By: Amanda Johanson

Hi, my name is Amanda Johanson. My father, Mark, was diagnosed with early-onset Alzheimer’s two-and-a-half years ago at the age of 61. Alzheimer’s runs in my family on my dad’s side. Both my grandma and great aunt passed away from Alzheimer’s — although they didn’t receive their diagnosis until much later in life. 

My dad graduated from Purdue University with an engineering degree. He is a proud Boilermaker, as he was a varsity linebacker on the Purdue football team. His professional career took him from software sales at a multinational technology company to being a financial planner for a global financial services corporation when he retired. Raised by immigrant parents, my dad has always been hard working, determined and family-oriented. He has the biggest heart — he is passionate about his volunteer work and he is the most loving father and biggest supporter of my sister and me.

After Dad’s Diagnosis
My dad’s diagnosis crushed my family. I was shocked, scared, emotional and in denial. It was hard to talk about Alzheimer’s and my dad for over a year after diagnosis without bursting into tears. It was hard to focus at work knowing my dad was just diagnosed with a terminal disease. 

Immediately after diagnosis, his driver’s license was revoked by his doctor. I remember that being extremely tough for him, as that was the start of him losing his adult independence. My family was quickly connected with the Alzheimer’s Association, through which we have joined monthly support groups, received help from care specialists and taken educational classes on caregiving. At first, when my dad was in a mild state, the Association helped my dad get into clinical trials at the UCSF.

I felt extremely guilty as I live in Seattle, while my parents live in California. My mom has been his primary caregiver ever since his diagnosis. Over a year ago, my sister had an opportunity to move back home to California to help my mom take care of my dad, which has relieved a little of my guilt as my mom now has additional help at home.

Caring for Dad
My dad is now in a moderate state, as the disease has progressed and as it has become more difficult for him to take care of himself, I would say it has become even harder on my mom as the primary caregiver, both mentally and physically. Working from home has allowed me to take frequent trips back home to California to spend time with my dad.

The hardest part about this disease is we don’t know what the progression will look like or how much longer we will have with my dad. All we can do is educate ourselves on how best to care for him and what we possibly could expect with the disease progression.

My family is so grateful for the Association’s support since diagnosis. Personally, one of the best things I have gained from the Alzheimer’s Association is a monthly support group specifically for children of people with an early-onset diagnosis. Connecting with other people my age that are going through the same things as me and my family has made me feel less alone. 

One of the support group leaders I met says Alzheimer’s is like watching a funeral for someone that is still living and I couldn’t agree more. Watching Alzheimer’s slowly take away the father that I once knew is devastating for my family — but the Alzheimer’s Association has given my family the tools to put up a fight against this disease, and I’m so thankful for that.

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