Daughter, College Student, & Caregiver
Age: Mid 20s
Care Role: Cares with her Dad, Sisters, and Aunt. Lived with Mom as teenager.
Diagnosis: Early Onset Alzheimer's
Progression: Lived at home until 5 years ago, now in nursing home. Diagnosed 13 years ago.
I was 13 when my mom was diagnosed with Early Onset Alzheimers. She was in her early 50s. That was almost 13 years ago. I am the youngest of three sisters.
In the beginning, my family kept me sheltered. They were in denial. They didn't want it to be Alzheimer’s. They wanted it to be something fixable.
From what I remember of my mom, she always worked. We were her first priority. She was a PTA mom. Everything was mapped out and scheduled. My dad and my aunt noticed she was missing appointments. She had never forgotten a single thing. And her speech. She forgot her speech.
Getting a Diagnosis
Her first diagnosis was aphasia. My mom never stopped talking. She could talk for hours. But then she couldn't find her words. They thought it was menopause. She went to a neurologist. They started trying to help her aphasia. She went twice a week to this office and did homework. Word problems. But she wasn't getting any better. She was getting worse.
She got the official diagnosis when I was about 13. My mom was a dental hygienist. There was no history of Alzheimer's. They thought maybe because there weren't proper X-ray protocols. I slowly started to pick up on things. She wasn't going to work as often. She wasn't taking me a lot of places. My aunt would take me to my doctor's appointments.
I hate to say it. I was embarrassed of her. It wasn't happening to my friends’ moms. I would never offer our house to hang out. My mom was just waiting there. She had become a kleptomaniac. If there was a new hat or jacket in the house she would take it.
My mom in the end stages now so it's hard to remember what a terror she used to be. But in high school, my mom had to be admitted to the psychiatric ward. She was threatening to hurt us. She was under five feet but she ripped buttons off my dad's shirt. She’d rip the door off. I’d go to school and I couldn't talk about it with anyone. If my mom had cancer I could have said she was in the hospital.
I don’t talk about it much. I have one friend, a lifelong friend, who I confide in. But I don’t talk about it much. Your friends don't understand. I've been with my boyfriend for almost five years now. It's a lot to unload. He tries but he ends up listening and I’d rather have listening than sympathy and pity.
No matter how I try to explain it, my friends can never understand what I'm saying. I’d never wish this on anybody so it makes it harder. The social part can be difficult. If my friend says something about her mom, I’ll remember something about my mom. It helps me when people ask about her how she used to be. I think some people are scared of doing that sometimes. I want to remember. It helps to bring it up.
I like to keep her alive for people who didn't get the chance to meet her.
I understand why people don't want to talk about it. I don't know that I would want to talk about it. Unfortunately a lot of our family and my mom’s closest friends lost contact with us because a lot of people can’t handle it unless they are forced to deal with it. People always say to me “I can’t believe you did this. You are so strong.” I didn't have a choice. You get the cards you are dealt.
When my mom stopped working, my dad would bring my mom to his job. He owns his own business so he could bring her alone. But there were a lot of times where I would come home from school and it would just be us until my aunt came over and made sure we had dinner. My sisters and I would take turns taking care of her on Friday nights.
I went to therapy when I was 15. I went against my will. But I was lashing out. I was very angry. It was a lifesaver and I went until I went to college. I’m glad my dad forced me.
My dad went to a support group. This was years ago. A few towns over. I was in high school. Not to be crass but these people were grieving their mom and they were in their 50s or 60s. It's not the same. I met one one girl there. I still talk to her sometimes. She was a few years older than me. Her dad passed before. It was just her and her aunt.
It's a constant state of grief. It's hard for the brain to process. You can still see the person. The brain is tricking you. My mom had been in a nursing facility for five years. Now with COVID we haven't seen here. We’ve been able to Facetime. But she hasn't spoken in five years. Now it's me talking with her over Facetime telling her what’s going on in my life.
She's 114 pounds of titanium. She was one of two residents on her floor who didn't get COVID. She needs one-to-one care to get dressed, eat, do anything. So we were sure she’d get it. I hate to say but it's been 13 years. I thought she might finally be free. We might finally be free. We can grieve. My mom has been gone for so long. This woman looks like my mom but isn't her. I have grieved her.
Once she's actually gone, I don't know how it will affect me. My dad signed a DNR years ago. A year ago they found a bump on her nose. They called my dad panicked saying she needs a biopsy. He said leave it alone. With COVID, we said no ventilator. She needs to be comfortable.
She’s in this middle place. She’s half gone. We don't know “what do you know? What do you see? What can you hear? We have no idea.
My mom said whatever she wanted. It carried over into Alzheimers. She was very sarcastic. So when she said “who the hell are you?” I’d just go along with it. You have to just go along with it. It's never gonna click for them.
My mom asked me if my dad was single. She nudged me and said “who is that? I’d like to meet him.” And I said “oh, you wanna know more about him?” So I walked across the living room and sat down and chatted with my dad and introduced them. Those are some of my better memories. Always going along with her what she was saying.
Sometimes I’d come home and she’d curse me out. I’d remove myself. It took time to learn that. But five minutes later she’d be fine and have forgotten.
I learned patience. I used to snap at her a lot. I feel very guilty. I went to therapy. I would say to my mom “what’s wrong with you? You are supposed to be my mom? Why aren't you being my mom?” One time she was driving me and she forgot where she was going. I was giving her directions and I yelled “I can’t believe I’m doing this right now.” I wish i could have had more patience.
I think about it now from her point of view . I can't imagine how scared she must have been. She was young and sick. She must have been so scared about our future and missing our lives.
One thing I mastered is redirection. I quickly learned food was a motivator for her. She was a healthy eater her whole life. But then she was excited about sweets. I’d say “I know you are upset right now, but if you hope in the car we can go get pound cake.” She’d follow me! Over time you learn what works for them and what doesn't.
The other thing I mastered is to just have fun with it. Let yourself enjoy the moment. Appreciate that this person might not be your mom but appreciate them and that you can give them comfort.