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Written by: Mary Brintnall-Peterson, Ph.D., MBP Consulting, LLC, Professor Emeritus, UW-Extension & Caregiver.

For most of my career as an educator I created and taught educational programs based on research and insights from family caregivers, military caregivers and the professional who support them.  Yet my last 18 months as a caregiver to my adult son who has cancer has provided me with first hand knowledge. This knowledge has reinforced what I learned in the research literature and provides a chance to think about by feelings and actions. During my time reflecting, I’ve had several, “aha moments” which are keys to my understanding and coping with my caregiver journey.

The most current “aha” is—Caregiving feels like my life is on hold.

A first blush you might think I’m complaining—maybe I am a little.  Factors which promote the idea that my life is on hold include, moving in with my son in another state, focusing on my son’s needs, doing what is needed to care for my son versus what I want to do, and my life evolves around what my son can or can’t do. During this past eighteen months I haven’t traveled for pleasure, lived with my husband, spent time with my grandchildren or been involved in my wine group, travel club or church activities.

Address What’s Holding You Back

When I first had the feeling of caregiving putting my life on hold, I decided I was in control of what I did or didn’t do.  I recognized my decision to be with my son as his primary caregiver was my way of coping with him having cancer. I need to be aware of what is happening every day and be available to help in any way I can.  With the acceptance of this reality I began to address the other ways I felt caregiving was putting my life on hold.

Since I missed my friends and usual activities, I explored ways to maintain my friendships long distance, find activities locally in which to get involved in or do things I had been putting off.  I thought of lots of things at home I could do but had to think about what I could do long distance or locally.  I had to acknowledge that my life was slowing down and I didn’t have to be on the go or busy every moment to be happy. This was especially obvious when we were mandated to stay home because of the coronavirus.

Find Support Around You

Since my faith is an important component in my life, I decided to explore churches in the area. I went to the local church and believe God was guiding me to that church because I found exactly what I needed at that moment in my caregiver journey. Several members greeted me as I entered the church. After visiting for a few minutes one woman asked if we could have coffee the next week and I met two other individuals who listened to my caregiver story and offered assistance. They invited me to a morning Sunday School class where I found caring individuals who prayed for my son and comforted me. These supports wouldn’t have been available to me if I hadn’t sought them out.  The bottom line is to find something that is important to you, search it out and use it.  The church isn’t the only place you’ll find supports to assist you. Check out the local community center, senior center, nature center, or a group of people that like the same things you do such as mindfulness, yoga, quilting, painting, etc. Unfortunately, you will have to take the lead on getting involved and finding support individuals.

Maintain Relationships

Since being a caregiver, I have missed my friends so I began to think about ways to maintain and enhance my existing friendships.  Since we couldn’t be together physically, I started reaching out and responding to texts and notes from friends. I started a group e-mail of college friends to keep them updated on what has happening and it turned into a vehicle that everyone is using to share joys and concerns. We have tried a Zoom meeting and will be doing another one soon. These are just a few ways of maintaining friendships while providing care for my son.

Take One Day at a Time

I have begun to think differently about my feelings that caregiving is putting my life on hold. I am trying to take things one day at a time and acknowledge how miserable I would be if I weren’t here to be aware of how my son is every day.  I look upon our short trips out, which are few, and walks as if they were the new way of traveling. I am trying to live through Facebook posts of individuals taking trip and pretending I am on the trip. The end of my caregiver journey is unknown, I try not to think about that. Instead, I think about the time with my son as a gift and I love the fact that we are closer than we have ever been. This time will help me get through the future regardless of how my caregiver journey ends. Knowing that is a great comfort! So even though my life is on hold while I’m a caregiver, it’s what I want to do and where I need to be regardless of how long it will be.

So—have you thought about your life being on hold as a caregiver? 

If not, I would encourage you to spend time reflecting on how you feel about that and why you have the feelings you have.  Another important piece is to be a problem solver and find ways to help you manage your thoughts and feelings about your caregiver journey.