By: Erika Roden
My name is Erika Roden. I am the middle child, my mom was a single mom of me and my two sisters. I am from Everett, WA and currently live in Arlington, WA with my husband Scott and our two daughters, Kirsten and Rebecca. I participate in the Walk to End Alzheimer’s in honor of my mother who has early-onset dementia and my father who has frontotemporal dementia.
When Mom turned 56, we had some concerns with her vision and brought her to the doctor. Little did I know, that day would be the beginning of the longest journey of my life at age 28. After many doctor visits, it was determined that my mom had PCA, posterior cortical atrophy of the brain, early-onset dementia in 2012. That same year, I found out I was pregnant with our first daughter. You can imagine all of the roller-coaster ups and downs we went through that year.
Looking back, Mom’s vision issues were warning signs of her dementia. After doing my own research, it is apparent that her vision is highly impaired from her dementia. For example, when you talk to her, she doesn’t know where to look. If you try to show her pictures, she can’t see them.
My mom has gone through many phases of this disease; it has been scary, to say the least. To see the person who raised you accusing you of things you did not do or coming up with these very detailed stories which you know are not true is disheartening. Only those closest to her fully understand that she has no control over it and it’s coming from her dementia. It’s a mind game we have to play. The best thing we have learned to do is play along and make her feel comfortable.
My mom lived alone when she was diagnosed, which created a whole new battle. My sisters and I would get phone calls every few hours with her needing help, whether it was finding something around the house or turning on her TV. After a couple years of this, we decided it was best that she move into a facility where somebody could be with her at all times. My sisters and I were all raising little babies and found it unmanageable to be both new mothers and full-time caregivers for our mom.
Trying to find a home for Mom seemed impossible because she was on state assistance our entire life. We kept the prayers coming in, and within a year, we were able to get her placed into an adult family home. The emotions I have been through on this journey are indescribable.
In the very beginning, I did not know where to turn, and this is when I found the Alzheimer’s Association. The strong woman who raised us, three girls, by herself was now needing our help, and I felt helpless. I called their 24-Hour Helpline and literally cried for help. They were able to point me in the direction of local resources for my family.
My mom has been battling this awful disease for almost nine years now. I tried to be hands-on as much as possible, picking my mom up weekly and letting her spend time with our family and our two children. It now breaks my heart that she no longer knows who I am, but I know deep down that she really does know. Spending time with her is priceless. Going through this recent pandemic has been heart wrenching as we have been distanced.
In the midst of all of this, our family went through a move to a new house in 2018. Right about this time, I began noticing my dad showing signs of forgetfulness. One time he forgot how to drive home, another time he left his car in the grocery store parking lot. He was 69 at the time and Alzheimer’s disease runs on his side of the family. My husband and I moved dad in with us, and later that year, Dad was diagnosed with frontotemporal dementia.
Being a live-in caregiver has taken responsibility to a whole new level in a family dynamic.
I am ever so grateful for my loving husband who has been supportive along this massive journey that is far from over. I work part-time in the evening, and my husband and I tag-team taking care of the kids and my dad. Every day is a learning experience.
We have had endless conversations with our children, now five and seven, regarding Alzheimer’s disease and how it affects the behavior of their grandparents. There are so many words that can describe the feelings we go through, but we choose to look at the optimistic side and enjoy the moments we have with my parents. It isn’t easy, and I have to give myself constant pep talks daily.
I have attended every Walk to End Alzheimer’s since mom’s diagnosis. Attending the Walk is definitely a coping mechanism for me. I look for ways to support the organization because it has been such a relief to me in my journey. I have met many other people along the way that are going through similar circumstances, I have been invited to local workshops and I have been given recommendations for assistance. I honestly don’t know what I would have done without having this direction.
Every year, we try to put on a fundraising event to raise money for the Alzheimer’s Association Walk to End Alzheimer’s, because I want to be able to give back to the people who I felt have helped guide me along this adventure.
Held annually in more than 600 communities nationwide, the Alzheimer’s Association Walk to End Alzheimer’s® is the world’s largest fundraiser for Alzheimer’s care, support and research. This inspiring event calls on participants of all ages and abilities to join the fight against the disease. Find a Walk near you at alzwa.org/walk.