I subscribe to an online caregiver site that is full of legal advice and encouragement for caregivers. AgingCare.com has been a wonderful source for advice and moral support for several years. I especially enjoy reading the personal accounts from other caregivers. Although we are in different locations and situations, we have so much in common. One of the articles this week was written by an online blogger who shared her struggles with protecting her mom’s dignity. It echoes many of my own concerns.
Her articles are called “Saturdays with Mum” and she remains anonymous in her writings to preserve her mother’s anonymity. She calls herself “Middlename Jane.” Her mother feels a self-imposed shame that comes from dementia so she refers to her as “Mum” or “E.” Middlename Jane came up with a list for herself that would guide her writing:
I decided to include:
- nothing unkind, unfair or untrue;
- nothing identifying my mother or others in her life;
- everything about being a daughter, friend, advocate and part-time caregiver;
- everything about trying to do better in these roles and help others too;
- everything about what my mother would support and agree with; and
- nothing that she would be embarrassed by if she were her healthy, fully-functioning self.
I didn’t articulate that list when I began writing, but I hope that I have held to it, save the second about identifying her or others in her life. I won’t give away the whole article in case you take the time to read it here. What resounded with me was her mother’s response to her confession about the writing. “You have to keep telling the truth…the real truth….about the hard things. About dementia.”
As I held this lens up to my own writings, I realized that I have sometimes skirted around the hard things. Since many of you know Mom, I’ve been using the idea of protecting her, Dad, and, yes, even me, to keep me from sharing the real truth. My sister, Carla, acts as my editor so she is always aware of what I write. Others family members and close friends read it faithfully, too. I would never want to share anything that would embarrass any of us.
But what if I am missing the words that should be spoken? Isn’t that part of why I am writing week after week? Many of us are in the same boat, but we feel alone because caregiving is such an isolating task. It seems the world goes on, not noticing our absence, while we tend to those entrusted to our care. What if I am holding back the very words that would speak peace or encouragement?
We are not alone. Although there are so many seasons in life that are isolating, we are not ever truly alone. There are support groups that affirm that for many different groups of people. As caregivers, many of us cannot get away to a meeting or are not willing to share our precious free time, so I cannot use the ruse of privacy to shelter us. Dementia is terrifying and disturbing and real. Those who are walking or have been down this road know that.
I don’t know that my future writings will be any more revealing than the past. I do know that my lens has shifted because of Middlename Jane and her Mum. I will endeavor to be more open and tell the real truth about the hard things. Understanding the struggles of caregiving is difficult for those unaffected by the disease, but it shouldn’t be shameful or isolating so I will continue to speak into the void.