Community Counts!

 I'm currently taking a class through the United Methodist Church based on the book "Ministry with the Forgotten, Dementia through a Spiritual Lens" by Bishop Kenneth L. Carder. As part of our assignment, we are to write about a visit with someone with dementia and what we learned from it. I am taking some liberties and writing about my prior experience with my Mom when I first became aware that she was experiencing  cognitive loss. 

My family with Mom during Hospice

I only have to think about my Mom and the period of time about 15 years ago when I was cued into her cognitive challenges to feel that angsty clutch in the pit of my stomach. I talked to my parents daily for years and of course this went on after my dad passed away in 2005. My calls with Mom where always filled with joy, we checked in on each other, discussed Antique's Roadshop and Anne Perry novels. She caught me up on my hometown of Seaboard and I caught her up on my kids. Those calls gave my days comfort and structure. And made my visits home even more enjoyable. I felt I had a clear understanding of just how well she was doing. 

My home community was small and thankfully people paid attention. Mom's banker, Donna Edwards, called me out of the blue. Mom had been to the bank that morning and was very agitated. Mom thought she had left her checkbook either in the post office or the bank and couldn't find it. I called her immediately and she was in tears, something that was out of the character for my easy-going Mom. She was afraid that she had made her bank accounts, and thus herself, vulnerable. In a phrase, she was torn out of frame. 

Then other folks shared details with me. One of Mom's friends told me that she was starting to repeat herself in the Sunday School lessons she taught. As a teacher in our home church for over 50 years, this was a big part of Mom's life in the community. Our small church was sad to see Mom unaware of her missteps. As her daughter, I was crushed. Mom's teaching influenced many lives and she was well loved.

The next intel came from her dear friend (and mine!) and neighbor at that time, Laura Cox. My sister (who has since passed away) had been to the house. Elaine had a spicy temperment and had given Mom a bit of a lecture on throwing out uneaten food that was stashed in her refrigerator. In my sister's eyes, she was doing her best to keep Mom from eating spoiled foods, but as she warmed up to her topic, I imagine Mom got a bit of a tongue lashing. Mom was devasted and Laura caughter her crying after the fact. Laura called me to tell me about it with such love and tenderness that thinking of that call  these many years later still makes my eyes well up with tear. 

These were the three clues that really brought me to the unwanted conclusion that Mom was suffereing from dementia. Her own mother likely had full blown Alzheimer's (a term that wasn't coined yet.) and had lost most of her "self" before I was really old enough to remember her as she had once been.  I have a very early memory of my grandmother fearing the presence of chickens in her bedroom. She could not be calmed. My solution, as a preschooler, was scoop up imaginary chickens and fling them out of the room. Miraculously this succeeded in bringing her peace, but it forever informed me about what dementia ("senility or hardening-of-the-arteries " in those days) could look like.

My greatest fear was that Mom would experience something similar. How could this woman, who had lead her church and lived her faith be stricken in such a way? 

It was the beginning of a 15 year caregiving journey for me. First in a 2 year "shared custody" agreement with my sister and then in my home. I witnessed her cognitive decline in real time but God was meriful and even in the end of her life, though she had lost many capabilities and memories, she was always oriented to people and place. What a treasured gift!

Our class reading and video for tonight was about Christian community. As part of our assignment we watched Sam Well's talk on Being With. In addition to our assigned reading, this allowed me to step back and consider the role community played in my Mom's journey. 

For it was with the aid of my home town and my life long friends, that I was lead to understand what I could not see for myself. And it gave me new insight into the importance of the community of friends she built in Durham and how much they contributed to her life, her feelings of joy and self-worth, and her comfort in my home. God brought Geri Cox and Angelia  Carroll into our lives, who were like daughters to her, and the entire Resurrection and later Elizabeth Street UMC congregations. Friends of mine like Fran Muse, Jo Kitchen, Clara Neyhart, Pam Jaskot, and Anne Hartley made time for her and visited with her. Other friends, like Anne Fleetwood and Charlotte Thomas kept the mailman busy with their cards and postcards. Family from home visited from time to time and she was able to reminisce anew about shared memories. And God brought two caregivers into our lives that cared for mom and me like family, Mary and Maria.   My sons and their wives loved her unconditionally. And I cannot think of Mom's wellbeing without recognition of my husband, who cared for her tirelessly and never once complained about our 13 year house guest. 

So all of this is to say several things. Dementia can be a devastating diagnosis. But God is loyal and He provides. This time taught me that the gift of presence is the greatest gift to be given.  I'm so very grateful to God, my family and friends for providing the comfort that enabled Mom to live her last thirteen years in peace. Thanks to you all. Praise God! 

Even to your old age and gray hairs I am he, I am he who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you. Isiah 46:4. 

The Sweetest of the Sweet!