Caring for Kara
With a heavy heart, we share with you the story of Dawn and Kara. In this story roles are reversed. A 2022 CFTC Recipient, Dawn cares for her daughter Kara who was diagnosed with a dementia called Frontotemporal Dementia (FTD) in Feb 2019 when she was only 29 years old. Kara was a mother, natural caregiver and a woman of faith. She was also a nurse who had worked on an Alzheimer’s unit.
After Kara gave birth to her first child, a son, Dawn observered Kara was more “going through the motions” than being a mother. Her daughter was becoming increasingly irrational and displaying misplaced emotions. Kara also began to have auditory hallucinations.
This is a rare symptom of postpartum depression and so naturally, that is what doctors focused on. FTD was nowhere on their radar. But when Kara’s condition only worsened and nothing was working, her mother, Dawn, refused to give up.
For a year and a half, every day Dawn woke up thinking “today we’re going to figure out what’s wrong and get Kara better…and I’d go to bed every night defeated.” This led them to the Mayo Clinic. Mayo promptly ordered a full workup, including a neuro psych exam and the family finally had an answer.
“The Behavioral FTD (bvFTD) diagnosis came with both devastation and relief,” explained Dawn. The diagnosis was heartbreaking, but her mentality was summed up when she said to the doctor at Mayo Clinic, “we’re already living the nightmare, you just put a name to it.”
Kara moved back home with her parents, her young son with the father. Dawn and Tim devoted their life to caring for Kara. Her dedication for her daughter was clear not in grand gestures but in the everyday attentiveness. “Activities of daily living (ADLs)” is a term caregivers are too familiar with.
It describes the fundamental skills required to independently care for oneself, (eating, bathing, and mobility). Kara’s ADL’s were declining at a rapid pace. By 2021, only two years into the disease, she was nonverbal, walking slowly, unable to initiate most tasks we take for granted, like getting dressed.
Dawn was by her side, constantly. Similar to how a nurse affectionately discusses her patience’s care, Dawn warmly told me about the discovery of sippy cups to help prevent her 31-year-old daughter from choking. This was their new normal.
Despite it all Dawn focused on loving and find new ways to connect with her daughter. Kara fell asleep every night holding her mother’s hand. Dawn also did a beautiful job of understanding that not every day was going to be perfect and the importance of letting things go. As she said in her interview with For Their Thoughts, “Pick your battles. No one dies from not showering.”
When asked how the CFTC Relief Grant will bring relief, Dawn replied, “I want my husband and I to go to my grandsons’ ball games and not have to worry about Kara. We always do things separately so one can stay with Kara. While I do not regret a single moment with my daughter, it would be such a blessing to hire help for a few hours a few times a month to be able to just be grandparents...and spend time with our grandkids.”
Such a simple yet beautiful request. If time with your grandchildren and a few hours of “normalcy” isn’t relief, I don't know what is!! Thank you for sharing your incredible mother/daughter love story. Your dedication to your family and your willingness to share so openly hits the hearts of everyone at For Their Thoughts.
We share this story of love between Dawn, Kara, her beloved son and the Kirby family in loving memory of Kara. Kara’s FTD symptoms, including swallowing issues, continued to progress and on Jan 1st, 2023, she took her final breath and is now at peace. From everyone at For Their Thoughts, we extend our prayers for comfort to the family.
Learn more about Care for the Caregivers
Pointing the Way and Offering a Helping Hand
"I was able to address my own health that I had been neglecting"
"I can go to church and monthly support group and know my mom is taken care of."
"I can take my husband to see his family one final time while he still can remember them"