Role Deprivation as an Alzheimer's Caregiver

I have been an Alzheimer's caregiver for my mom in our home for over a decade, so my life looks very different today than I ever could have imagined. At the beginning, it was easy, although I may not have thought it at the time.

There were adjustments. Some were immediate, but others have ratcheted up over time. It has affected my home life, my work life, my social life - so really, my whole life.

I had to see myself differently as these changes occurred, and I had to prioritize differently. Sometimes, I handle it really well, but sometimes I don't. I'm glad I got some training on role deprivation in my other life, so I recognized what was going on.

My role continues to shift

I saw myself as a wife, a mother, a friend, a coworker, a daughter, and a host of other roles. Now, in my mid-adult years, my role of daughter has to jump to the forefront since my dad died. Even that role shifts more as my mom needs more "mothering" as her activities of daily living are affected.

That is the recipe for role deprivation, which can happen after any big life change. It's the void between who you were and your life now. It's the anxiety that comes from feeling set adrift from the moorings of the former concrete roles in your life.¹

Role deprivation is the sneak thief that takes the joy from the retiree, the new parent who has put their career on hold, and the caregiver who's days are filled with really big diapers instead of really big client meetings.

Who am I now?

When we have a "job" we have status, a recognized reporting structure, and a familiar culture. We have a title, perhaps accolades and respect. There is validation for a job well done and adult conversation.

Now, everything has changed. Our new title is care partner. Will there be a move, a retirement, or a leave of absence to care for our loved one? Who are we now without that job or title? Who are we without the roles that shaped how we saw ourselves?

Coping with loss and grief

We experience loss when we are deprived from our customary roles or have to adjust to a new environment. As a caregiver, I am exhausted from having to think through how to help my loved one do the most mundane things. Like getting dressed, brushing their teeth, or swallowing pills.

There is uncertainty and anxiety about the future and my role. Caregivers can feel helpless when we used to see ourselves as capable. I don't always react well when stressed, weary, anxious, or helpless. I don't feel like my best self. I often don't even recognize the person I have become.

My go-to coping mechanisms can feel out of reach or selfish. Mix in the grief caregivers are experiencing with all of this loss, and its a recipe for crisis. We may lash out, seethe inwardly, or withdraw - we flounder.

How do we adjust?

How do we get our bearings in the sea of this "new normal" again and again?

The first answer is that you don't have to have all the answers. We can embrace the uncertainty and still thrive. We are enough. We are more than a title. We can get so swallowed up by how much we've lost and how nothing is the same that we lose sight of how far we have come! We can embrace the journey by remembering the reason when we feel wrung out: For love, for loyalty, for family.

We may not be the same and may barely recognize our reflection in the mirror, but the new us is stronger, mournful, but wiser. We need to give ourselves time to find our feet again. We have come this far and will go further still. We understand the need for self-care is not selfish.

We are here for you.

What roles have changed in your life and how have you handled it? What role do you miss the most? What is your favorite new role?