Before I was ready: What it feels like to care for someone with early onset dementia

John’s diagnosis

Three years ago, my life changed forever. John, a husband to my mother, a grandfather to my children, and stepfather I admired deeply, was diagnosed with early onset dementia at age 59. John’s decline into dementia was gradual at first. He struggled with smaller daily tasks, was more prone to forgetfulness, but nothing my mother and I were ever concerned about. Everything changed the day he forgot how to get home from work. He was driving home on his normal commute, the same one he’d driven for years, when he took the wrong exit off the freeway. He pulled into a CVS parking lot and called my mother, confused and unsure of where he was and how to get home. That’s when we realized his forgetfulness was something bigger.

A unique type of dementia

John was diagnosed with early onset dementia after that day. At this point it was confirmed that things would never get easier. My role as his daughter was quickly challenged and I needed to step up to take on the dual title of daughter and family caregiver. At first John needed help with tasks like dressing himself, eventually progressing to bathing, and eventually the smallest of details like turning on the television were also my new reality. John’s dementia was unique. Aside from typical symptoms of dementia, he became abusive both mentally and physically. At this point, my role as daughter grew to encompass family caregiver and healthcare proxy as well. His abusive behaviors were devastating to my mother and myself. We knew his outbursts weren’t coming from the man he truly was, but it was hard convincing others to look past his abuse. No one wanted to help us. Three nursing homes turned him down. During this time, he was checked into a psychiatric hospital three separate times. I quickly learned that there is a huge gap in our healthcare system for individuals who have a dementia and abusive behaviors due to the disease. My 62-year-old stepfather was still just that, my stepfather, but no one else cared for him during this dark time like my family did.

Caregiving both personally and professionally

Outside of my caregiving duties I’m also a nurse at Seniorlink. I support people like my mother – people like myself – professionally. I know the emotional toll caregivers feel watching their loved one decline. My advice to all caregivers is to take care of yourself when times are hard. It can feel like you don’t have the time, but an activity as simple as going for a walk, taking a nap, grabbing coffee with a friend, can help. John died in September. I’m incredibly lucky to have cared for my stepfather for the last three years of his life. Working at a company that supports family caregivers is a blessing. I couldn’t have given him the love and support he deserved if I wasn’t surrounded by people who understand what it feels like to be a caregiver. This experience was one of the hardest of my life. Now it’s my turn to care for the caregivers, like they did for me.