Over the last eight years since my mom was diagnosed with Alzheimer’s disease, I have developed a love-hate relationship with the following question, “How’s your mom?” When my mom was first diagnosed, I didn’t really tell anyone and I never wanted to talk about it. But since only a limited number of people knew anyway, no one ever asked me how she was doing. As the years went by, I began telling more and more people about my mom’s diagnosis. I began posting about it on Facebook and I started this blog to share my story. People started asking me about my mom all the time and although I really appreciated their concern, I never knew how to answer them. I always felt like people didn’t really want to hear the truth because the truth was sad and depressing. I never knew how much detail to go into. Like, how much do you really want to know? I just assumed that most people asked as a way of showing that they cared, but they probably didn’t really want to know all that was going on.
I quickly began to rely on several standard replies to the dreaded question. I would say, “Oh, she’s as good as can be expected,” or “She’s hanging in there.” Sometimes I even added something like, “She has good days and bad days,” just to mix it up a bit. These answers seemed to satisfy mostly everyone. They had shown their support and concern without having to hear all of the depressing details. And, I didn’t make anyone uncomfortable by over-sharing or unleashing all of my emotional torment on them. It was a win-win.
I always knew when people actually wanted to know more about my mom’s condition. Typically, I would go into more detail with family members and close friends. I always felt that people who had a loved one with Alzheimer’s themselves wanted to know more. They asked me about my mom because they wanted to be able to compare and relate to what I was going through. Other times I knew people wanted to know more because they simply asked more. I would give my standard response and they would have follow-up questions. One time a family friend asked me how my mom was doing and I replied, “Oh, she’s hanging in there.” She came back with, “That’s it? Just hanging in there?” Initially, I was a little bit caught off guard and even offended by her response, but I realized that she just wanted to know more details. She wanted to know what “hanging in there” actually meant. And so, I told her.
I continued to share my story on social media and my blog, but I still dreaded when people would ask me how my mom was doing. Although I was more open to talk about it than ever, I was always worried that I would make someone uncomfortable by talking about it. It was one thing for someone to “like” or comment on a Facebook post or read my blog, but it was quite another to sit face to face with me and listen to the bad news. I was never going to answer with, “She’s getting so much better!” or “They think they got rid of all of the Alzheimer’s this time!” Alzheimer’s is a progressive, degenerative, terminal disease. I would never have good news. It was never going to get any better. It would only continue to get worse.
As the years went by, I realized that answering the dreaded question was actually the easy part. The real heartbreak comes when people stop asking. My mom has gotten so much worse that people don’t even bother to ask how she’s doing anymore. Sometimes people don’t even mention her at all. She’s been sick for so long and I’ve been talking about it for so long that people just don’t care anymore. Well, at least that’s how it feels. I would never expect anyone to text or call me every day or week or even month to ask me how she’s doing, but there are people who haven’t asked since I don’t know when.
If I haven’t seen or talked to someone in a few months, then I would expect them to ask me about my mom the next time we talk or see each other. The problem is that a lot of them don’t. I don’t know why, but they just don’t ask. Obviously, my mom having Alzheimer’s is a huge part of my life and I care about it way more than anyone else does. I don’t expect anyone to care as much as I do, but I do expect them to care a little bit. Not asking about her or not mentioning her at all makes me feel like they don’t care at all. Yes, it’s sad and depressing to hear how much worse she has gotten. Yes, it might be hard for some people to hear. But if it’s that hard for them, then how the hell do they think I feel? Not asking me about my mom makes me feel incredibly alone and unsupported. Not bringing it up at all is like not acknowledging the elephant in the room. To be honest, I feel much more supported by complete strangers on Facebook than I do by people who I actually know in real life. The saddest part is that I’m sure a lot of other caregivers would agree with me.
Having said all of that, I know that a lot of people really do care about my mom and me. I know that everyone has so much going on in their own lives that they don’t always think to ask me about my mom. Everyone is busy with their own problems. I also know that not all caregivers want to be asked how their loved one is doing. It’s a hard question for them to answer and not everyone wants to talk about it. I used to be like that. Maybe that’s even the reason why a lot of people don’t ask anymore. Maybe it’s because I share so much of my story on social media and my blog that people feel like they already know what’s going on with my mom. Or, maybe people just don’t like to bring it up if they feel like I’m actually not thinking about it for once. No matter what, the point is that everyone is different, so it can be hard for people to know whether or not they should ask.
So, should you ask or don’t ask? I would say ask if you really want to know. Ask if you want to hear the details and really understand what’s going on. Ask if you’re able to put your own emotions aside in order to better support the caregiver in your life. Ask with understanding and empathy, but without judgement or criticism. If you don’t want to hear the details or if you’re worried that you might break down crying, then don’t ask. There are still ways to acknowledge the person and their illness without asking about it. Just say, “I think about you and your mom all the time,” or “Your family is always in my thoughts.” It’s really that simple. Just by acknowledging it, you are showing that you care. Those few words go a long way in supporting someone on this hellish journey. Trust me.
