Karla Hult calls the decade ending in 2019 the hardest of her life. That was the year Hult's beloved father died after 10 years of suffering deepening dementia caused by Alzheimer's disease. The experience inspired Hult, a KARE-11 reporter, to help other families whose loved ones have Alzheimer's. On Father's Day this year, she launched So Many Goodbyes (somanygoodbyes.com), a company through which she offers public speaking, free mentoring for families and workshops at long-term care centers. Hult is a strong supporter of the Alzheimer's Association — she emceed the local organization's Walk to End Alzheimer's in September. With So Many Goodbyes, she considers herself a "captain or lieutenant" in the battle against the disease. But the association "remains the general."
Q: It's a rare family, it seems, that isn't touched by some form of dementia today. What do statistics tell us?
A: That the battle is increasingly urgent. The greatest risk factor for Alzheimer's dementia is age, and the number of Americans who are 65 and older is projected to balloon as the baby boomer generation grows older. The Alzheimer's Association estimates that the number of people 65 and older with Alzheimer's dementia will more than double by 2050, from the current 6.2 million people to 12.7 million.
Q: You say the last decade was the hardest of your life. What were some particular challenges?
A: I was grieving, I was exhausted, we were fielding questions of monumental concern. I had two children during this time, so I was bookended by babies and the disease. That was especially hard because you want to be present for your children and you want to be present for your parents.
Q: What was your relationship like with your dad?
A: My dad was the foundation of my life. He was the person I would call with questions and for advice. The sun rose and set on him and I adored him completely. To lose that moral and practical compass was really challenging.
Q: What was it like caring for him?
A: Caring for him was such an honor, but of course it was also exhausting and even heartbreaking. I was fortunate — and I don't take this lightly — that I had a flexible enough job that I could often see my dad. I remained his devoted and adoring daughter through every stage. Even after he no longer recognized me as his daughter, I hoped he saw me as someone who was kind, someone who respected him and loved him always. He cared for me my entire life, and he was there for me at my worst moments, my most difficult moments. But that's the perspective of a daughter who, after my visits, returned to my home, children and husband. Caregiving is uniquely hard on people like my mom, the partners who are caregiving for their loved ones every moment of every day. Those caregivers — along with the caregivers working in our long-term care centers — need our support and respect.
Q: What kind of help can So Many Goodbyes offer to others?
A: When I think back to the beginning of our journey, I was overwhelmed, constantly grieving, constantly trying to make important decisions. It was so challenging, trying to be an advocate for him and be present for my children. I really wanted a guide or a mentor, somebody with whom I could touch base once in a while. I want to be there for families in a very direct and profound way. I want to be available virtually, by e-mail or phone, to just connect and listen to what they're going through.
Q: What has your journey taught you about what families need most?
A: I think a lot of families feel a real need to share, vent their frustrations. I had one gentleman literally just cry with me. I was really touched later when he said, "I didn't know I needed to do that, that I needed someone to listen." As a reporter and as someone who extensively researches on a regular basis, I can look up information and give people a practical lay of the land. A lot of families don't realize what resources are available to them at the county, state or even national level. And, of course, there's the invaluable information and support from the Alzheimer's Association and the World Health Organization and National Institutes of Health. So I'm doing that legwork for them, especially if a person is overwhelmed.
Q: Your reporting skills are definitely beneficial. But your personal connection to this challenge must also resonate deeply with families.
A: Honestly, my most important service is still based on my experience as a daughter. A woman recently shared with me how her sisters were divided about whether to move their mom into long-term care. I know how that feels. I was the daughter who resisted moving my dad until we no longer could keep him safe at home. So I was able to share with this family what I realized for myself: that they would be able to return to just one role: family. When [they] visit [their] mom, [they] can hold her hand and just be with her.
Q: Are there ways to make the journey a more positive experience for families whose loved one has been diagnosed with Alzheimer's?
A: I think it's really incumbent upon the person to very consciously look for the joy. I know it's so hard, amid the grief and the exhaustion. But for your own heart, you need to savor what you still have. You still have the loved one, someone who you can hold hands with, look in their eyes. Cherish those moments.