by Renee Uitto

I always had a good relationship with my mother. She believed that I should have the best of everything and she made sure that I had the best education, therapy and everything else I needed.  When I wanted to live on my own after my relationship ended, she supported me then also. When she started having problems with her memory, it threw me for a loop and shocked me.

She was asking the same things over and over again and looking through her purse constantly.  My brother lived with her and he called her stupid. I hated this. He did not understand what was going on. I was really worried about my mother and my brother was taking advantage of her.  Approaching 50, he didn’t have a job. I have cerebral palsy and did my very best to take care of myself financially. My brother and I didn’t agree on certain things.

One day he called me and told me he was going to kill himself. I didn’t know what to do, so I called my friend.  She told me to call 911. My mom called me because she didn’t know what was going on. I told her my brother was taken to the hospital. My sister came and got my mother the next day. My brother had to stay in the hospital for a few days and then go to a mental health facility. My brother and mom are now living in Kalamazoo with my sister and her family.

I thought about moving to Kalamazoo, but I had a hard time finding an apartment. Plus, I would have to wait until my insurance would kick in. It is difficult not seeing my mom. Kalamazoo is about three hours away. I only see her every few months, which is very frustrating for me. She is still confused as to where she lives. My mom still thinks she is going home one day, but she’s not.  It is sad, and it is hard to explain what is happening. She needs to go in a nursing home, but I know that is going to be scary for her.

In a lot of ways, I have already lost my mother. My mom used to come over to my apartment, bring me food, take me shopping and to appointments. She couldn’t do this for a long time. I had hip replacement surgery last year, and she couldn’t remember that I was in a rehab all summer. I had to remind her all the time that I wasn’t home. While I was in rehab, she took a driving test and it was determined that she couldn’t drive anymore. I saw her even less after I got home. It made me sad and depressed. I was dealing with caregivers that weren’t very good to me. I didn’t see my mom until Christmas. And then, everything with my brother happened.

I have cerebral palsy and depend on caregivers to take care of me. Some of them do a great job, but some don’t. This is when I really miss my mom the most. She wouldn’t like to hear that I was mistreated in any way. I tell her some things that happen, but I know she doesn’t remember.

I make sure I call my mom at least once a week. I should call her more. I feel fortunate that my mom still remembers who I am. One day she may not. Hearing her say that she loves me still means the world to me. She is the most important person in the world to me! It is unbearable to think what life would really be without her. At least I can still talk to her on the phone. Even though she only talks to me for a couple minutes, I have those couple minutes. This year she called me on my birthday. I didn’t think she was going to remember.

Dementia is such a scary disease. I’m feeling a lot of grief now. My mom cannot visit me the way she used to. She used to come over once or twice per week and bring me food. She was the best cook ever. I loved her turkey and stuffing, Swiss steak and mashed potatoes and her potato salad.  It was hard when she lost her driver’s license last year because we couldn’t see each other as much. A year later, she still thinks she can drive.

I know there is a change in me. I feel something is missing in my life, and I know it won’t be the same again. Sometimes it stops me cold, and I feel overwhelming fear. I let a lot of things go and am not the social butterfly that I used to be. Sometimes I lose track of things, which is not like me. My mother was my whole world. Now that she is slowly slipping away, nothing else matters.

Renee Uitto has been a writer since college. She wrote for both of her college newspapers. She received a B.A. in Journalism.

Currently, she is writing essays about matters that affect her life. She is also publishing articles for two newsletters, Stepping Stones and Let’s Talk from the agency Oakland Community Health Network in Troy, Michigan. She belongs to several committees at OCHN that pertain to such issues as guardianship, self-determination, state and federal issues that pertain to persons with developmental disabilities and persons with mental illness.

Renee lives in Troy, Michigan and enjoys reading, shopping, and music.