Hi, I'm Marise...
...and I'm a Dementia Caregiver, or I was. Now, I'm a licensed therapist in Montana specializing in Dementia Caregiving, and recently what's called a Community Designer here on Mighty Networks hosting hybrid online and local support groups through my private practice, Experiencing Change, LLC. Now I'm able to exercise my passion to bring Dementia Caregivers together, because I know how lonely it can get, and how devastating it can be...especially when folks on whom you would otherwise rely tend to disappear because people in general are so afraid of "The D word." I know how much it can change your world view, expectations out of life, and daily existence, as well as doing a number on your mental health.
It Takes a Village...
Because Dementia is a family affair, it really does take a village. Sadly, however, most families are too busy and paying for care is too expensive! So I'm here to provide a place of companionship, education, and advocacy for Dementia Caregivers everywhere! My goal is to help you avoid becoming another Caregiver Casualty, and what's called 'The Second Death', which tragically way too many Dementia Caregivers are forced to experience.
Our Story...
On Monday, October 29, 2012, under a Full Moon my husband, James Chester Rowell, Jr. originally from Naples, Florida, died in Bozeman, Montana. It was exactly five years to the date and day of the week after McDonald's Corporation fired him following 28-years of employment, He was only 54, and our little girl was only nine. In 2009, one week after his 51st birthday, Jim was diagnosed with Frontotemporal Dementia (FTD), and toward the end showed neurological signs of its cousin, Amyotrophic Lateral Sclerosis (ALS), but in the end was autopsied Alzheimer's.
Who knew, and who cares...because I've come to realize regardless of its type, dementia is the epitome of what's called, "A Cancer of the Soul." It's a tragic experience for not only our Loved Ones with Dementia (LOWD), but also for us Primary Dementia Caregivers (PDCs) in general who are too often left to witness, cope with, and handle dementia and its insidious natures alone. I am telling you my story because I want you to know that I have been there, and I have seen what this disease is capable of.
The Fallout...
All too often our LOWDs are robbed of their identities, relationships, hard-earned benefits, and everything else that comprises a life. Once McDonald's realized it was dementia all along, they still denied a path for him to file for his disability, retirement packages, life insurance, healthcare, and the other benefits dedicating your life to a company like that tends to produce. My husband was basically thrown under the bus because it was dementia...had it been cancer or any other non-mind-altering illness where he could've followed the very dementia-unfriendly rules to file for his benefits, his experience (and ours) would've been very different. Instead, we were thrown under the bus with him and left to deal with his suffering alone, and I've heard from countless other PDCs with similar stories...and that's just not OK...
The Insidiousness...
We Primary Dementia Caregivers experience first-hand dementia's insidiousness alongside our LOWDs, and are alone when realizing something's going on, wondering how to assess the situation, terrified of what's gonna happen, and how to proceed...even the pre-awareness up to diagnosis stage is a traumatizing experience, and it's just the beginning! From the minute we get that diagnosis and are told, "I'm so sorry," and "Good luck," too often we are left alone to not only monitor and manage our LOWD's decline, but also our own sanity as our worlds become smaller and smaller. We become more and more isolated, and our lives are literally out of our own control as we watch our LOWD fade away...
The Village I Wish I'd Had...
I've lived that Loneliness of Dementia and supported many others who are doing the same. I'm passionate about supporting PDCs and educating their families on how to help! I'm here to keep you from ever having to face this alone! Along with my daughter and our dear friend and ally, Sophia Buffalino, our Community Manager, we're hosting this community where your stories are yearning to be heard and your LOWDs are waiting to be appreciated. We're building a place where, at any time of the day or night, you can pop in here and find something inspiring, along with live zoom support groups and daily activities to keep you going. We're here to not only help you survive this ordeal and create your new normal, but also help you educate your family members and friends on what you want and need in order to support yourself and your LOWD and provide the care they so desperately need.
Welcome Home...
While it saddens me to know why you're here, I'm glad you are! Welcome to the Dementia Caregivers & Family Network...we've got your back!