May 2020
Martin J. Schreiber • Executive Editor
Scott McFadden and Marty Schreiber

"If there's one thing worse than Alzheimer's, it's ignorance of the disease." -- Marty Schreiber

But the Families
Never are OK…

Caring for my wife, Elaine, in recent years has taught me many things about Alzheimer’s and its impact on both people with dementia and their caregivers. A stark fact is that although we caregivers want to make our loved one’s life easier, we still must focus on our own life and survival.

I often remind caregivers and others that if Alzheimer’s is bad, ignorance of the disease is worse. But there is another reality - if caregiving is hard, ignorance of caregiving is even worse. 
 
It was my good friend Scott McFadden, president and CEO of the Lutheran Home, who showed me the necessity of being an aware caregiver. Scott understood the importance of helping caregivers cope and survive through his years of experience at the Lutheran Home, but he also lived it. Years ago, his wife was caregiver for her mother, who had Alzheimer’s.
 
What Scott shared, and described as an epiphany was: although he “knew our residents are always 100 percent OK. . . are safe, acclimate quickly and are well cared for. The families are never OK. They always worry about their loved one. They are never the same when they experience Alzheimer’s.”

While I was learning to live without Elaine in our home, Scott and also Kathryn Cavers (then chief operating officer) were working with the Lutheran Home team to develop a plan that to them seemed obvious but was groundbreaking. Namely, that when dealing with Alzheimer’s, there are at least two people who need help – the patient and the caregiver. 

So began the effort to ease your and my challenge as caregivers -- our plight, so to speak. So began the mission of Elaine's Hope® : to provide comfort and programs around the now recognizable need of caregivers, as underscored by Scott's obser vation: “There’s guilt, remorse…the families are always damaged. It never goes away.”

The Lutheran Home team realized a new memory care community needed to focus on the families through programming specifically centered on them as well as on the residents. "In the end, this was not a choice. We knew we had to do it,” Scott said. “Alzheimer’s is so hard on the families. They lose their loved ones over time. They don’t die quietly, peacefully.”

When I first began caring for Elaine, I thought I knew it all.

BUT, now I know that the medical profession, churches, employers, friends, must be aware and understand the insidious psychological impact on caregivers as they try to adjust to their loved one’s condition – being present physically but drifting away intellectually. Caregivers fall into a fog of grief, depression, anxiety, worry and confusion, not to mention hurt and guilt that saps emotional and physical strength. And at the same time, many suffer significant financial loss as they struggle to provide adequate care and resources for their loved one.
 
In total, it’s an avalanche of pain and worry that many caregivers experience. They may be unable or unwilling to do so. Caregivers must learn we cannot do it alone. It was Scott McFadden who helped me and others understand that.
 
And today, Elaine's Hope® Memory Care Assisted Living community at the Lutheran Home stands for – and exists – for helping both people with Alzheimer’s and caregivers live their best lives possible.
 
For the past few months, Scott has had a new, self-assigned title at the Lutheran Home: Just a Guy. He is helping with the transition to leadership under new-CEO Kathryn Cavers before he officially retires later this month. Until then, he will continue doing what he can to help ensure that everyone involved with the Lutheran Home and Elaine’s Hope® is well cared for.

Thank you, Scott. You are more than Just a Guy – you are a leader who helps caregivers and their families learn, cope and survive.
 

Marty is the primary caregiver for his wife Elaine, for whom his book is named. He compassionately promotes the value of learning about Alzheimer's and caregiving via personal appearances and serving as a media source. You'll enjoy his honesty and even his humor.


2020 e vents are on hold for now, but Marty is available to talk to your group via web conference. Email authors@mytwoelaines.com for more info.
Stay safe and be healthy!


Learn more at mytwoelaines.com/events