My friend has cared for her mother in her home ever since her mother suffered a debilitating stroke. Her condition is now further complicated by a nervous system disease that has left her completely unable to care for herself. Only her mouth works and you can never tell what her mother might say or what kind of chaos she might create in their home.
A national survey that looked at people 70 years of age or older found that 44 percent of Latinos receive home-based family caregiving compared to 34 percent of blacks and 25 percent of non-Hispanic Whites. Several of my black American friends are caregivers in their home.
This got me to wondering whether cultural perspectives differ across ethnic groups and impact caregiver experiences. In the culture in which I grew up, it was not our family practice to place members in nursing care. The reasons for this are not the subject of this post. But what my friend is experiencing is not particularly unusual if the conclusions of this study can be believed.
I regularly call my friend because she soldiers on. She complains about not sleeping, says she is too tired to exercise, and admits she has not seen her primary care doctor. I fear she will drop off my radar.
So not only is she responsible for her own health, she is also responsible for ensuring a sense of serenity in her home. She must manage interactions between her mother who frequently goes rogue with the help. She has to keep the live-in aide, who is principally responsible for her mother’s care, happy. Her two adult sons and a childhood friend who temporarily has nowhere to stay joined the family and each of them have their own issues personally and with each other.
You would not think there would be that much to monitor given there are no small children in the home. But in fact, the dynamics of this family home care arrangement can sometimes be volatile and chase serenity far, far away. She has called me to intervene when she is in a business meeting and cannot get home.
From my own life I know that caregivers experience a range of emotions from grief, anxiety, guilt to grief. I check in often because I am looking for ways to help her. But it occurred to me that she might not want what I think she needs. Rather than assume, I decided to ask.
I was a little surprised to learn the thing my friend misses the most is time alone. She went from solitude to zero privacy when her mother moved in and her life changed. So intellectually she may accept an invitation to go to a movie. But what she really wants is to be alone. Her second wish is to have a shoulder to cry on or an ear to listen to her on those days that she wants to vent.
So while I continue my regular calls to her three or more times per week to say ” I am here for you,” I now realize my job is to give her what she wants. She will decide what she needs to maintain serenity in her home and her mind.
I am a paid member of AARP’s Kitchen Cabinet on Caregiving but my opinions are my own. The AARP Resource Center is an awesome resource for those engaged in caregiving and is especially helpful to those who are new to caregiving.
Karen D. Austin says
Thanks for writing about the caregiver experience. I haven’t walked that path yet, but I am watching others do that. And my studies in gerontology has included several books written by caregivers. Being recognized seems key–as well as some respite time. Karen (from #GenFab)
Patricia Patton says
Hello Karen
Thank you for stopping by BoomerWizdom. I am happy to learn that you write on this topic and so are quite familiar. AARP has a huge amount of information. I shall keep my eyes peeled and pay attention to what http://www.thegenerationaboveme.blogspot.com has to say. And no rush on walking this path, for sure.
Sharon - MomGenerations.com says
This is a very powerful, emotional post. When I was caring for my Mom in my home for an extended time (rehab) after a hospital stay, I lost all sense of personal self. Every moment was filled with phone calls, rehab/PT people coming and going, physician visits, not to mention the on-going, daily care that my Mom needed from me. My Mom is easy and engaging and I love her dearly; she did not want all of this, but every moment was necessary to help her regain her strength and independence. I, too, needed space and time, however brief. I was blessed to have a daughter live close by who would come with her very small children to keep my Mom company while I went for a short run, to the supermarket or just to grab a take-out coffee. It’s difficult for both caregiver and care recipient, I think. Both are seeking their “real” life, their “other” life, and the boundaries are so blurred and so uncharted. It so often causes stress beyond belief. Your friend is very blessed to have you. Thank you for this post…
Patricia Patton says
And thank you Sharon for reading and commenting. It means a lot to me.