old mother has moved from the mid-west to help care for his wife, but she needs lots of help herself.

The second story involves a younger woman who was born and raised abroad, in Romania, met and married an American working there, moved with him to the States and learned English in her forties, completed college and began working in the healthcare field. Soon she was forgetting to chart, the dosages of medications and lost her job. She paid for expensive genetic testing and found she carries the mutant gene for Alzheimer's. Her sister has recently died from the disease. Her husband is an entrepreneur--which means he works for himself and needs to shop for individual healthcare coverage. When her COBRA coverage expired, he was not eligible for insurance again due to his wife's high risk. He cares for her, reducing his ability to earn a living. They moved back to Romania where she has a senior center where she can spend her time without a $10-12 per hour fee and he has time to work.

LIFE is unpredictable; we must be prepared and we need universal healthcare.