My reality, at least for now, consists of delusions, time warps, and an occasional white lie. As I support and care for my Mom through her Alzheimer’s journey, her reality becomes my reality. Among the many blogs, scholarly articles, and books that I’ve read on the subject of dementia, most all agree that the best course of action, when dealing with an Alzheimer’s patient, is to enter their reality.
Practice helps but doesn’t necessarily make it easier. I never want to cause my mother pain. Lord knows she suffers enough. So, when she asks about her mother, I tell her that as far as I know, she is doing well. (My grandmother died in 1987.) I see no harm in telling her an untruth if it eases her anxiety. At the beginning of Mom’s diagnosis, I refused to accept the facts: Her memory will slip away; She will lose her sense of time and place; She will become incontinent; and, the one that hurts the most…she will forget me.
When I first met Alzheimer’s, I refused to acknowledge the truth. I lived in denial. It’s easy to debunk the diagnosis when the symptoms suggest typical aging blunders. (If I didn’t need to know what day it is I would forget, too. I can’t count backward from 100 in increments of 7, can you?) This was my argument in the early stages.
Then one day, Mom got lost in Walmart. Mom was in the meat section when I stepped away from her long enough to retrieve milk and eggs. When I returned, she was nowhere to be found. Minutes later, I saw her wondering with her cart in electronics. She was terrified and said, “Don’t you ever leave me again!” At that point, I had no choice but to entertain the possibility that Mom had memory issues.
Reality hurts. My mother will never forget me, I told myself. She will always remember her best friend. I am her child. I am the little girl whose tears she wiped away. I am the young woman she encouraged and counseled when life offered a fork-in-the-road. No, I said. Alzheimer’s will not separate us. We are too close, and Mom is too strong for this to overtake her. She and I will be the exception! Sometimes I wonder how many other daughters believe that this disease will not erase their mother’s memory of them. I’m thinking a lot, especially if they have the same kind of relationship as my mother and me.
Months later, Alzheimer’s wins. The agony of defeat hurts. I don’t try to beat it anymore. I succumb to the realization that Alzheimer’s is a cruel, relentless beast whose weapon of destruction is an eraser. The Alzheimer’s eraser doesn’t remove large chunks of memory. Oh no, that would be too quick and easy. If that were the case, the pain would be short-lived, and the finality of life would come sooner rather than later. Goodbyes happen slow and steady for families who have a loved one suffering from Alzheimer’s. Sometimes, the change happens so slowly that it’s almost unnoticeable. That is until the person says or does something noticeable.
Until recently, Mom’s sweet nature remained intact. Knowing the 7-stages of Alzheimer’s help me understand when Mom enters a new baseline. Mom never used profanity, but she does now. Her new vocabulary erupts whenever she does not want to do something. Nothing challenges my crafty caregiver skills more than bath time. The first time I suggested that Mom take a shower, she flew into a full-blown toddler tantrum. Wow! What just happened? Mom’s sudden change of demeanor demonstrated the severity of her disease. Since this episode, there have been others; but, because this was her first meltdown, it is by far the most memorable.
Since the battle of the bath, I now use a more subtle approach. I no longer use the words “bath” or “shower,” as they create unpleasantries for both of us. Now, I tell Mom that I’ve planned an outing that we need to get ready for and that she should “shampoo her hair.” Then, I tell her how pretty she will look after I fix it for her. So far, it works. (How long I can get away with this technique is yet to be seen.) With the curiosity of a child, Mom asks where we are going. I tell her it’s a surprise and that it will be fun. Usually, our outing, weather permitting, consists of a walk outside of her facility. We enjoy a somber-paced stroll, stopping long enough to admire the colorful blooming foliage. When the weather doesn’t cooperate, we tour the inside, ride the elevator, and admire the artwork that hangs on each floor. It doesn’t matter that we’ve walked the halls numerous times; to Mom, it’s exciting and new. Simplicity creates memories; and for that, I am grateful.
The caregiver’s role consumes, takes time, exhausts, and rewards. It’s a reality I never expected. Another obstacle I face as Mom’s caregiver is guilt. Guilt nips at my conscience almost daily. Even though I do all that I know how to do for my mother, guilt gnaws at my innards like a starved, homeless dog. I want to move forward. I know I need to. However, there are days when guilt won’t let me. I feel guilty when I leave her; I feel guilty when I enjoy myself, especially when I laugh; and, I feel guilty when I don’t know why I feel guilty. It’s always there, relentless.
I recently read an article in Next Avenue about caregiver burnout: “When the Caregiver is Sicker than the Loved One,” by Toula Wooten; June 27, 2017. I felt like a wet rag slapped me across the face when I read: “According to Stanford University, 40 percent of Alzheimer’s caregivers die from stress-related disorders before the patient dies.” Wow! How’s that for a reality check? 40 percent! Almost half! I think about that statistic often.
At any rate, spending time with Mom today is more precious to me than yesterday. I do what I can for her today and let tomorrow be whatever it will be. I know that in the end I will look back and have no regrets; at least, I hope not. My mother and I are making a beautiful movie of memories. Someday I will replay our movie again and again in my mind’s eye. As my mother’s caregiver, this is my prayer, my hope, and my reality.