Lose the Shame: We’re All in This Together
Our society straight up amazes me. I see young female celebrities (so-called “influencers”) strutting about with their “bubble breasts” popping out all over; their pumped up lips pursed in inviting manner, while “Clothing optional” seems to be the rule, meaning they seemingly have no shame in exposing their nether regions. The only thing covered is their every move by the paparazzi. Yet, folks seem to be easily embarrassed about other things…Cognitive impairment, for instance. Today, I guest-speak to audiences, based on my life experience as 15 year Caregiver to my husband, about which I write in my book–“Az and Me: A Partner’s Journey with Alzheimer’s.” By documenting our experiences, I hope to save others from falling into the same traps I did. It’s not the first time I address tough personal subjects with which I struggled. Appearing as Cover Story in Providence Journal Sunday magazine “Lifestyles,” my story about my own breast cancer, mastectomy, and reconstruction ran in Dec. 2004. I “came out” in this piece, laying bare the fact my breast was amputated (skin-sparing mastectomy) and reconstructed by surgeons. When the first reconstruction (a simple implant) wasn’t the result I’d hoped, I underwent a 2nd reconstruction, called latissimus dorsi,” whereby the surgeon harvested back muscle, bringing it to the front and tethering it. Voila—He created a breast. Now, this revelation might be waaayyy too personal for some but my purpose is to alert others so they don’t repeat my mistakes. I’d have preferred my plastic surgeon tell me in advance why the first surgery might disappoint, and why latissimus dorsi might be preferable, thus offering me a choice. Instead, I endured two surgeries. It wasn’t lost on me, either, that he was paid for two procedures. From that, I learned to ask what are the possible negative effects of any procedures. But, speaking of shame, I see a great deal of it in the arena I occupy now— Alzheimer’s and cognitive disability. Too many Caregivers feel the need to speak of Alzheimer’s and other cognitive diseases in shrouded terms. If their affected mate is within earshot, they whisper the words, sure the full-throated mention of this illness will provoke embarrassment in their mate. I have not seen that reaction in my husband who’s had the disease for 15 years. In fact, when he was concerned about his decline, early in the process, I simply said “Look, as we age, we lose some strengths and gain others. You’re better than I am, physically, and I’m better cognitively. The good news is: Together, we make a pretty good human being.” I believe if the Caregiver doesn’t demonstrate shame, then the one who is cognitively impaired won’t feel shame, either. In public, I’m open about Paul’s disease. If I need to bring him into the women’s restroom for an emergency visit (he is no longer independent in this self-care), I announce we’re there, as I enter, so no one will be shocked, coming out of a stall. I also explain my husband has Alzheimer’s. Cognitive disability in any form should never convey shame but strangely enough many in our society seem to think it does. I refuse to give in to that false narrative and I work to give others the freedom to acknowledge the disease in their loved ones. This journey as Caregiver to the cognitively impaired is simply too hard without our setting up unnecessary roadblocks. As I said at the top, we’re all in this together—or we will be so in the future. ***If you find these posts of value, please share with others who face similar health difficulties in their loved ones. Colleen’s new book “Az and Me: A Partner’s Journey with Alzheimer’s” (on Amazon), is a guide or manual, based on her 15 years as sole Caregiver to her husband. In it, she offers valuable tips and suggestions…photos…and poetry (by Colleen). She infuses many of her short chapters (1-2 pgs) with her trademark humor. This book is backed by three RI Top Docs and is heralded by many (see Reviews on the Amazon site where the book is sold). Contact Colleen (colleenkellymellor@gmail.com) if you’d like to comment on this post …or to have her speak before your group. And learn more at her website—colleenkellymellor.com. #Alzheimer’s Caregivers #Caregivers #Alzheimer’s #Disease shame |
