Changing Roles: The Care Partner’s Journey

We all play multiple roles during our lifetime. These roles can be a care partner, sibling, parent, grandchild, student, peer, employee, artist, gardener, friend, and the list goes on. While on this dementia journey we frequently get stuck in the role of the care partner. Stuck in a place that does not allow us to live fully alive. Stuck in a place that can cause us to become disoriented, unfamiliar with ourselves once the role is stripped from us. This puts a strain on us mentally, physically, relationally, and spiritually. We sometimes forget the other roles we are called and created to play. When we are stripped of our dementia care partner role, along with it we sometimes lose the role of son or daughter, sister, spouse. This loss of roles can bring its own level of stress, anxiety, feelings of being lost, feelings of a daunting personal unknown journey and purpose. The grief that enters into our narrative, opens the gates for so many other emotions and thoughts about our own lives as an indivuals and in relation to others in our family and community. The role of care partner often comes without warning, without an invitation, we fight it, play with it, become accustomed to its presence, and then on some unknown day in an unknown way, it is stripped from us as fast as it arrived. If we allow ourselves to remain stuck with a single role, how do we discover the next single step in our lives?

The role of a family care partner is slightly different than that of a professional care partner. We don’t enter into it having prepared ourselves for the role. There is no formal education, internship, graduation, and first job with someone set as your guide. No, it shows up without that training and we must seek it out, oftentimes our experience become the best teacher, and those moments when we feel like we are going to snap, our hardest test. Our graduation, the day our loved one passes away. All of this without being able to clock out at the end of our shift, on 24/7. Has very different tone to it, right? There are many twists and turns to this role, and we cannot watch another person for a character study. Each care partner is on their own track, but all apart of this same dementia ensemble. The cast of your own journey? You, your loved one, your loved one’s professional care team, and Dementia. You play together, working through trials, blocks, and triumphs. You play off of each other, learning each other’s personality, skillset, and needs. You learn how to work in unison in order to walk this dementia journey to the best of your ability. You learn to find the moments of joy, and you find the limits of our physical and mental capability. You are selfless in your acts, and may at times both bless and curse the moment. You give, and sometimes you lose yourself to this single role.

For many care partners, we see other beloved roles stripped from us as we learn more about our role as care partner. Our loved one’s needs increased and we need to spend more and more time with them. We selflessly serve our loved one, only to find ourselves losing the role of a friend, co-worker, even mother, spouse, or father. As dementia progresses and we find ourselves the sole keeper of our shared memories, the role of daughter, grandson, sister, or brother, fade. These roles, of course, are still there, still inside us, still wanting us to create new stories with us as the lead player. As our time no longer becomes our own, our roles as artist, gardener, lay minister, coach, sneak off in the middle of the night. We lose ourselves in the service of another. We selflessly love those who (maybe) once cared for us. This is good, and the family care partners are never thanked enough. Sure it is in some way part of the deal of being a human being and a member of a family, but this journey asks of us things we wish to never ask for, or be asked of during our lifetime. We find ourselves standing alone with our loved one in the story, the only roles being care partner, loved one and dementia.

This is only one narrative of what can be on this dementia journey, and while parts of our society think that there is nothing we can do to improve the balance of roles while caring for our loved one, that simply is not true. We can do many things. We can do little things. We can do great things while still playing the leading role of the care partner.

Over the last year, I have worked on developing the 3-Dimensional Care Partner Project. Some of you have joyfully assisted me with your input and your playfulness, and in doing so prove there is more to this care partner role than we have currently discovered. I want to share this with all of you over the next few weeks a new story, a new narrative, and a new way of playing the multiple roles we were created to play. I hope to spark new thoughts about what you still CAN do while never negating the struggles and demands of being a care partner. This project was meant to be rolled out in phases over the next year, a book, a podcast, a workshop, and a theatre process, but this year has other plans in mind. Starting next week, I will share with you a segment from the unedited book, leading to rolling out this project a new way. It is important to find ourselves again, living fully alive. The question was asked a few weeks ago by the women at Abiding Together, “What titles are you called to live further into? What does growth in those areas look like?” I think these are questions we can all ponder as we enter into becoming 3-dimensional care partners, living fully alive in the roles we were uniquely created to live.