Living with dementia’s costs, financial and otherwise

The World Health Organization estimates that the number of people living with dementia world wide will triple by 2050. Those numbers affect the economy and health care cost, but they also mean a lot more people will become caregivers.

This is part of a series on aging in the Delaware Valley called “Gray Matters: New Tools for Growing Older” from the WHYY Health and Science Desk. The six-week series features audio and video stories as well as personal essays.

I met Margo and Ernie Woodacre at a beautiful assisted living facility in Wilmington, Delaware. Ernie moved here two months ago, Margo still lives in the couple’s home in Landenberg, Pa.

Ernie Woodacre was a DuPont executive, a life-long athlete and excellent golf player. He is still handsome and physically fit at 82, but his dementia has gotten increasingly worse.

Margo teaches college courses and still works as a consultant. For the first five years since Ernie’s diagnosis with cognitive impairment, she shouldered most of his care. She says it was a difficult and frustrating time. She was anxious about the future, dealing with her grief over Ernie’s dementia, and overwhelmed with her new responsibilities.

A friend reminded her of a saying “Life is not about waiting for the storm to pass, but about learning to dance in the rain.”

The Woodacres have always loved dancing — and decided to “dance” as long as they could. In 2010 and 2011, when Ernie was still doing fairly well, they traveled and enjoyed as many activities as possible.

They saw a counselor who helped them deal with their anxieties and frustrations.

The decision for Ernie to move into an assisted living facility was a difficult one says Margo, but caring for Ernie was getting all-consuming. He also said that he was getting bored at home, when Margo was at work.

He had long-term care insurance, which is how the couple can afford his care at Sunrise Senior Living.

Margo visits every day.  Ernie occasionally comes to stay at their home on weekends. Margo admits that she misses her husband very much and he says he worries about her worrying, and being sad. During our interview, he said repeatedly that they were very happy, and that he had no complaints about his life. At the same time, tears were running down his face.

Margo says she misses her old life, and some days it is hard to “live Plan B”, rather than traveling together, and enjoying each other’s company.

But, both agree that their love for each other sustains them, and they are committed to making the best of the situation.

Margo is writing a blog to help others coping with dementia.