Saint Alyson Has Left the Building

Mom is safe, but I need a break

This is my favorite photo of my mom. Her friend Martha took it after I got them tickets to see the 4th of July fireworks from the south lawn of the White House. This was in 1999 or 2000.

Several weeks ago, I made a decision. My visits with my mom were starting to wear me down. After I left, I had to come home and take a nap. Moreover, I want to be over the abuse and neglect she subjected me to. People tell me her behavior now is the Alzheimer’s, but she hasn’t changed much in terms of the way she treats me, so I have a hard time believing that.

My decision was to pull back from the visits. She is well taken care of. The people at the Olsen Rest Home are super nice to her. And because they aren’t me, she is nice to them. My ability to be patient and kind was wearing thin. I didn’t like who I was when I was with her.

Fate had another plan. The day after I made this decision, the home called me. An infection on her leg had gotten worse, and they wanted to call an ambulance to take her to the hospital. I told them to send her to Stony Brook University Hospital because that’s where her doctors are.

The day after I decided to spend less time with her, I spent about 10 hours at the hospital. I didn’t expect this, but it brought back memories I had not thought about in decades. When I was ten, I went to visit her in Iceland. The trip got off to a rocky start when she forgot to pick me up at the airport.

If you are wondering, I went to the airline and got a shuttle into Reykjavik and her hotel. She was more annoyed than anything when I knocked on her door.

She was living in Vestmannaeyjar. That is the town on Heimaey, an island in the Westman Islands just south of the mainland. It was a magical place in a lot of ways. I remember climbing up the volcanoes and thinking, “This isn’t scary!” Mom was scared of heights, and I thought I was supposed to be as well.

As many kids do, I ran around without my coat on. Also, as many kids do, I got ear infections a lot. That August, I got one. Mom had to take me to the emergency room, and she was pissed off about it. This was my fault, she said. “This is why I told you to wear your coat! I am so angry about this!” My entire family feigned concern for my well-being until that meant they had to do something.

So going to the ER with her and sitting with her for hours while she complained that she didn’t need to be there and why was I torturing her? was a bit much for me. When they came to do an ultrasound, I thought it was a safe time to go to the bathroom. Wrong. I went to the bathroom and then waited for her. It took a decent amount of time, so I assumed they did the test.

Later, I would learn she refused the test because “I don’t know those people.” I get it. It’s her brain not working, but it was frustrating. When the doctor came by, she made up a sign and taped it to Mom’s stretcher that she needed this test to make sure there was no blood clot in her leg.

I waited until they did the test. Then I waited some more to see if I could get the results. At about 10:30 pm, I talked to the nurses, and they suggested I go home. I did. I was falling asleep, and they had everything covered.

I have written a lot about my experiences with my mother, but I am going to explain it a little here. She left when I was three. She had started a PhD program at Stony Brook University and went to Iceland to work on her dissertation. She wasn’t really in my life much until I was a teenager.

When I was 14, she met Jim Cassin and was in love. They married a few years later but she didn’t tell me about it. My grandmother told me six months after the fact.

My father, meanwhile, was a violent sociopath. I only mention him because he liked to hire private investigators to follow us. When I moved back to Long Island in 2019, I found reports and photos of trips Mom took with Jim. They went to the Grand Canyon, camped throughout the Pacific Northwest. She had an entire life I knew nothing about. That is now important I was to her.

Jim was a jerk. Not just to me but to everyone. He delighted in getting a rise out of people and hit on every woman Mom knew (inlcuding me). When Mom had a kidney tumor he and I argued about how serious he took the situation and I wasn’t allowed in the house for five years.

Three years ago, Mom called and said she couldn’t live alone because of her memory. Before I moved away from Florida, I made her take me to her doctor and she was formally diagnosed with dementia but she could still live on her own. By January 2023, she knew that was no longer the case (Jim died of pulmonary fibrosis in 2012. Mom claims he was cross-dressing before he died and told her he always felt like a woman. I think he had to be more human to have those feelings).

Mom said, “Before you say no, I would like you to consider letting me live in the basement apartment.” I had been anticipating this request so I didn’t say no. She moved in that July. I found her doctors on Long Island, changed the house to make it safer for her (put in a stairlift, altered her bathroom, and redid the driveway), put her in a day program, and took care of her. She was mean as a snake the whole time.

Today, she will say she wants to live with me in this house, the one her parents built, but when she was here, she complained every day. I was holding her hostage. She could hear me talking to my friends about her at night (when I wasn’t home), etc. She would call up the stairs when I was in my bedroom/office and holler, “If you don’t shape up, I am calling the cops!” That was fun to explain when I was on a work Zoom.

When her hygiene issues became more than I could handle and when she started to wander, I found a home for her. A lot of people have trouble getting their loved one to go to one, but Mom was mad at me that day, so she didn’t have an issue.

Caring for someone with dementia is really hard. You can’t know how hard until you do it. Caring for someone with dementia who never cared for you is excruciating. People have told me how patient I am and how great I have done with Mom. I am not sure about any of that.

I am no saint. I don’t want to be and have no illusions about that. I am a deeply flawed person. I can deal with that. What still gets to me sometimes is the judgment from other people who don’t know us or our situation. Mom has stopped bad mouthing me to anyone who will listen, but that is only because she understands, on some level, that it makes her look bad. Six months before she moved to the home, she convinced a man at the Ronkonkoma train station that I was holding her in a cellar and never let her eat.

After Mom’s infection got better, they moved her to a rehab place. We have a meeting scheduled for Tuesday to decide when she can go back to the home. We are looking at this Thursday. I am not going back there until Tuesday morning. I may not see her that morning because I have a medical appointment of my own, and I am just catching up on the healthcare I need, but let slide when she lived here.

For the first time in my life, I am putting my needs first and it feels strange, but I will get used to it.

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