An Alzheimer’s diagnosis. Where do you go? How do you cope? Who can help you? Everyday families have to face the tough reality of Alzheimer’s and the long, difficult journey ahead.
That’s why I was so excited when a childhood friend shared information about a new non-profit organization, So Many Goodbyes, that provides services and resources to families who are dealing with an Alzheimer’s diagnosis.
So Many Goodbyes
So Many Goodbyes founder Karla Hult started the organization after her father’s Alzheimer’s diagnosis. On her website, she says her family struggled at every stage of his 9-year Alzheimer’s marathon: from the early confusion, increased vulnerability and dependence, and varied experiences with at-home caregivers, to moving him into long-term care and his difficult last days. She writes, “We were simply overwhelmed by the hidden grief and practical decisions awaiting us at every milestone.”
Karla’s mission to turn her experiences into practical, immediate guidance and help for other families is so inspiring. I want to help share her story and resources with as many families as possible who are dealing with an Alzheimer’s diagnosis. Karla and I met by phone recently and talked about her services, goals, and advice for families and caregivers dealing with an Alzheimer’s diagnosis.
Q: What services does So Many Goodbyes offer families?
Karla: First and foremost, we’re here to assure everyone on the Alzheimer’s diagnosis journey… they’re not alone. We specifically try to shine light on this dark disease by mentoring families. We simply listen… and share advice and insights where appropriate. And we’re available as much or as little as the family needs: whether that’s just one long conversation or weekly “updates” during which the family can raise any new or ongoing questions.
Beyond that, I fundamentally believe in bolstering the bridge between families and caregivers in long-term care centers. Given that, we’re also holding workshops in long-term care centers that provide the “family perspective” to those fighting this crisis on the frontlines. The goal of these sessions is to affirm these heroic workers, while imparting some practical and profound tips that could transform their day-to-day work.
Finally, I continue to speak publicly at conferences and other events about our Alzheimer’s marathon, the toll on our family AND our country, and the wisdom we picked up along the way.
Q: Looking back at your experience, at what point in that marathon did things become the hardest for you and your family?
Karla: We struggled at every stage. In the beginning, we debated how to deal with my dad’s denial of the disease. Later, we helplessly and emotionally watched as my dad realized his memory loss (honestly, this stage — when the person still knows what’s happening to him — is uniquely cruel). And of course, we struggled when my dad could no longer talk, walk, or remember us as his family.
Each “milestone” featured its own burden, be it heartache or monumental practical decisions — (When do we need a caregiver to come into the home? When do we need to move my dad to a long-term care center?). Despite all of those challenges, I believe the hardest moment still waited for us at the end. I had hoped my heart would be ready for the final goodbye. It wasn’t. The challenge of Alzheimer’s is that because you’re grieving throughout the journey… you simply have nothing left to carry you over the finish line.
Q: Let’s talk about spouses and partners for a moment. If you could tell them one action they must do soon after learning their partner has been diagnosed, what would it be?
Karla: Look around you. Who’s in your village? Do you have children, friends, or neighbors who can support you during this difficult journey? And if not, how can you grow that support? What’s available in your community? Side note: that’s another place where we can help you… by doing some of that local research for you. Bottom line: you’ll need help on this marathon… to best care for your loved one AND yourself. And fortunately, you’re not alone. You simply need to take stock of who you can count on… and where you can reach out for help.
Q: What’s one piece of advice you have for someone working in a memory loss unit?
Karla: Look for the person beyond the disease. What did they love to do? Who did they love? Where did they work? How did they live their life? Relating to them in that personal way will allow you to see YOUR loved one… maybe even yourself in that person. And by “finding” that person, you’ll discover that you naturally slow down, look the person in the eye, and do those “services” with the utmost respect.
Please know: I offer this advice from a place of complete support and respect for all YOU do… Caregivers are truly the experts in this crisis. But all of us can benefit from the experiences and insights of those who’ve already finished this marathon.
Q: Karla, throughout the Alzheimer’s marathon with your dad, did you try to capture stories or memories from him? What was that like?
Karla: I started sharing our journey, very organically, on social media and partly to help raise awareness about the disease and the incredible efforts of the Alzheimer’s Association (I’ve emceed their Walk to End Alzheimer’s, Twin Cities — the biggest one in the country — for several years). I also embarked on a huge project for my TV station — the NBC affiliate in Minneapolis — to document the final years of my dad’s life. That footage resulted in a couple “stand-alone” stories and a half-hour special about Alzheimer’s, both of which have received several awards. But the greatest benefit of that outreach remains how we connected to communities across our region — including those currently saying So Many Goodbyes… who need to know they’re not alone.
Q: How can people reach you to learn more, to schedule a session, or to refer you to a friend?
Karla: Please check out somanygoodbyes.com — there, you’ll learn more about my family’s journey as well as details about the services we offer. You can also fill out the “Contact Us” form that will enable us to follow up on any of the requested services. You can also follow us on Facebook, Instagram, Twitter and LinkedIn @somanygoodbyes — So Many Goodbyes — Karla Hult. And finally, you can always email me, at: Karla@somanygoodbyes.com. I’m here for you… you’re truly not alone.
Taking Action After an Alzheimer’s Diagnosis
If you’re struggling with Alzheimer’s, you’re not alone. Reach out to Karla and get support.
I recently helped a central Iowa family after their father received an Alzheimer’s diagnosis. I interviewed him about his life stories and the legacy he wanted to leave behind. It was an amazing experience for me and I’d be honored to help your family through a similar experience. Send me a message and let’s talk!
Are you’re considering recording your own or a loved one’s legacy stories? There are lots of writing tips and free tools on my website to get you started, or you we can work together to interview, write, and publish a legacy life stories book.
