Caregiving in Tandem

Although it was ten years ago that my mother passed away, I still find myself reflecting back on those final years. She lived with my older sister in a small town in northeastern Ohio. So we would only occasionally see her when we traveled back, or she would come to the west coast for visits. She began experiencing memory loss, which gradually became an increasing concern for my sister who was witness to all of the symptoms. She understandably wanted to be the force that addressed, and dealt with the many challenges. This situation was further complicated by the fact that my niece was living there at the time too. She and my sister felt a strong sense of obligation, and moral responsibility to take care of mother on their own. They wanted no training or guidance on dementia. Surely, this is an all too familiar story. As it played itself out, I began to recognize that the stars were in good alignment for us, because my sister and I played complementary caregiving roles. In other words, my sister continued to be the primary caregiver for my mother, as I slowly moved into the caregiving role for my sister.

In our early telephone conversations about the challenging behavioral changes that were taking place, it became evident that my sister needed a little nudging to take that essential step to seek out a community for mother. Somewhere she would receive professional care on a 24-hour basis. I regretted not being on hand to help my sister; however I was able to be helpful in another way. The time gaps in my visits allowed me to more clearly see the changes in mothers behavior. I would share these observations with my sister, gently and gradually, because she was focused on taking each day as it came. She never had the advantage of being able to step back, and see the bigger picture.

I have to confess to the additional advantage of being able to listen to my wife, Sylvana. She has a lengthy experience in long-term care, and has heard many stories about the challenges faced by caregivers, near and far. This insight was very helpful to me, because it enabled me to better articulate where mother was at any given point. This perspective also gave my sister the comfort level she needed to make what were clearly a series of difficult decisions, and better adapt to mother’s behavior.One example that comes to mind took place at an early visit, when I was a little taken aback listening to my sister correct mother about dates of specific experiences they had shared. On the way home, I spoke to my sister about the importance of living in the moment, and accepting mother’s version of reality. She said she really hadn’t even realized she was doing that to mom. After this was brought to her attention, she noticed that their conversations were beginning to have less tension and more flow. I’m very thankful my sister was on the scene as the primary caregiver. She has made the same point, about the value of the input Sylvana and I provided from a distance. This joint effort gave us the needed strength, balance, and perspective to do what we wanted most be the best caregivers we could for someone we loved.