I went to visit my Mother today at Maplewood Care Center, her nursing home. It’s hard to believe she has been there since 2001, and that she asked to move into the nursing home. Who would have thought? Surely not me, Mom was always going to live with us. Nine years in the nursing home has been an incredible journey of friendship, love, and awakening. Never in my wildest dreams would I have imagined my Mother’s path would change my career and my way of life, but it did and I can’t thank her enough for what she has taught me through her illness.
Today when I went to visit Mom it was just prior to supper time. I decided to pick up a Hot Fudge Sundae from Mc Donald’s for her anyways. She loves her Sundaes from Mc Donald’s chipped teeth and all. As I scooped the ice cream with the black plastic spoon that came with the sundae, I was anticipating Mom’s smile once her lips felt the cold. Instead, Mom’s lips popped open and closed around the spoon. I gently pulled the spoon out from the lips that trapped it as the ice cream melted in her mouth. My wrist soon turned to scoop another serving of hot fudge, and I saw Mom winkle her face like crisp dollar bill being scrunched in a powerful hand. Today It was evident the cold was causing her pain, yet she wanted more. I guess the fudge out weighted the pain, for today anyways.
After dessert was gone we went onto the main course. Chow mien, peas and carrots, a whipped fruit salad, all per aide. The baby food texture does nothing for my pallet, but it works well for Mom and she doesn’t seem to mine. Who am I to complain anyways, especially when I know she can’t chew with her dilapidated teeth. As I chatted with Mom and the staff I noticed one of my favorite people was missing from the dining room.
“Where’s Lillian?” I asked.
“Oh she passed about two weeks ago.” One of the staff said in a soft compassionate voice. My heart sunk to my toes. I hadn’t seen Lillian in the past month between being out of town and visiting Mom later at night when she was in her room. I felt horrible I hadn’t looked for Lillian when I was there. My mind raced knowing there was no way of going back in time. I will miss Lillian, she made my heart smile.
Lillian had befriended my Mother, watching and checking up on her throughout the years. When I would come to visit Mom, Lillian would scurry over, grab my hand, look deep into my eyes, and share stories with me. Her soft loving smile positioned on her aged and wrinkled face was one of my favorite things to see. Some days Lillian would sit and visit with Mom and me, other times she thought I was her daughter. On these occasions she would grab my hand, lead me off to a private setting where we could sit next to each other holding hands and sharing stories uninterrupted. Lillian’s crystal blue eyes could calm a tornado and her soft smile framed a strong and amazing woman who was a gift to know. It was just in the last year Lillian started to fail physically losing her balance; needing a walker; which many times she would forget was hers. Lillian was the elder, the wise one on the floor loving and caring for those around her until the day she died. If I’m not mistaken, she recently turned 104 years old. I would have loved to have met her family, but it’s not likely now. I will miss her beautiful crystal blues eyes, her soft fail hands that would reach for mine, and her compassionate voice like that of an angel.
Losing Lillian has made me realize, Mom could go any time. Mentally, I’ve known this, but the loss of Lillian made the thought sink into every pour of my being. One day, there may be no reason to go to the nursing home. Mom will not be waiting for me. She will not surprise me with subtle facial expressions, or a goofy comment, or a little giggle that lightens my spirit. What in the world will I do when the time comes for Mom to pass?
I know many think I should be relieved as I am released from this “Caregiver Role.” They view this journey I’ve been on with my Mother as a burden. But truth be told, I will deeply miss her. I will miss that shell of a body that is all many people see. For me there is so much more to Mom than her shell. I guess I see Alzheimer’s disease like peeling an onion. There are many layers and like the heart of the onion it’s always in the middle and never dies first.
Lori La Bey, is the Founder and CEO of Alzheimer’s Speaks, a US based advocacy group that provides education and support to those dealing with Alzheimer’s disease and dementia. She is also an official Global Ambassador for the Purple Angel Project, the new worldwide symbol for dementia.
Lori’s mission is to deliver programs, platforms and collaborations which shift caregiving from crisis to comfort worldwide. Her training programs are designed for people with memory loss, family and professional caregivers, as well as the public. She is a highly sought after speaker, trainer, and advocate for new delivery systems and attitudes towards those with memory loss..
Here are few of her Dementia Friendly Platforms:
Lori’s website www.AlzheimersSpeaks.com features:
Alzheimer’s Speaks Blog highlighting hope and new ways of care
Alzheimer’s Speaks Radio the 1st radio show dedicated to dementia
Dementia Chats™ Free Webinar Series where those living with Dementia are the experts
Arthur’s Memory Café, a concept La Bey brought over from the UK
International Collaborative Resource Directory for Dementia and Caregiving
Youtube channel has several videos to help people shift their caring perspective
Dementia Friendly Businesses and Communities Campaign
Multiple presentations and training programs
La Bey has been a contributing author in four books and is currently working on two of her own books. One details her personal thirty plus year journey with her mother’s memory loss; the second is her signature story about Betty the Bald Chicken.