WHO AM I?

Who am I? What do I know about dementia? Who wants to listen to what I have to say?

I know this is not typically how a blog is written, but I feel that I should introduce myself before I speak about dementia.

My name is Johanna, and I am a nurse. You can see most of this on my About Me page on my website: www.puzzledmind.org. I grew up in a minority neighborhood. Predominantly Hispanic and Black. It was also rated one of the poorest cities in the U.S in 2011. I like so many of my peers during that era, was a teen mom/high school dropout. I lived at home with my mom, my grandfather, 3 brothers and now a child. We all chipped in where we could. You might be asking, “What does this have to do with dementia?”.

When my grandfather was diagnosed with dementia, we had NO idea of what it was. We did not know what to ask, or who to go to. We did not know what to expect. In these types of communities, resources are limited. Of course, we saw my grandfather forgetting things, but we blamed it on old age. We thought it was a part of the aging process. It wasn’t until my grandfather continued to forget his keys and the fire department came to his home numerous times because he forgot the stove was on that we decided to go to his doctor. After normal testing he was referred to a Neurologist. They sent him for some scans and then told my mother and I that he had Alzheimer’s Dementia. We both asked what that was, and the response was “He will get more forgetful. He might even forget who you are”. When we asked “What do we do? Can we give medicine to fix this?” We were told “No, there isn’t a cure. It will continue to progress. You should prepare to care for him”. That was all that we got.

Due to our background, we did not know where to go nor what to do. As time progressed, my grandfather moved in with my mom because of safety concerns. My mother was able to figure out who to go to for assistance in caring for him. Later, I decided to go back to school. I got my GED, then my nursing degree. One of my first jobs was in a memory care unit. There I got to see that there was such a lack of education for caregivers and staff. I was shocked. I couldn't believe there were so many people working in this field and had no idea how to care for anyone living with dementia. This was not their fault. This is when I realized this was not only an issue in communities, but it was also an issue in facilities and in the health field as well.

I decided I wanted to learn what else needed to be done to care for people living with dementia to give them dignity and quality of life, to provide the staff with support and education that they needed to care for themselves and others, and to assure families that their loved ones were in good hands. I started my work. I was able to go through numerous training sessions, visit different facilities, and go to The Hogeweyk- Dementia Village in the Netherlands. I was also interviewed on a podcast. As of recently, I was in Washington D.C discussing treatment for dementia with our State Reps and Senators. I will be discussing more on this later.

My goal is to get treatment approved for EVERYONE, provide education to caregivers, as well as people in the health field, and remind them to care for themselves. I am now a BSN, RN, Certified Dementia Care Practitioner Trainer, Group facilitator, Reiki Master, Yoga Instructor, Meditation Coach, as well as a Coach, and an Advocate. I volunteer with the Alzheimer’s Association. I provide free and paid services. This is who I am. This is what I know and have learned along the way, and I will continue to gather as much as I can. I will talk to whoever will listen.