People often ask me how my mom is doing. I have a love-hate relationship with this question. I love that people are thinking about my mom and that they care enough to ask how she is doing, but there is no easy answer to that question. I cringe every time someone asks me it. I would love to go into great detail and tell them exactly how she’s doing, but I know they probably don’t really want to hear it. I understand that people mean well when they ask me how she’s doing, but I don’t think they understand that it’s a difficult question to answer. It makes me think about every single thing that’s going on in our lives at the moment. It brings up painful, sad, and depressing memories for me. It makes me wish I had better news to give them. It makes me uncomfortable to have to figure out how to answer them. I feel like I have to sugarcoat it for them. I can never be completely honest because it would make them sad and uncomfortable. I usually just respond with, “She’s ok” or “She’s hanging in there.” The truth is that she’s not ok. She is suffering and struggling a great deal. And so are the rest of us. If you’re here reading this blog, then I can only assume that you really want to hear how she’s doing, no matter how sad or depressing it may be, so here goes.
Yesterday I went to visit my mom and have lunch with her. My sister, Melissa, and her baby, Charlotte, were also going over to visit. I picked up salads for everyone and was really hoping to have a nice visit with all the girls. I should’ve known it wasn’t going to be a good day when I tried to fix my hair at a red light and my hair tie went flying out of my hand, seemingly vanishing into thin air. I seriously looked everywhere for that fucker, but it was nowhere to be found and, of course, I didn’t have an extra one on hand. It wouldn’t have been so bad except that I had just finished running 35 minutes of speed intervals on my treadmill and didn’t have time to shower before I left the house. My hair was a sweaty, knotty, mess. I ended up having to go into Saladworks looking like Amanda Bynes after she had that meltdown. Zero fucks to give.
Anyway, I knew the moment I walked into my parents’ house that it wasn’t going to be a good visit. My mom was sitting in the chair in the family room, holding a leprechaun decoration, and she just looked totally out of it. I sat down on the ottoman in front of her and said, “Hi, Mom. It’s your daughter, Lauren. How are you?” She just looked at me like she had no idea who I was or what I was talking about. I think she said hi, but then she quickly launched into a nonsensical, irrational rant about someone having an accent. She said, “I asked him if he had an accent and he said no. He told me he didn’t have one. He said that he was American, just like me. He lied to me.” Don’t even ask me what she was talking about because it doesn’t matter anyway. There is no reason or justification in Alzheimer’s world and you eventually learn to just play along. I said, “Oh really? What kind of accent did he have?” To which she replied, “I don’t know! I didn’t hear it! I didn’t even know he had one!”
It was clear to me that she was in an agitated state and that she was mad at or upset with someone about something. I was able to redirect her attention toward the fact that her daughters and granddaughter were there to have lunch with her, but even that made her mad. She said, “Yeah and no one invited me.” I said, “Well, I’m inviting you now. Let’s have lunch.” She said, “No one even told me about it. I just found out right now. He lied to me. He said that he didn’t have an accent, but he does!” And it basically went on and on like that for the rest of the visit.
I was eventually able to get her to sit at the kitchen table and we all sat down for lunch. It was as if my mom had suddenly completely forgotten how to use her fork. I had just brought salads over for lunch one day last week and my mom used her fork with no problem at all. She was now trying to eat her salad with her fingers and when I handed her the fork, she had no idea what to do with it. She kept setting it back down on the table and wasn’t eating at all. I ended up putting food on the fork and handing it to her with each bite. She still kept putting her fork down and didn’t seem to “get it.” In total, she had maybe five good bites of salad before she said that she was full. I said, “Wow, you’re full already? You didn’t eat much.” She said, “I’m still full from yesterday! I ate a lot yesterday and I’m not eating anymore!” After a few attempts to get her to eat a little bit more, I saw that she was getting really upset and agitated, so I let it go. She ate almost her entire salad last week, but this time, she barely put a dent in it.
Some people might think it’s not a big deal and that maybe she just wasn’t hungry. Well, I can promise those people that my mom has no idea what it feels like to be full or hungry. You just simply have to tell her when it’s time to eat and then she does. But what do you do when she is refusing to eat? I look at pictures of my mom from this time last year and she is half the person now that she was then. She is shrinking. Her shoulders are small and frail. Her arms are thin and stiff. Her legs are thin and weak. She is disappearing right before my very eyes. Aside from her size, she looks tired and weak. She suddenly looks so much older to me. She can barely stand up and has a lot of difficulty walking, but she refuses to use a wheelchair. She has started falling. Just last week I got a call from my dad, asking me to come over because my mom had fallen and he couldn’t get her up. I dropped what I was doing, drove over to their house, and had to physically pick my mom up off the floor and stand her up. Not because she physically couldn’t get up, but because she didn’t know how to. Can you even imagine what that’s like? And then, she got mad at me for doing it.
After we finished lunch, Melissa had to get Charlotte home for a nap. I decided to stay for a while to talk with my mom. She continued reverting back to the man who lied about having an accent and it seemed like everything I said made her mad. I felt like I was holding a ticking time bomb and doing my best not to make it explode. I noticed that she kept grabbing the crotch of her pants, so I asked her if she had to use the bathroom. I can tell you that my mom has no idea how it feels to need to use the bathroom, so you just have to read her body language and try to get her to go. She said that she did so we got up and walked to the bathroom. Once inside, I started telling her what to do because she has no idea what to do herself, but she won’t let me help her. She started pulling her pants down and then back up, down and up, down and up, down and up. She said, “There’s nothing there. It’s all clean. This is all clean. Let’s just go. I want to go home.” I tried to talk nicely to her and explain what to do, but she wasn’t having it. It doesn’t matter how nice you are. If she doesn’t want to do it, she won’t and there’s no reasoning with her. Trying to reason with my mom is like trying to get a blind person to see or a deaf person to hear. She started pulling further away from me and closer into the corner of the bathroom. I decided not to push it any longer and we went back into the family to sit down, without her using the bathroom. Fuck. My. Life.
Sitting there looking at my mom and listening to her go on and on about the man with the accent, I felt really fucking sad. Her hair is dirty, greasy, and probably hasn’t been washed in weeks. She sometimes refuses to shower or change her clothes for days, let alone wash her hair. Her skin looks terrible and dry. Her one ear looks dry and flaky, either from dry skin or dandruff. She stinks. Her breath stinks. I know that she only brushes her teeth once a day at the most and sometimes probably not at all. She can barely form a complete sentence, let alone have a conversation with you. She looks at me like she’s suspicious of who I am and why I’m there. She’ll look up at me suddenly and say, “Who are you?” or “What’s your name?” She recently started saying that she wants to go home. She says it all the time, no matter where she is. In Alzheimer’s world, home is no longer a place. It’s a state of mind. It basically means that she wants to feel safe and comfortable. She wants to get out of her brain and go somewhere that feels normal. Sometimes she will get angry and yell, “Take me home now!” Yesterday she started asking to go home repeatedly. I felt like my presence was bothering her and making her upset, so I decided to end my visit.
As you can see, there is no easy answer to the question, “How’s your mom?” If I launched into a long, descriptive narrative like this every time someone asked me, I bet no one would ever ask again. So, how’s my mom? What is it like to have a mom with Alzheimer’s? Well, she’s not doing well and it fucking sucks. I’m losing more and more of her every day. I’m constantly torn between wanting to live my life and wanting to be there to help my mom. But, there is nothing I can do to help and nothing that I do will ever be enough because I can’t fix it. I can’t make it go away. To make things worse, I feel like I’ve lost my dad to this disease, too. Alzheimer’s is a family disease. It affects everyone equally. My dad has been swallowed up by this disease. Taking care of my mom has destroyed him. I don’t think he will ever recover from this, even after my mom is gone. I pretty much have no relationship with him anymore, outside of doing my best to help him and my mom. It’s not exactly stop-and-chat conversation, is it? Maybe instead of asking, “How’s your mom?”, you could just say, “I think about you and your mom all the time” or “Your family is always in my thoughts.” I know that people truly care about my mom and I appreciate the sentiment of asking me how she’s doing. If you are one of those people who asks me, please don’t be offended by any of this. I’m not trying to be a dick. I’m just trying to keep it real.