Life as a Caregiver


EARLY ONSET

CaringKind has thousands of clients that all bring unique stories and circumstances with them, but many share the same challenges. One caregiver shared her story and it reflects the early-onset challenges faced by an increasing number of our clients:

For a long time, when I worried about cognitive decline, including Alzheimer’s and related dementias, I worried about my aging parents. So, I was shocked when my 52-year-old husband started showing symptoms. In the beginning, because he was young and healthy, I didn’t know that they were symptoms of Frontotemporal Lobar Degeneration. But over time, and after the challenges of taking him to numerous physician appointments, we confirmed the diagnosis. The process took too long because of his age and the fact that he was suffering from a less common form of dementia with lesser-known symptoms.

Like many other families challenged by an early-onset diagnosis, my children were still young and living at home. I was the sole breadwinner for my family and my husband was a stay-at-home parent. He worked to feed the kids and get them out the door to school every day while he struggled with his rapidly developing illness. I was worried about him and the children, but because I was working to support us, it took time for me to recognize and understand eccentric behaviors that my children had come to think of as normal.

There was a long and bumpy road from that time to where I am today. Now, I am a single mother to my four children, and the legal guardian of my husband who lives in an assisted living facility. I can only think how much pain and confusion could have been saved if we had had an earlier diagnosis. That is why I am a passionate advocate for raising awareness, helping people recognize the signs of early-onset dementia, getting that all-important diagnosis.