Living into Guardianship

by Ann Gugger, Private Guardian

The National Center on Elder Abuse asked various types of guardians to share their experience of being a guardian and offer advice for other guardians. We are delighted to share the first of two stories. If you would like to offer your story of being a guardian, please email us at ncea@med.usc.edu.

Our first guardianship story is from Ann Gugger. Ann is guardian to Carie who lives in a L’Arche Community. For more information about L’Arche, please visit L’Arche USA.

Carie was 14 years old, and I was 22 when we met in 1987. We had both just become members of L’Arche Tahoma Hope, a community that is part of the international federation of L’Arche communities. L’Arche was founded in France by Jean Vanier. Its roots were simple – Vanier answered the call of two men with intellectual disabilities in need of a home. As the three shared day-to-day life, Vanier was touched by his growing awareness of his own vulnerability, and the mutual healing and support that transpired as their relationships deepened. Following Vanier’s example, L’Arche communities invite people with and without intellectual disabilities to live and work together, creating relationships of mutuality and respect.

 

L’Arche has had a profound impact on people around the world fortunate enough to be touched by it. Carie and I both count ourselves among them. I was an assistant in L’Arche for three years. In a way, Carie and I grew up together; from our somewhat impulsive and volatile teens and twenties, we are now more settled and mature, finding a place of belonging in our community. Although I make my home with my children and partner these days, I have held various roles in L’Arche over the years. L’Arche tries to ensure that any person that needs a guardian has one. In 2008 I was honored to become Carie’s guardian, and a little daunted by the responsibility. To me, being a guardian means being an active participant in Carie’s life, and welcoming her more deeply into mine. I sometimes help Carie shower and dress in the morning (accompanied by cups of Starbucks to honor our shared love of coffee) and attend medical appointments and meetings with her caregivers. Carie is a regular at our holiday table and family events, over the years taking in the mayhem created by three energetic children, and sharing with us the grace of her unique way in the world.

Carie is unable to speak, at least with her mouth. She communicates by blinking, and by listening. To sit with her for any period of time is to learn that Carie is an expert listener. Recently, Carie has struggled with health issues, some the natural progression of her physical and developmental challenges, and others collateral damage, like a recent infection after a hospitalization. She has had to be exceptionally patient, and to endure a lot of uncertainty. And she and I have had to have conversations about changes to her care that could be challenging for her or those supporting her.

Carie is a model of groundedness. She knows herself. I have been impressed, time and again, when I talk to her about her changing care needs. I have her rapt attention, and she is clearer about her answers at those moments than at any other time I speak to her. Knowing herself seems to give her the ability to live with a dignity and graciousness that is humbling and inspiring, and to be patient with the rest of us as we stumble along the path of trying to meet her evolving needs. I am eased in my responsibility by knowing that I can turn to her for guidance because she so often seems to know what she wants or needs.

Like L’Arche’s beginnings, my advice for guardians is deceptively simple. Treat the person entrusting you to help them like you would want to be treated. Give that person as much dignity and autonomy as possible. Ask, even if it’s a hard question, or even if you think you already know the answer, and then listen to the answer as openly and completely as you can. It may surprise you.