‘Who are you? I don’t know you and I’m really scared,’ she said, shaking. She was crying now. I was her baby, her best friend.’: Woman shares painful Alzheimer’s journey, ‘Nothing prepares your heart for the day your mom doesn’t know you’

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“My mom and I had a special bond when I was little. As the youngest of four girls, I got to spend more one-on-one time with her. While my older sisters were busy with sports, boyfriends, and wrapped up in their own drama, I got to be my mom’s little sidekick. I loved it. She even taught me this crazy game to read her mind, and she could read mine. We practiced every single day, and we got so good at it, it became a party trick that annoyed the heck out of my sisters and dad. My mom sent me to ballet and came to every performance and recital for ten years. She really enjoyed my dancing. We were very close.

Then, when I went to high school and became a crazy teen, I got into partying and my friends became my main focus. My mom, like any normal mom, wanted to keep me safe and was really becoming strict. Our relationship was strained because in order to do the things I really wanted to do, I had to lie to my mom all of the time and I was in trouble almost every weekend for four years! I was drinking alcohol, smoking marijuana, and honestly having a really good time, and that was all that was important to me.

My mom and I had lost our connection, and she was wildly disappointed in me. I wasn’t her little ballet-dancing sidekick anymore. I had been replaced by a lying, beer-drinking, pot-smoking jerk! We still had one thing that was very special to us and that was her mother, my grandma. She lived a few blocks away from her most of my life and through all of our turmoil, my grandma always kept us connected because our love for her was so deep. I realized around eighth grade that my grandma wasn’t quite herself anymore, she was forgetting important dates, names, and getting lost all of the time. What I did not know is that she had already been diagnosed with Alzheimer’s disease. So by the time I got into high school, she was already fairly progressed into the disease

Many people think Alzheimer’s disease is a memory disease, and while one of its symptoms does impact memory, it is so much more. It’s a family diagnosis because it will impact every single member of the family. Even though it’s considered a terminal diagnosis, it doesn’t usually take its victims swiftly. In the case of my grandma, she suffered for thirteen years. It starts with your memory, but Alzheimer’s is really brain failure. It’s like someone spilled water on the motherboard of the computer and everything is misfiring. Symptoms besides memory loss include paranoia, anxiety, depression, insomnia, agitation, anger, and the list goes on and on. This disease takes your memory, then your ability to talk, walk, and so on. Alzheimer’s disease is the worst kind of thief because it is so greedy, it keeps coming back for more and more of who your loved one was until they are a shell of who they used to be.

Courtesy of Lizz L.

I always enjoyed time with my grandma, even as she grew sicker. Often, I would go pick her up and take her for a couple of hours so my grandpa could get things done. We would go for walks, go shopping, get ice cream, or even just talk. I did not realize at the time how helpful this was for my grandpa to get a break from caregiving. He always looked so exhausted and ready to give up, but by the time I brought my grandma back, he was ready with open arms to love and care for her again. To watch my grandpa care for her was a real life lesson in unconditional love. He was the most patient man. As a teenager, I don’t think I was capable of understanding how incredibly hard this was for my own mother. She was one of my grandma’s other main caregivers and I can only imagine the stress of having a wild teenager, a sick mother, and all of the sadness that goes with losing your mother to Alzheimer’s disease.

Through my twenties and early thirties, I continued to disappoint my mom. I was over one hundred pounds overweight, drinking very heavily, extremely lonely, and just floundering. We did not have the relationship my other friends had with their moms that I envied. There were no daily phone calls, shopping trips, or lunches. I was basically maintaining the same lifestyle from high school. I was prioritizing what I thought was ‘having fun’ over relationships, health, and family. I was the loneliest person you could ever meet. I often thought about ending my life. All of my old friends were able to balance partying with getting their educations, finding love, starting families, and ‘growing up,’ while I was just becoming a burnout.

In 2008, at my proverbial worst, I met my soulmate. I was the heaviest I have ever been and the most depressed, most unhappy, and most unhealthy. To say that I felt completely unlovable would be an understatement. Yet somehow, our spirits connected and he saw something in me that would bring us together in a way that helped me experience unconditional love like I never had. I finally let my guard down and let him in my heart. We fell very much in love. We married in 2009 and had two kids by 2011.

Courtesy of Lizz L.

My mom called me out of the blue one day and asked if I could help her make a hair appointment. This was odd to me for a couple of reasons. One was, my mom never asked me for help and the other was my aunt had cut her hair my entire life. I didn’t think too much about it at the time. I made the appointment and was even more shocked when she asked if I would meet her there. We just were not that close. My mom was kind of reclusive and even though she enjoyed time with my kids, she had never asked to spend time with just me. When the day of the appointment arrived, the situation became stranger to me. She asked me to choose the style–again, very uncharacteristic for my mom, who was normally very assertive. I did, and then she allowed the stylist to apply makeup after the haircut. It strange to me because my mom was not someone who wore makeup. She even bought the brow gel the stylist used and asked me to help her apply it for an upcoming event. After the appointment, my mom and I had lunch at the Nordstrom café. I couldn’t help but think as we sat there, this was what I had wanted my whole adult life: a day like this with my mom. It was wonderful, but something wasn’t right.

Finding love and having a family were my two biggest wishes, but in June of 2013, I realized I owed my two small children and husband–but most importantly myself–a healthier version of me. I also was beginning to realize something was wrong with my mom, even though no one was talking about it. I started with small changes, like quitting drinking, then moved on to diet and exercise. I got therapy to work on things that had gotten me to be 275 pounds and I finally started to realize the importance of self-care. I was able to lose 120 pounds and become much healthier. My mom was really proud of me for the first time in a really long time because she knew I was finally living up to my potential. I always felt my mom’s love, but I also always knew she was very disappointed in me for my unhealthy lifestyle. It was very rewarding to feel her fully embrace me again.

Courtesy of Lizz L.

Things were also starting to be different with my mom. She was losing personal items, getting lost, forgetting names–but most notably, her personality had completely changed. My mom was a very inhibited person, very shy, quiet, and buttoned up. She was someone who was always very aware of what others might be thinking about our crazy family and she was very serious. She started to become very outgoing, almost silly, extremely friendly, and affectionate.

My mom was only in her mid-sixties, so my sisters, dad, and I did not want to believe she could be getting sick. She was just getting to the good part of her life. She was retired and happily spent her time volunteering as a CASA and mother mentor. She was a nana who was having great-grandchildren, living in her dream home, and she and my dad had finally achieved financial success. These were supposed to be the golden years.

Courtesy of Lizz L.

One day we were sitting together and out of nowhere she looked at me and said, ‘What if I have IT?’ We both knew ‘it’ was Alzheimer’s disease. My mom had never brought this up before and I was very uncomfortable. ‘Well, we will get through it together, Mom. There are medications you can take to prolong the symptoms from coming on now.’ My voice was shaking. This was uncharted territory. ‘I don’t want that diagnosis. Once you get it, everything is taken from you. Your dignity, your freedom, your identity. No one will ever look at me or treat me the same again.’ She would not make eye contact with me. Her face was red and her neck was blotchy. ‘I will help you. I have been doing research and I know where to take you. You can steer this ship. You decide who we tell and when,’ I told her.

Courtesy of Lizz L.

That day, I went home and made the appointments for my mother’s Alzheimer’s disease assessment, I already knew what the outcome would be and was terrified for the journey we were about to embark on. The doctor was amazing and ordered all of the right tests. She was very compassionate and had a great bedside manner. We were called back about a month later for the results, which were very conclusively Alzheimer’s disease. The room fell silent, and my dad began to weep, but my mom was mad. I just sat stoned-face. I would grieve later, in private. This wasn’t about me.

‘You can only diagnose that with an autopsy. You are guessing,’ My mom said very angrily. ‘That is true. Having said that, based on your CT scan, your psychological testing, the family interview, and your family history, that is the diagnosis we are very comfortable giving you,’ the neurologist said with great confidence.

We went home and ended up getting two more evaluations that concluded, sadly, my mom had Alzheimer’s disease. My mom refused to tell anyone but by this time, most people knew something was wrong with her, as it was very apparent she had become a different person. My mom and I started spending a lot of time together. While my kids were at school, we would shop and go to lunch. I’d help her with appointments, run errands, or even just hang out. For the first time in my adult life, I had the best friend/mom relationship I had always wanted.

Courtesy of Lizz L.

We always shared so many laughs and anyone who saw us always commented on how much fun we were having. I became the first person my mom called for anything. I was her eyes, her ears, and her memory-keeper. I relished this new role. After all, wasn’t this what I had always wanted from my mom my whole life? I knew every detail of her life. I knew where every possession she owned was located. Sometimes even before she asked me, I would know she was missing an item and I’d know just where to find it. After all, we could read each other’s minds. This new dynamic was amazing, but at what cost? My mom was sick and literally every time I saw her, a new piece of her was missing. That dirty thief, Alzheimer’s disease, was back in my life to claim another amazing woman’s dignity.

Courtesy of Lizz L.

My mom’s disease was progressing to the point where she had a lot of trouble performing tasks on her own. We didn’t leave her unsupervised, but she still very much knew her family and depended on us greatly. So the event that took place on May 14 of 2019 couldn’t have surprised me anymore. I picked her up that morning for a routine dental cleaning and as usual, she was really happy to see me. The dentist was about an hour away so we had a great visit on the drive. Nothing was unusual or out of the ordinary. I held her hand throughout the appointment, as she didn’t particularly enjoy dental appointments. Nothing about the cleaning stood out as odd. When she was done, she joked to the receptionist that her daughter liked to torture her and walked out the door with a smile on her face.

As soon as the sunlight hit her face, she turned, looked at me, and said, ‘You never told me.’ ‘Told you what?’ I asked. ‘Who you were,’ she said. ‘Are you joking?’ Her question took me so off guard. She looked at me with so much confusion and asked again who I was. I was her baby, I was the one who could read her mind, I was her best friend, I was her memory, I was her daughter! When your loved one gets an Alzheimer’s diagnosis, you read all of the information you can get your hands on. Research can help you wrap your brain around what is going to be happening, but absolutely nothing you ever read can prepare your heart for the day your mom doesn’t recognize you.

‘I don’t know who you are and I am very scared,’ she said and was crying now, shaking. All in a couple of seconds, I realized this was very real. She was terrified and had no clue who I was. I very calmly coaxed her into my car by gently grabbing her arm and helping her sit down. Right away. I gave her some water and tried to calm her down. She wanted to know who I was and where we were, and she wanted me to take her home. I soon realized ‘home’ was her childhood home and she wanted to be with her mom and dad. I tried to explain who I was but nothing was making sense to either one of us. My mind was racing. This was not how Alzheimer’s disease was supposed to progress. Everything I thought I knew about the disease was turned upside down. She was supposed to forget things gradually. What was happening?

Things went downhill at a lightning speed after this event. I would be lying if I said I didn’t always wonder if it was somehow my fault. What if she didn’t get her teeth cleaned that day? What if someone else took her? What if? Unfortunately, this is the way things played out and her memory of who I was never really came back, ever. Shortly after this incident, we had to have her hospitalized to have her medications stabilized. Now she resides in a memory care facility. I visit my mom three to five times a week. She recognizes me because I visit frequently, but has absolutely no memory of who I was to her.

Courtesy of Lizz L.

Recently, a miracle has occurred and that’s all I can say about it. We were sitting there, visiting, and she looked at me while I was talking and remembered a nickname she called me when I was a toddler: ‘Little Bits.’ I didn’t even remember it. (One of my sisters couldn’t say ‘Elizabeth,’ so they called me ‘Little Bits.’) Now she exclusively calls me ‘Little Bits’ and knows right when she sees me. It’s amazing, but I don’t ever take it for granted because I know I could show up any day and she could completely forget about ‘Little Bits.’ That is how this horrible disease works.

Courtesy of Lizz L.

If you have a loved one who is exhibiting personality changes, please help them get assessed. More importantly, have the very difficult conversation about end-of-life wishes and what kind of care your loved one wishes to receive. Knowing this disease is in my genes gives me every bit of the motivation I need to make the lifestyle choices to be the healthiest version of myself. I don’t think either my grandmother or my mom did anything to get Alzheimer’s disease. Having said that, I will do everything in my power not to get it.”

Courtesy of Lizz L.
Courtesy of Lizz L.

This story was submitted to Love What Matters by Lizz L. from DuPont, WA. You can follow their journey on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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‘As my daughter was giggling, bursting with love in the next room, I was learning she wouldn’t be growing up at all.’ Mom’s 18-month-old daughter diagnosed with ‘Childhood Alzheimer’s’

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