I am just weeks into my second to last term of grad school. This term in my advance practice class we are doing family of origin work. The idea is that we are exploring our family history and how it impacts the work we do. Hopefully, the goal is, as we move forward in our practice to be aware of where working with individuals may be hard and where we might experience transference and counter-transference.
I am not sure why I thought it would be such a great idea to sign up to present first or why I chose to talk about Alzheimers, but I did. So this afternoon I am presenting my family genogram and talking about how Alzheimers has impacted my family. Below is the narrative I wrote to share with my peers. It's going to be a bit intense today around 1pm, so if you have some extra positive energy to send my way, I would truly appreciate it.
“Alzheimer's is a brain disease that causes problems with memory, thinking and behavior.”
As long as I can remember Alzheimers has been present in my family. My great-Grandmother on my mom’s side, Mama Chinn, had it. My maternal grandmother, Grandma Thomas, has it. My paternal grandfather, Grandpa McClelland, had it.
I don’t have any real memories of Mama Chinn. Everything I can think if is just a story that was told to me by my mother and grandmother. Mama Chinn was put in a care facility when I was very young as the dementia made her too difficult to care for. I remember hearing my Grandmother talk about how hard to was to visit her mother. Mama Chinn would ask my grandmother where her daughters were and tell her that they never came to visit her. My grandmother would just sit there, holding her mother’s hand and listen. I remember hearing that Mama Chinn had gone into another woman’s room and tried to help her get dressed. The other woman didn’t want her help and tried to get Mama Chinn to stop, so Mama Chinn pushed her. The woman fell and broke her hip. Mama Chinn had to be moved from that facility because they felt she was a danger to the other clients. It wasn’t much longer after that, that Mama Chinn’s health began to fail and she eventually passed on.
“Alzheimer's is the most common form of dementia”
“Shit, shitshitshit. I can’t believe I did that.” She stared at us, me 16 and my brother 12, looking completely confused. “Did you read the tags right?” We did. The gift I had wanted was sitting unwrapped in my brother’s lap and I was holding his. My mom started to cry. “I can’t believe I did that. Did I really do that?” Through her tears and quick breaths she managed to tell us that she had thought she had done good this year, labeling everything as she went along as to not forget. We didn’t think it was a big deal. In fact we thought it was pretty funny. We’d gotten what we wanted, we gotten to open gifts – so what if it was the wrong one. But even then, I knew what she was afraid of. She didn’t have to say it out loud. It was the white noise always present in the background – whispering, when will I start losing my mind too.
“Alzheimer's is not a normal part of aging”
I did not spend a lot of time with my mother’s parents growing up. When my mother met and married my father, a military man stationed in DC, she knew that one day she would be living across the country from her parents. My mom tried to get us out to see her family every few years. As we didn’t get to see them as often, we were the spoiled grandkids. My grandmother could never remember our names. “Melis, er, Steph, er I mean Olivia,” was a common cry down the stairs into the basement. As I got older, I would tease her, trying to evoke a smile out of her often cranky face. She would mumble something about too many girls and usually give me a mischievous smile. As time passed, the opportunities to head east became fewer. I kept up on her through emails from my Grandpa and the occasional phone calls usually around the holidays. My mom would tell me stories of Grandma’s memory deteriorating and the concerns she was having for my grandmother’s safety, often fighting back her own tears.
In my late twenties I would end up making two trips with my mother back to her childhood home. The first trip was to support my mother as she and her sisters had a very hard conversation about moving, with their parents. A little over a year later, I would go back to help my mother begin the packing process. I don’t think I have ever laughed and cried so much in my life. In the time between visits all memories of me had been erased from my grandmother’s memory and she had to be reminded who my mom was on nearly every occasion.
I felt so much sadness and fear. First my great grandmother, then my grandmother. Did that mean my mother would be next? The thought of losing her, or more accurately, her mind losing me is one of the most terrifying fears I have.
“Alzheimer's worsens over time”
“Hugh, now stop. Sit down in your chair, you can’t walk without your cane you know that.” My Grams was forever yelling at my grandpa. They had been taking care of each other since she was 15. He had made sure that she had a roof over her head and food in the pantry and she made sure that their house was a home and food nourished their family. They were best friends. I have no memory of them ever saying a hurtful thing to the other. They spent their life together getting by and were fortunate enough in later life to have some financial resources that allowed them to finally play together. They would crawl into their RV and travel the west coast, stopping wherever they wanted. They played cards all the time and sat in their recliners devouring books together. They had a lovely life together.
In my late teens, it became apparent that my grandfather’s mind was starting to fail. My grams would wake in the middle of the night to find him in the living room preparing for a job he’d retired from 15 years before. She would yell at him, half in anger and half in fear to go back to bed. We all witnessed his deterioration and worried about them both, but Grams was dead set on caring for him. As the dementia increased, it was Grams who got rid of his hunting rifles, hid the keys to the car, got child proof locks on the doors, bathed him, cared for him and was there holding his hand when he finally succumbed.
I look back know and have no idea how she did it for so long. The love, strength and fear present for her over the last 8 years of my grandfather’s life as he slowly pulled away from us all in mind and eventually body, is amazing. To this day, she says she wouldn’t have done a thing differently and still thinks of him every day.
“Alzheimer's has no current cure…”
I watch. I watch my dad. I watch my mom. I watch myself. I swear, you never told me that. When did we talk about that? Damn it, where did I leave that dot dot dot? When my mom or dad launches into a story that they have told me in our last conversation, I wonder is it just forgetfulness, or is this a sign?
Last year I did my practicum at a continuing care facility where I worked with people who were experiencing the beginning stages of dementia, and were in the process of transitioning from independent living into 24 hour care and their families. I learned a lot. It was a great opportunity to have honest frank discussions with my partner and my parents about what they want as we all age. It felt empowering to be able to walk down this path a number of times with families each trying on different emotions. I want to say that this opportunity lessened the fear of the possibility of what’s to come, but really it didn’t. I am still terrified when I think about the chance that my parents might lose me, long before I lose them.