Family and life-based decisions are more important than legal issues when it comes to caring for those with Alzheimer's Disease, an elder lawyer said at a recent seminar.
Attorney Stephen Spano from Spano & Dawicki told an audience of about 25 people at The Community Family in Medford, Mass., that what really matters is creating the best life for those with the disease and their loved ones. An important first step in doing so is for those with the disease to fill out a health proxy form, Spano said.
Health care proxies designate a person to make health and life decisions for someone if they are unable to communicate their wishes.
"Did your mother ever say that if you have your health you have everything?" Spano asked. "So what's the most important thing you can have? It's a health care proxy."
Spano put things into perspective when he projected an image of his own health care proxy.
In the document Spano included that he's a vegetarian and under no circumstances will he eat meat. He has been a vegetarian for 45 years.
"I don't drink coffee and I don't have dairy, but I do like two cups of green tea a day," Spano said. "This is what I like. And I'd like a little wine with my final meal by the way."
Although death can be a morbid topic of discussion, it is crucial to have such discussions to establish comfort for those who are entering the later stages of Alzheimer's Disease, said Sheila Witkus, a social worker at The Community Family.
"Families are not able to acknowledge the fact that this person is ill and it is going to get worse because this disease is incurable," Witkus said. "There's frustration and exhaustion. If you are able to have any conversation with them at all, ask them, 'What do you want?'"
Witkus recalled a Massachusetts couple that didn't fill out a health care proxy and ended up in a devastating situation.
The couple was married and divorced three times and both were severely ill. The wife was incontinent, never bathed, hoarded food, and soon rodents infested their home. The husband was so ill he couldn't smell or see the problem.
An agency intervened and placed the wife in a Massachusetts facility. The husband died soon after.
One morning she woke up alone, with no husband and with strangers bathing her. The shock of her situation sent her dementia into a rapid downward spiral.
The wife lost the little quality of life she had because she didn't fill out a health care proxy. If both the husband and wife had health proxy forms, their life-based wishes would have been honored. Their remaining days could have been peaceful and comfortable, Witkus said.
Gail and Jim Priest of Stoneham, Mass., said they attended the seminar hoping to find ways to eliminate loopholes in the paperwork for Gail's father.
The 86-year-old mathematician was diagnosed with Alzheimer's five years ago and can barely finish a sentence now.
"We didn't know what we were going to do long term," Gail said. "'Cause you don't. I guess you're hoping that they'll die before you have to get to the state of putting them in a hospital."
The Community Family provides adult day health services for those with dementia. The center was established in 1978 and has locations in Medford, Everett and Lowell.
The non-profit organization sponsors a variety of seminars to educate families that cope with dementia and deal with life-and-death decisions every day.
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