Jerry and Ellen Hauck have both experienced dementia caregiving, both volunteer for the Alzheimer’s Association, and both have learned to reclaim romance in their lives. Jerry has been both an education facilitator (5-6 years) and support group facilitator (8 years) and Ellen has been a support group facilitator for about 8 years too. Jerry is a former high school coach and Ellen is an author with a published fictional book about a husband and wife who travel the U.S. in an RV and discover halfway through that the husband has Alzheimer’s. They met at a spousal support group when both their spouses were suffering with dementia and they became strong supports for one another, stayed in contact after their spouses passed on, and eventually married.
Tell us about yourself.
“Over the last ten or so years of my marriage to John, I witnessed the ravages of dementia take him from me, and watched our relationship change. I retired in 2008 because I needed to be home with him. Since his passing, I have found love again, and together Jerry and I are reclaiming the happiness we had been missing.” – Ellen
“I am a retired high school teacher, coach and administrator who loves to golf in my spare time. I am currently working with the Alzheimer’s Association facilitating support groups and putting on education programs. Love has been a life saver for me as I was struggling until I met Ellen and she literally saved my life with love and support.” – Jerry
How did you meet?
“Jerry and I met in a support group. His wife and my husband both had dementia and we were struggling with how to properly care for them and not kill ourselves in the process.” – Ellen
“We met in a support group as we both had spouses suffering from Alzheimer’s and Lewy Body dementia. After losing our spouses, we stayed in the group to assist others through the process.” – Jerry
How does love show up in your lives?
“We have reclaimed romance and we express every day.” – Ellen
“Everyday love shows up in how we tell each other how much we love each other, in the little things we do for each other without thinking.” – Jerry
How can Alzheimer’s/dementia affect romantic relationships?
“The person you were romantically involved with is not the same person they were before. More often than not, they will become emotionally distant and might even forget who you are.” – Ellen
“You lose the person you loved. They disappear in front of you, but you have to love the soul of the individual.” – Jerry
How long have you been volunteering?
“It’s been about eight years now. After both our spouses had passed, Jerry was asked to help facilitate a separate group and he asked me to join him. At first, we co-facilitated with both Marya Kain in Medford and Elizabeth Hallett in Ashland. Most of the groups were ‘care-partner’ groups where we separated the caregivers from the care-receivers so members of each group could talk freely about their worries and frustrations. Eventually, Jerry and I started doing all the groups by ourselves. At one point, we had five groups a week.” – Ellen & Jerry
What have you learned from your time with families and the community through this work?
“We have learned, and shared, so many things. One is how rampant dementing diseases are. Another is how similar the symptoms are across the dementias. And we have learned strategies for handling the hard situations that come up because of the disease.” – Ellen
“We have learned that it is important that we continue to push the caregivers to take care of themselves as they struggle with the process.” – Jerry
Does the topic of love come up in support groups?
“Of course, it comes up all the time. Families and partners are heart-broken. Some caregivers feel their love for a parent is strengthened as they take on a custodial role. But more often the romantic or attraction one has felt for a partner is lost when that person is no longer the same. Caregiving is lonely. Ironically, the person you love and care for, while constantly with you, is not really there.” – Ellen
“It often arises when the caregiver says they love the person they had and wish they could have that person again.” – Jerry
Ellen, in your book “Sideswiped,” and the upcoming sequel, “Upended,” you tell the story of a husband and wife who travel the U.S. in an RV and discover halfway through that the husband has Alzheimer’s. What was your inspiration?
“Many of the stories come from my own experiences, and many are variations of things I’ve heard in support groups. The stories, real or fictional, are recognizable to anyone who has dealt with Alzheimer’s.” – Ellen
What advice would you give to others with a similar lived-experience to your own?
“My advice is to join a support group, and learn how to take care of yourself. Caregiving is tremendously difficult both physically and emotionally. Get help. Get support. Don’t try to do it alone.” – Ellen
“To never give up, and realize that life must continue if you lose a loved one, or you have to get professional help in the care of you loved one. By getting that professional care, you are providing them with the best care they can have to survive.” – Jerry
What should caregivers know about love and dementia?
“It is the most devastating disease that we would not wish on our worst enemies. And to remember, that love is possible after losing your loved one. Never shut the door to future happiness.” – Jerry & Ellen
Resources and help.
No one should face Alzheimer’s or another dementia alone.
Alzheimer’s Association 24/7 Helpline: 800.272.3900
As a caregiver, you may find yourself with so many responsibilities that you neglect taking good care of yourself. Read more about tips and resources that can help you be a healthy caregiver.
As the disease progresses, your relationship with your spouse or partner who has Alzheimer’s will change.