Canadian-born Mary Beth Wighton, has been living with frontotemporal lobe dementia since 2012 when she was diagnosed at age 45. Two years later, she co-founded the Ontario Dementia Advisory Group (ODAG) with the mission of influencing governmental policies affecting the rights of people with dementia. “Since the formation of ODAG,” Mary Beth says, “members have [...]
Caregivers like Joey Daley, father of three, take the initiative to follow the first tip of caregiving: Learn as much as you can about your loved one’s disease or illness to know what to expect. If that’s not enough, Joey took an even bigger step. He’s helping raise awareness of dementia and his mother’s Lewy [...]
Clinical Trials at Your Fingertips Clinical trials offer patients and caregivers the opportunity to be involved in their family’s medical care. Their participation in dementia research will help shape the future of medicine. Unfortunately, most people don’t know about clinical trials. For those that do, it’s difficult to find ones for which they qualify. Studies [...]
Survey to Meet the Needs of Aging Population Los Angeles County (home of The Caregiver’s Voice) is conducting a survey to address the needs our diverse aging population. It includes questions about caregiving for people with dementia/Alzheimer’s. DEADLINE October 1, 2017 The survey is offered in 10 languages to meet the needs of Los Angeles’s [...]
UK-based CEO of ADI , Paola Barbarino says, “All the women affected by dementia are exposed to what has been termed a triple jeopardy. They are discriminated against as a result of their AGE, of their GENDER, and of their CONDITION.” “And then I looked up Dementia ” yields demeaning synonyms in the dictionary for [...]
Karen Miller’s mother suffered a massive stroke at age fifty. “My mother’s stroke caused paralysis on her right side and took away her ability to speak. Also, she didn’t recognize her reflection in the mirror,” said Karen during a recent interview. “Mom became emotional and seemed to lose her ability to reason. It wasn’t until [...]
Your parents cared for you growing up, and you want to return the favor. That makes sense, you feel obligated, you feel a sense of responsibility, you feel that you “owe it to them”. Before you jump in with both feet, you need to consider all of the implications of this decision. This is a [...]
Nearly 20 years ago, I delivered a speech in honor of a former caregiver for her husband with Parkinson’s. I titled it, It’s NOT the Thought That Counts . Rodin The Thinker Photo by Crystal Borde The speech was inspired by regret. In 1994, while on a tight schedule in Milwaukee, I decided not to [...]
If we’re to survive, we caregivers must find something to laugh about. We’ll thrive and find joy each day, when we tap our well of caregiver humor. There’s much to laugh about in simple everyday interactions if we stop being so serious about ourselves. I used to visit, José, my caregiver friend Lisa’s husband. He [...]
At Death’s Door brings to life the end of life. Many of us remain unaware of the important issues families face near the end of life. What does a DNR/DNI entail? What are the leading conditions that lead to irreversible decline? Who has the legal right to make decisions regarding our healthcare? What options does [...]
