Hi.

This isn't a how-to. I'm not a pinterest mom. I'm a firm believer in faking it 'til you make it. This is for all the millennials out there who secretly have no idea what they're doing. I'm looking at you, millennial caregivers. 

An Awful Day

Yesterday was one of the worst yet. I want to start out by saying that these last few months have been very... manageable. HD is still there, but we found a way to manage my mom by taking over her bills and responsibilities. Overall, her mood has been a lot more stable. Yes, she still has manic moments, but a lot of the anger subsided. Her building has been a really positive place for her to be. The staff there is very understanding and helpful. They'll call me if she's acting "odd" or check in on her if I haven't heard from her in a few days (I try to talk to her on the phone once a day). Most of my mom's days are spent by the pool or getting a bite to eat down the street. Overall, she is happy but I know the situation all too well and I've come to expect the unexpected. 

In other, happier news, I am pregnant with twins! A baby girl and a baby boy will be coming into the world in just a couple of months. Every kick I feel makes me so grateful and emotional to know that not only are we blessed with these precious little babies, but also that they are HD free and will never have to go through what my mom is going through.  The pregnancy has been smooth so far and besides being uncomfortable, I have no complaints. S is so excited for the babies to arrive. I couldn't be happier in our marriage. He is absolutely my rock and I don't know how I would get through any of this without him. 

Anyway, back to yesterday. Yesterday, after not hearing from my mom for a few days, I woke up to manic emails from her. From what I gathered, she was detained in the local jail overnight. There weren't any details besides that. As her cell phone was off, I knew I had to go down there to suss out the situation.

When we got to my mother's apartment, I wasn't prepared for what we would find. She answered the door crying and screaming. Her hair was matted. Her clothes were dirty and tattered. Her eyes looked dead and mean. It was someone else in her body. She was hysterical and demanded that we leave, told us that she didn't trust us, hated us and that somehow we were behind her arrest. Her phone had been off because she knew that someone was "tracking" her. 

Honestly, for a few minutes, I was so afraid that she would attack me or throw something at me. I think I was more afraid for my babies than I was for me. It only took a few minutes of her verbal attack for me to feel completely and utterly overwhelmed and helpless. I ran from her apartment and sat in the lobby outside and completely lost myself. I couldn't breathe. I couldn't stop crying. All I could do was wrap my arms around my belly and try to protect the two most important people in my life. S helped me breathe in and out slowly. He told me over and over again that the person in that room wasn't my mother; this was Huntington's Disease taking over. I know that. It's just so hard to watch it. 

After I calmed down, we went back in the apartment to try to calm my mom down. It took a few hours but gradually she went from hating us to loving us and feeling sorry. I spent half the time there looking at the floor and letting her talk at me. Nothing she said was rational, but we needed to ride it out. It was nothing less than awful. 

After calling the police department, we got the full story. She was arrested at the shopping center for disorderly conduct. An anonymous caller reported her saying she seemed intoxicated and was acting suspicious. When the police questioned her, she fought back and got worked up which didn't help her case. She spent the night in the local holding cell and then was released for a psych evaluation. They diagnosed her with "acute psychosis" and then sent her on her way. I do feel badly for her. I can't imagine being in that position. Not only could she not comprehend why this was happening to her, but she also she still can't see that she has Huntington's Disease... or she's in denial. She couldn't explain the misunderstanding to the police, she became manic and hysterical in the jail cell and they had no explanation for her behavior. Luckily, she wasn't charged with anything at the end. And luckily, I was able to call the police and put notes in her records for them to call me if anything like this was to happen again. 

The fact that she refuses to go back to a doctor infuriates me. I can't force her to go and I can't convince her that she has HD symptoms. If I could, I'd imagine that medication would calm most of these manic symptoms. At least for the time being. My brother is in town this week and we are going to talk to HD doctors and social workers about next steps. I still don't believe that she needs to be in an assisted living place just yet. Of course there will be time for that. For months on end, she can take care of her daily needs and be independent. But then episodes like this pop up. There must be some sort of happy medium that we can find. 

I've said it before but one of the hardest things about Huntington's Disease is that it's ever changing. When you finally feel in control, something like this happens. I have no control and there is no specific plan that works for everyone. It's trial and error. Right now, we're just flailing. 

One Year Later...

A New Year