“One of the hardest things you will ever have to do is to grieve the loss of a person who is still alive.” – Unknown
I’ve been thinking about my mom a lot since I moved to Florida. I thought about her quite a bit when I lived back home, too, but it was in a different way. I used to sit and worry about her all the time. If I wasn’t with her, I would wonder what she was doing and how her day had been. I would look at the clock and think, “Ok, it’s 6:30pm. I wonder what Mom is doing right now? I wonder if she ate her dinner. I wonder if she’s upset today.” I thought about her constantly. When I moved to Florida, I continued thinking about her all the time, but I noticed it was different. I wasn’t really worrying about her as much, but I was still thinking about her constantly.
I realized that I was thinking a lot more about my “old mom.” For a while, it seemed that no matter where I went or what I did, something would remind me of my “old mom” and I would start missing her like crazy. I would become so sad and have this painful yearning for her. I reminded myself that there was no reason to be missing my “old mom” any more now than I did back at home. My mom was still the same as she was when I moved. Nothing had changed, really. Well, except for the fact that I had moved far away and I couldn’t see or talk to my mom whenever I wanted. What was it about being away that made me miss the “old” her so much?
Anyone who has a loved one with Alzheimer’s knows that after a while, your loved one becomes so dramatically different from the person they once were. As you begin to accept and adapt to the changes you see in your loved one, you also begin to miss the person they used to be more and more. I began missing my “old mom” years ago, but it was often overpowered by my worry and concern for her care and well-being. I was always too busy thinking about what was going on with her that I didn’t have time to think about or miss the “old” her.
After I moved away, my caregiving duties and obligations diminished. I knew that my mom was being cared for at home and I didn’t really need to worry about it that much anymore. My thoughts began shifting back to my “old mom” and how much I missed her. It certainly didn’t make it any easier that I couldn’t just call my mom any time I felt like I wanted to talk to her. My mom hasn’t been able to talk on the phone for a while now and her conversational skills are extremely limited. I would have to get by with the occasional Facetime session with my mom whenever my dad was home and available. Any time is not always a good time to attempt a Facetime call, either. Honestly, the good times are few and far between.
So, here I am, living in Florida, missing the hell out of my mom, and not able to communicate with her very often. I began to realize why missing my mom suddenly felt so different. Being far away from her with very limited contact made me feel as if she was already gone. I was remembering her and missing her as if she had died. I felt like I was trying to move on with my life after her death. Every little thing reminded me of her and made me feel sad. I felt like I was in mourning. Mourning a death that has yet to come.
Come to think of it, I’ve felt this way for the eight years since my mom was diagnosed. I could be sitting right next to my mom, holding her hand, but I still miss her. I could be talking to her or hugging her, but it still doesn’t feel quite right. I’m missing whole parts of her that are now long gone. I’m missing parts of myself, too. To be honest, I haven’t really felt like myself in years. I feel like someone who is just going through the motions of life, doing what I’m supposed to do, but without any real purpose. I feel like I’ve just been trying to get by; like I’m just trying to move on with my life. I’ve been mourning the loss of my mom for so long, but she hasn’t gone anywhere. That’s the thing about mourning the living: you’re grieving for a long period of time with no closure. If you don’t have closure, how can you try to move on? You can’t. You don’t. You just hang on to whatever thread you have left. You put one foot in front of the other; day in and day out. You do this for years – sometimes ten or more – until you find yourself actually hoping that she will just die already because you don’t know how much more you can take.
Although my mom is alive, I still miss her like crazy. I miss what was, and I miss what might have been. I look at other women my age who are out shopping or having lunch with their moms and I think, “I wonder what that’s like?” I wonder if we would have texted each other. I wonder if she would have helped me pack for Florida. I wonder if she would have come to visit me. I think about all of the things I never did with my mom and all of the memories that we’ll never have. I do all of these things and yet, I know that she’s still alive. The worst is yet to come.
Mourning the living feels just like mourning the dead. No one has died, but there has been a death. Mourning the living takes such a toll on a person that you feel like an empty shell. Then, there are two empty shells in the room: you and your loved one. It’s hard. Really, really hard. Like I said, I haven’t felt like myself in years. It’s easy to lose yourself in caring for someone else. It’s even easier to lose yourself in mourning that same person. Put the two together and you’re just a hot mess.
As for me? Yes, I’m still a bit of a hot mess. But I’ll keep plugging along.
Previously published on Life, Love & Alzheimer’s.
Lauren Dykovitz is a blogger and author. She lives in Florida with her husband and two black labs. Her mom, Jerie, was diagnosed with Alzheimer’s disease in 2010. She is still living with Alzheimer’s and is now 70 years old.
Lauren writes about her experience on her blog, “Life, Love, and Alzheimer’s.” She has also been a contributing writer for several other Alzheimer’s blogs and websites. Lauren recently self-published her first book, “Learning to Weather the Storm: A Story of Life, Love, and Alzheimer’s.” It is available for purchase on Amazon.
Please visit Life, Love & Alzheimer’s to learn more about Lauren’s journey.