Families cope with what an Alzheimer's diagnosis means
Nobody could beat Virginia Lama Pro at Scrabble.
The longtime legal secretary had a superior grasp of the English language and a fondness for word games.
“This is a woman who could pick up the puzzle section of the newspaper, turn to the cryptoquote, say 'This is an easy one today,' and tell you whatever the phrase was. She never picked up a pencil to do the puzzle. It was so easy for her,” said Virginia's daughter, Johnna Pro, a radio talk show host and journalist. “She could solve any crossword puzzle. I'd call her for help, and I'd say, 'Are you working the crossword puzzle, and do you know what nine across is?' and she'd say, in disbelief, 'I can't believe you didn't get that.'”
Pro and her brother, Mickey, have watched for nearly a decade-and-a-half as Alzheimer's disease has turned their mother, once known for her mastery of words, into a woman who can no longer carry on a conversation, incapable of writing a word.
Such is Alzheimer's.
“My brother and I were talking about this the other day, that we are 14 years into this odyssey. I thought I knew what to expect, but I had no idea what we were in for,” said Pro.
An estimated 5.2 million Americans were living with Alzheimer's disease in 2013, according to the Alzheimer's Association. Being diagnosed with Alzheimer's is among the most crushing pieces of news an individual can hear.
Because there is no cure, they must confront the fact that it is a slow-motion death sentence, marked by increasing cognitive decline.
Counselors try to help Alzheimer's patients find peace and acceptance as the disease takes its course.
“There are many phases you go through in coming to terms with a difficult thing,” said Dr. Andrea Synowiec, a neurologist with the Allegheny Neurological Association.
Physicians are able to make a probable diagnosis of Alzheimer's by administering cognitive tests, such as the mini-mental state examination (MMSE). But doctors must first rule out other medical disorders, rendering Alzheimer's disease a “diagnosis of exclusion,” said Dr. Shawn Ewbank, a family medicine doctor in Washington.
Ewbank said the post-diagnosis discussion with affected families is difficult, especially because brain-related diseases are often scary for families to talk about.
“We all have bodies, but we live in our heads,” Ewbank said. “That's our throne. That's where we reside.”
Ewbank said his approach is honest and straightforward. He often gives affected families easy-to-digest materials such as WebMD's informational page on Alzheimer's.
“What people really want is ... certainty,” Ewbank said. “They want to know, 'Is there a problem?' even if it's bad. And if the problem is bad, 'How bad is it, and what can I expect?'”
An Alzheimer's diagnosis often leaves families feeling overwhelmed with questions. One major consideration is whether to establish a caregiving strategy at home or to look into a nursing home or other health care facility for Alzheimer's patients.
In 2007, Virginia's physician, Dr. Rhonda Wingrove – whom Pro credits with “guiding us through this nightmare” – told Pro that the disease had progressed to the point where her mother likely would need to be in a health care facility within the next year. By that point, Pro already had begun the search for a nursing home suitable for her mother, and when a room became available in November 2008 at Mon Valley Care Center, a mile-and-a-half from Virginia's home, Pro and her brother moved Virginia in.
Alzheimer's exacts more than physical and emotional tolls on its victims, families, friends and caregivers. Care can be extremely expensive, a circumstance complicated by potential legal entanglements.
More than 5 million Americans are dealing with the disease, and the direct cost of caring for victims in 2014 is projected at about $214 billion, according to the Alzheimer's Association. And the numbers are expected to skyrocket by 2050, to about 16 million victims at a cost of around $12 trillion.
Legal ramifications are daunting as well, but can be curbed through diligence. Washington attorney Lynn DeHaven advises, “Everyone needs a will, a regular power of attorney and a medical power of attorney. You need these at a minimum.”
Experts have a simple mantra for limiting legal and financial issues related to Alzheimer's care: preparation, preparation, preparation.
Clay Jacobs, vice president of programs and services for the Alzheimer's Association Greater Pennsylvania Chapter, said it's never too early to start planning once a family member is diagnosed.
“The planning is so vital,” Jacobs said. “Too often we don't talk about it or we don't want to, and it's the caregivers who are left making the decision on an emotional level, legal level.”
Pro said it's important to “start the conversation early,” which is what she and her brother did.
Virginia had worked for several years at the law firm Bassi & Associates, and she had her finances and paperwork in order when she was diagnosed with Alzheimer's.
“My mother was very clear in her wishes in regard to her will, her power of attorney and her advance directive. There's very little about her care that we question because she gave us the road map for what she wanted,” said Pro. I'd have that conversation early on, and ask yourself, 'What does your loved one want?'”
The Alzheimer's Association has a navigator on its website that helps caregivers create a personalized action plan and provides information on local resources.
The organization also has a 24/7 Helpline (1-800-272-3900) to answer general questions about the disease and to provide more specific information on treatment options, local resources, and legal and financial planning. Consultants also will talk to grieving families and will stay on the line as long as needed, Jacobs said.
Jacobs said the helpline in his chapter receives 15,000 calls a year, and it has become “a regular service.”
Another option is dialing PA 2-1-1, a free hotline to connect people with community and health services. The service covers 11 counties, including Washington and Greene counties, which accounted for more than 2,000 calls in 2013.
Jacobs said another useful resource for planning is BenefitsCheckUp, a free service offered through the National Council on Aging that identifies benefits patients may qualify for.
Pro, who has worked for the government, said she doesn't think the United States delivers services to the aging population very well, but Washington County is an exception.
“We are very lucky in Washington County that we have a fantastic Area Agency on Aging. The folks at the Department of Public Welfare are top-notch, and the people from the county whom I have dealt with have been absolutely stellar,” said Pro. “Because navigating the health care system for seniors is so difficult, be very proactive. Start with the Area Agency on Aging, put in a call to the Department of Public Welfare if you think your loved one will qualify for services; start making those contacts, and use the resources that are out there. Work with your loved one's physician. Work out what you can in advance. This disease becomes a nightmare. If you lay the groundwork, it makes things easier.”
Staff writers Brad Hundt and Rick Shrum contributed to this article.
Next month: Caregivers are victims, too.
Johnna files her mother’s nails.