By Alessandra Malito, MarketWatch
Caregiving for loved ones is hard, especially when those loved ones have Alzheimer’s disease.
In his book, “My Two Elaines,” Martin Schreiber (with Cathy Breitenbucher, published by Book Publishers Network) describes the challenges of caregiving for his wife since she was diagnosed with Alzheimer’s 13 years ago, and the lessons he learned along the way. Schreiber, the former governor of Wisconsin, talks about loving his wife as she once was, and the woman she is now — and how hard it was to make that transition. He and Elaine, who is now in an assisted living facility, were high school sweethearts — she helped him make campaign posters when he ran for class president — and have been married for more than 50 years.
Caregiving is an emotionally taxing time, and can be financially stressing as well. About 15.7 million adult family caregivers take care of someone with Alzheimer’s or another form of dementia, and the care provided by unpaid caregivers for those with Alzheimer’s or other dementias was $217.7 billion in 2014, according to the Alzhiemer’s Association .
Schreiber spoke to MarketWatch about the challenges and lessons learned from caring for his wife with Alzheimer’s.
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MarketWatch: Why did you write this book?
Martin Schreiber: As my wife went through the stages of Alzheimer’s, I realized there were things I didn’t know soon enough. One thing that is worse than Alzheimer’s is ignorance of the disease — not about how the brain works, but the ignorance of caregivers not understanding it. The converse is, rather than worrying about the storm to pass, learning how to dance in the rain. I thought if I can say or do anything to help others on this journey, that’s something I will want to do. It is my hope that because of my experience, they can find greater moments of joy and have reduced anxiety, both by the person but also the caregiver.
MarketWatch: What would you say is the hardest part of caring for your wife with Alzheimer’s?
Schreiber: The hardest part was realizing I could not do this alone. The constant questions, the disappearance of the car keys and wallet. Sometimes the anger as this disease progressed. If it boils down to maybe one thing I wish I could do better was understand the challenge the person with Alzheimer’s goes through. The courage necessary to go on, the anxiety and the worry about the future, all of these things come into play. I only thought about if it was happening to me.
MarketWatch: You talk about watching your wife gradually transform into someone else, and loving them both — how did you learn to do that and what was that process like?
Schreiber: That process was one of the most difficult things I’ve ever done. It was difficult to let go of my first Elaine because her brain was broken and because her brain was broken, she’ll never be the same person. What was so hard for me to understand was her world was completely different than my world. When I got an understanding when she wouldn’t recognize who I was or the children, it wasn’t constant bombardment of hurt and pain — it was understanding this was a new person to love, and a new person to help, and a new person to make me laugh at times. So to let go of the first Elaine was the most important thing I could do to improve my relationship and my wife’s life.
MarketWatch: What do you think is the most important piece of advice for someone becoming a caregiver for a loved one?