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“Mom is Living With Dementia, Not Suffering From It.”

October 7, 2019 by Debra Hallisey

“Mom is Living With Dementia, Not Suffering From It.”

Words Matter.

One of the biggest and best caregiving lessons I’ve learned over the last five years is words matter. Starting a discussion with “You must”, “You should” get’s me nowhere with my mother. The concept is so central to how mom and I interact, that I devote an entire chapter on having hard conversations in my book “Your Caregiver Relationship Contract.”

But the words you use in your HEAD about your loved one and how that colors YOUR view of them is another way in which words matter. To add to this concept, the words used when you advocate for your loved one, colors how OTHERS view them.

Matt Perrin of Ro and Steve writes so beautifully about this very topic in his article “Choice of Words Matters In Dementia.” His point is that how we refer to, describe and communicate with people living with dementia matters. Words matter for people living with dementia for the same reason as they matter for my mom. The words in your head impact how you think of a person, which in turn impacts how others see them. The words you use when you advocate matter. The difference between “Mom suffers from dementia” and “Mom is a person living with dementia is night and day. As Matt writes: “Words matter because they give people the ability to recognize and treat your loved one with dignity. If we all engage in this way, over time, it will help do away with the stigma of dementia.”

Thank you, Matt, for broadening my understanding of why words matter. And for your advocacy work not only for your parents Ro and Steve, who are living with Alzheimer’s and Lewy Body Dementia respectively, but for everyone living with dementia. Kudo’s on your work helping people to navigate the world of home care and community living.

Disclaimer: The material in this blog is for educational purposes only. It is not intended to replace, nor does it replace, consulting with a physician, lawyer, accountant, financial planner or other qualified professional.

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Filed Under: Caregiving Tagged With: advocate for mom and dad, caregiver knowledge expert, Certified Caregiver Consultant, dad has Lewy Body Dementia, Dad is a person living with dementia, How can I be the best caregiver advocate for mom living with dementia, Mom has Alzheimers how can I get people to see her as more than her diagnosis, Mom suffers from dementia, New Jersey, New York, pennsylvania, spoken and unspoken words matter

About Debra Hallisey

Deb Hallisey is a caregiver knowledge expert. She earned this title helping her dad through his congestive heart failure and death. She continues to earn it as caregiver for her disabled mother. Deb brings a unique perspective to this educational blog. She has over twenty-five years’ experience as a consultant with Ernst & Young and Huron Consulting Group along with smaller boutique firms building and enhancing corporate training programs. Deb is an educator with a passion for helping others advocate for older adults and their families. Read more about Deb.

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Deb Hallisey is a caregiving consultant available for advisory services, speaking engagements, and guest blog articles.

To reach out to Deb:
Advocate for Mom and Dad LLC
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2601 Brunswick Pike
Lawrenceville, NJ 08638

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@advocatemomdad

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