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My Journey from Dementia Specialist to Family Caregiver

Have you ever experienced profound anger and frustration in your life? Whether it be at work, at home, or when cornered like an animal and wanting to lash out in anger, just to escape?
I have. As an occupational therapist and a dementia specialist, navigating the healthcare system as a daughter of dementia makes me angry.

Why does it make me angry, you might wonder? Because it is failing both the patient and the family caregiver, putting up unnecessary barriers to care, frustrating the people who are navigating more than 17 different systems just to be told they need to go back to where they started.

And I have 30 years of experience in healthcare. I know the system. I know the “tips and tricks” and should have been able to negotiate this easily. And I didn’t. Three years ago, when I noticed my father experiencing changes, I said something to the healthcare providers.But it took me an additional year to convince his primary care that something was wrong. This was eye-opening for me. And then it took another year to even get an appointment with the specialist.

I had high hopes for this specialty appointment since this is the only cognitive/memory health center in my State. But I left there disappointed. We had a diagnosis. But, other than that, crickets. A follow-up appointment, sure.

One year later.

No community resources were provided for cognitive loss. No online resources were provided for cognitive loss. No brochure or handout was provided for cognitive loss. I am trying to be gracious. I am a healthcare professional. And I was open and forthright about that. But my dad, who received a life-changing diagnosis, was provided absolutely no support. No resources, no information. Nothing. Crickets.

lizette as a family caregiver

Why is this important? Because ⅓ adults over 65 have some form of dementia. And the older you are, the more likely you will develop it. Roslyn Carter was quoted to have said: “There are only four kinds of people in the world. Those who have been caregivers.

Those who are currently caregivers. Those who will be caregivers, and those who will need a caregiver.” And if you are a woman between the ages of 40-65 years old, you are likely one of these 4 kinds of people. Because 66% of caregivers are female. And of those, 1/3 are daughters. And of female caregivers, about 60% are still working 30+ hours per week.

This prompted me to change the focus of the fledgling business I had started in 2020 called “Think Different Dementia” from focusing on professional caregivers to family caregivers.
What am I creating? I am creating an uplifting community for dementia caregivers. A safe, and positive space for family caregivers to find reliable education, community, and coaching, so that you can navigate a caregiving journey without stress, burnout and redeem your time, creating moments of joy.

If your loved one has been diagnosed with dementia, you are a family caregiver if you answer yes to any of these: you take someone to appointments; you help with grocery shopping, household chores, or maintenance; you provide personal care; you set up medications or administer medications: you help navigate the healthcare system; you provide emotional or social connection; you help pay the bills or feed a pet.

Many people do not even recognize that they are a family caregiver, and when that occurs, it makes a difficult journey even more overwhelming. My purpose and passion are to help
families recognize their power in caregiving, to change the narrative related to dementia caregiving, and to forge an easier way for people to live, laugh, and love through this special time in their lives, redeeming their time.

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About the author

“Think Different” Dementia’s owner, Lizette Cloete, OTR/L graduated as an Occupational Therapist from the University of Pretoria in South Africa in 1992. Lizette has almost 30 years of experience as an Occupational Therapist in a variety of settings, the latest being in the home health environment. She enjoys teaching on the topic of dementia, most recently presenting at a national conference on the topic “Dementia Made Simple”.

Disclaimer: These blogs, videos and any work done by Lizette Cloete OT, as a Member of Think Different Dementia, LLC, is given only as educational content and consulting work. This does not create an Occupational Therapist-Patient Relationship. The educational content and consulting work performed should not be considered medical treatment as an Occupational Therapist. The consulting work does not take the place of medical work normally performed by a licensed Occupational Therapist. Please consult a licensed Occupational Therapist for medical advice.

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