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A Caregiver’s Journey as a Professional Alzheimer’s Advocate

Jana Waring Helms
By Jana Waring HelmsSeptember 19, 2013

After twenty years of marriage, Christine Sotmary’s husband Alan began to show signs of early-onset Alzheimer’s. Like any loving spouse, she immediately committed herself to him and his new diagnosis; eventually becoming his full-time caregiver. Read about Christine’s journey as a caregiver in this exclusive interview with A Place for Mom.

Christine Sotmary's Book: When the Voiceless SingUnaware of all the responsibilities Alzheimer’s caregiving can require, including financial and legal decisions, Christine found herself looking to others for support and encouragement. Only she was too stubborn to ask for help. As she will tell you, she had an “individualistic approach” to caring for Alan. Thus, she took care of her husband for seven years before finally asking for assistance and making the tough decision to move him to a senior care community.

Healing Through Caregiver Writing

Sadly, in December 2007 Alan passed. As a form of therapy and as a way to cope with the sudden isolation, Sotmary turned to writing. Soon she had documentation of her entire experience to share, a memoir titled Living On the Verge of Insanity. And she didn’t stop there.

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Christine Sotmary is dedicating her time to other caregivers these days. Last year, she published a second book When the Voiceless Sing, which is a compilation of twenty-three interviews of other caregiving experiences. And presently, she is working on a curriculum specifically for new caregivers as well as finding ways to integrate caregiving programs into the community.  Most recently, she took thirty minutes of her busy day to share some of her experience with A Place for Mom.

Question: Almost 5 years after your experience as a Caregiver, you still seem heavily involved in the caregiving community. What keeps you motivated?

Christine Sotmary: I was very isolated at the time that I cared for my husband and I can totally relate to the Caregivers who are struggling without support.

Q: Is that what gave you the idea to create When the Voiceless Sing?

CS: Yes, I felt that Caregivers weren’t hearing stories about people like them. So I wanted a broad range of experiences and a deep understanding of what caregiving is and can be.

Christine Sotmary promoting mental health awareness on the global agenda. Image courtesy of The NGO Committee on Mental Health, New York.

Q: How do you define caregiving?

CS: Anyone who is caring for someone who is vulnerable, sick, disabled, frail or emotionally challenged. The only group I leave out are parents of able bodied kids, because even though they are caring for a child, they get support from other parents, teachers, professionals at schools and parenting programs.

Q: Has it been difficult to re-enter the world without your husband Alan?

CS: If I hadn’t found this work it would have been very difficult. We did everything together. I feel like I am helping others in his memory.

Q:What do you miss most about Alan?

CS: His physical presence—we were athletes and musicians together. I miss his music and his humor; it was very dry.

Q: What did his condition teach you?

CS: That we are not our minds or our memories… there’s something else… spirit, love? It transcends the physical and behavioral realms.

At what point did you realize his condition was bigger than you? And when did you know it was time to finally ask for help?

CS: There were several steps along the way. I needed to work part time. So I found Adult Daycare Centers, which I never knew existed, and asked his brother to help out one afternoon a week.  Later he escaped the house in the middle of the night, even through all the locks and barricades I had put up. We have a busy street right out side the house. I didn’t want him to get killed, or have some poor 19-year-old kid have [his death] on his/her conscious for the rest of his/her life. So I placed Alan in a home for the last 1 1/2 years.

Was that a difficult decision to make?

CS: Absolutely. They say that caregivers are more depressed after placement and I can see that was true. Not only do you lose your job, you worry that others won’t know your loved one or care for your loved one in the same way you did, etc. It was also a relief in other ways. Although, difficult to get back to seven years before where I left off my life pre-Alzheimers.

For those who may just be entering the caregiving world, what advice do you give?

CS: Find experts to help and let you know what resources are out there. Having choices is something that most caregivers don’t think they have.

Now that you have had some time to reflect on the experience, would you go back and change anything if it were possible?

CS: I would have come up for air a lot sooner. I considered it a sign of courage to do everything alone. Now I can see that I became short tempered and stressed and my health suffered because of it. I had this rugged, individualistic approach. That may work in other areas but not in caregiving. Now I collaborate on everything I am doing and I get further, faster with a team.

During an interview on Blog Talk Radio, you mentioned that after Alan passed you felt as if you were going to “die from sadness.” How did you cope?

I imagined him hugging my heart so it wouldn’t burst into a thousand pieces. That helped. I also kept him close to me with music and things we used to do together, like running, etc. I keep him in my heart now.

What other activities or therapies made daily life more tolerable?

CS: Support groups and meditation groups for caregivers. I could share my experience with others and we supported each other. I also had a Life Coach who kept reminding me to do my caring on a level that I would be proud of. I never yelled or got short when I used that standard.

When did you feel okay about moving forward with your life?

CS: Right away. I would cry every time I heard music that touched me, but I would do that in the car. Then I would pull it together once I got to a program or a talk that I was giving about my first book. The crying jags gradually got further and further apart, but I still have them.

What’s next for you?

CS: I’m working on a certification program to train Professional Caregiver Advocates to sit with families and support their needs and also create more programs in the community that caregivers can use to lighten their burden. I have a team assembled and we are writing the content. I would love all caregivers to be surrounded by love!

Are there any more books in your future?

CS: No. It feels like more people will benefit from writing the curriculum, in a real world way. I love the two books that I wrote, and I think they help the people going through the caregiving experience. But I want ‘boots on-the-ground’ knocking on caregivers’ doors, bringing them frozen dinners and DVD’s and having a quick chat. What a world that will be!!

Can you share three caregiving tips?

1) Find people to support you. Those who won’t accept “I’m fine” when asked how you are doing. People who can really listen are best.

2) Find others going through the same thing and support each other.

3) When people ask what they can do have a list ready or you won’t remember. Cook a dinner, do an errand, give you a break away from Caregiving, etc.

Have you thought about finding love again?

CS: Yes, my new boyfriend is also an old friend that I’ve known for 28 years. He has Cerebral Palsy and had back surgery at the beginning of the summer. His friends are his caregivers and I do the emotional support this time. He’s a great guy that supports all of my projects and me as a person.

Does Christine’s story resonate with you? What are your caregiving tips? We welcome comments below.

About Christine Sotmary

Christine Sotmary is the first ever Professional Caregiver Advocate. After caring for her husband for 8 years during his early-onset Alzheimer’s disease she realized how little support families get during tough times. For the last three years she has been creating programs all over Westchester, NY, designed to make the lives of Family Caregivers easier. Her dream is to one day train Professional Caregiver Advocates all over the country to help Family and Informal Caregivers link to programs and their communities. Caregiver Access is the beginning of that dream.
She also is a powerful speaker on the many loving lessons that she learned during her 8-year journey of caring for her sweetie. Visit Caregiver Access for more information on Christine, her books and her role as a caregiver advocate.

Jana Waring Helms
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