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As I pulled into Mom’s driveway, after my five day cross-country drive from sunny San Diego, I realized that I was entering into my old neighborhood of wearied Wayne, PA. The memory of my ocean view apartment in Encinitas was as faint as the cold and crisp reality of yet another new passage in my life. Full circle.
After spending over 10 years in San Diego, coming back home was bittersweet. I was about to experience some of the bitter.
Walking into mom’s house, with Lucy, my 5-year-old boxer, wagging and sniffing behind me, the sight of Mom startled me. I hadn’t seen her in almost 9 months and her decline was apparent. Her hair was messy, her clothes dirty and bland, and her makeup – well, there wasn’t much to speak of. Before Mom got sick, she had a closet full of designer clothes and took immaculate care in her appearance.
Mom was diagnosed with FTD dementia 6 months earlier and my siblings and I thought it’d be best for me to end my 10-year hiatus in San Diego and move in with her until we could figure out what to do. Little did I know that Mom was as lucid that day as I would ever see her.
One week after our arrival, Lucy was able to experience her first snowfall. Snowmageddon had arrived, dumping over two feet of snow. Grateful that Mom lived in a condominium with no snow-shoveling on the agenda, Lucy and I were able to enjoy the fluffy white stuff; if only as a respite from being housed with Mom.
Since my arrival I immersed myself into life with my family and friends, as well as starting a job search, as I had been out of work for over 11 months due to the recession of 2008. The job hunt was going well and within two weeks I had some interviews lined up.
Through mutual friends I had also met someone. He was the kind of guy I swore I’d never go out with; recently divorced, three kids and newly sober. I didn’t think it’d be smart to date him until he had some more sober time. Additionally, I was apprehensive and nervous about introducing him to Mom.
Mom was becoming more and more challenging to be around, especially in public. If you were at the food store with her she had to have her favorite check out lady, Marilyn, at Genuardi’s.
We would wait in line to have Marilyn wait on us and she would tell everyone else in line that she had been coming to Marilyn for the past 20 years and that Marilyn had to wait on us. Marilyn would wink at me because she got it. My embarrassment quickly vanished and I felt comfortable among someone else who knew my world.
Mom had her food favorites; dark chocolate was one of them and she would tell everyone, “I’m a Chocoholic” and then start laughing and tell them that she ate it every day. She also chewed gum a lot and would pop in a new piece every 45 minutes.
She would ask complete strangers if they wanted some gum, and then tell them, “I chew gum all day every day.” We would buy her cases of gum from Costco, only to get a phone call a week later saying she needed more gum. I sometimes felt I had my own personal Rain Main.
“Wal-Mart Sucks.” “I need Gum.” There was no filter in any of her communications with others, especially in public.
Mom’s disease had her calling a basic item, such as a fork, a thingy majingy because she couldn’t remember what it was called. As I understood FTD dementia, it affects the front right temporal lobe of her brain; which is the part of the brain that affects conscious thought, voluntary movement and personality characteristics.
When you are searching for just the right word to say, it’s this section of the brain upon which you rely. Visually, I would think of her disease as a large mushroom that was sitting on her brain and it would continue to grow and grow and get darker and more ominous as the disease progressed. My mom was slipping away from me before my very eyes.
Within a couple months I was able to land my dream job – Senior Associate at an International Executive Search firm in Philadelphia. Working for the number one company in my industry was a big coup for me as I was used to working for smaller firms in San Diego. I felt like I had hit the Trifecta - I was able to be present and loving for my Mom, I was dating a pretty fabulous guy and I landed a sweet gig.
Pretty good for someone who drove cross country a mere three months before crying from San Diego to Arizona not wanting to come home.
As Mom’s disease rapidly progressed, Mom became very loving and liked to kiss everyone, especially my boyfriend and she would make a point of kissing him during each visit – usually on the lips! He took it well and never made me feel like my Mother was a burden.
Mom’s memory was also vivid from certain areas in her life and she would regal us with stories from her childhood and early adulthood. Most of these stories I had never even heard before, so it was all very eye-opening to me.
I was taken aback sometimes with some of her questions. Two months into dating Liam, she kept asking me, “Do you think you’ll marry Liam?” “Do you and Liam have sex -- how many times a week?” She would then tell me that she used to have sex, but not anymore.
I would chuckle and call my sister, “Can I tell you what Mom is asking me about now?”
When I’d relay it to her, she’d reply back, “Oh she asked me the same thing last week, but it was at her monthly lunch gathering with her Bridge Club friends!” Luckily for me, my Q&A's weren’t as publicly embarrassing.
By the time summer came around, my career was in full swing, Liam and I were planning on moving in together, and it was time to move Mom into an Assisted Living facility.
One evening after I came home from work, I found Mom in her bed watching TV. It was around 6:30 pm, and she was wearing the same pajamas from the past two days, I came into her room and she was very excited to see me.
“Hi honey bunch!” she looked a little glassy eyed and I didn’t get the sense she had showered recently. I walked into her bathroom and felt her toothbrush -- bone dry.
As I glanced onto her bathroom wall, I noticed brown smear spots dotted along the side of the wall. The stench of feces was apparent. I then could see it clearer; it was on the wall, the floor and smeared all over the toilet. I froze. I wanted to vomit.
I walked back into her bedroom and asked her what happened, she replied, “Oh yeah I have that thingy.”
I replied back to her, “Mom, there is poop all over your bathroom. What happened?”
She gave me a blank stare, “Oh its fine, its fine.” I tried to explain to her that it wasn’t fine. I then called my siblings and shared what had happened.
A month later, we moved Mom into Sunrise Assisted Living facility in Paoli. I moved into an apartment with Liam one mile away. We knew this was the beginning of the end. What we didn’t know was how long Mom would be there for.
How much worse will this disease progress? How long until she doesn’t know our names anymore? How much more time do we have with her? These questions swirled around my head daily like a marble circling a salad bowl, around and around.
My siblings and I had started going to the local FTD Dementia support group for caregivers. What we found there wasn’t promising, more so it was sad and just depressed us even more. We also learned that although Mom was 68, there were many other patients that were much younger; 55, 62, 64 I guess we should feel lucky. However, there was no luck in a world with FTD Dementia.
Mom’s condition rapidly declined and by early spring, she had a physical and mental setback that forced her into the realm of not being able to speak. We thought she had had a stroke, but her disease was just quickly progressing.
On Easter Sunday, my now-husband and I went to visit her with some Easter flowers. She had since been moved to the Memory Care ward at Sunrise and when we arrived, she was sitting in the group room and staring at a TV.
When she saw us there was slight recognition of who I was and she smiled. She knew. We took her hand and walked outside onto the small terrace with her for a few minutes. We continued to circle the terrace and made small talk with her about Easter and the weather. She looked at the ground and every few minutes us would glance up toward us and smile.
We continued to circle the terrace and then made our way back inside. Still holding our hands, gripping each finger so tightly, like a newborn grasping, we went and sat back with her inside.
As I’ve said, she really liked my husband, so much so that she wouldn’t let go of his hand when we sat down and wanted to leave. It was sweet. I was grateful for that moment. It was a good moment.
She smiled and waved good-bye to us as we left and I was able to give her some Easter flowers; just like normal.
It was close to midnight and my phone was on vibrate in the hallway charging. Drifting off to sleep, I heard our front door open. My sister entered our home and started calling our names out: “Nance, Liam, It’s me.”
Dazed and confused, we awoke to see her standing in our bedroom doorway; her silhouette was all I could see. All I could hear was “Mom died, she’s dead.” I burst into tears.
Mom passed away due to heart failure. She was 69, I was 45 and I will always be grateful that I moved back home for her. And for me.