Breathless. Sweaty. My feet hitting the pavement as the miles tick by. One mile, two miles, three, and then four. I keep going. My hips hurt. My legs hurt. My everything hurts. I resist the urge to look down at my watch. “How many miles do I have left? How fast am I going? I can’t keep this pace for much longer.” The thoughts of doubt begin to creep in. “This is really hard,” I think to myself. But then, another voice says, “Do it anyway.”
My mom was diagnosed with Alzheimer’s eight years ago. Eight years. That’s almost a decade. That’s a long-ass time. Never did I ever think that we would still be here. Never did I ever think that my mom would be fighting a terminal illness for this long. It has been the greatest challenge of our whole lives. It is a constant, daily struggle for all of us. As my mom’s Alzheimer’s progresses and she continues to decline, we struggle to keep up. I’ve often heard people say that Alzheimer’s is a marathon, not a sprint. It’s so true. When your loved one is diagnosed with the disease, you know you are in it for the long haul. You have no idea how quickly the disease will progress. You have no idea how much time you have until it’s over.
Although Alzheimer’s is not an actual marathon, at least not one with a finisher’s medal, the similarities between running and caring for someone with Alzheimer’s are undeniable. When I’m running a half marathon, there are a lot of things I tell myself to get through it. “Pace yourself. Don’t start out too fast or too slow. Don’t worry about what everyone else is doing. Run your own race. Run the mile you are in. The miles behind you are just that…behind you. You can’t re-run them and you don’t have to. Don’t worry about the miles ahead of you. They will be there waiting for you to run them when you get there. Just focus on the mile you are in and run your heart out.”
These are the same things I tell myself when I become overwhelmed with my mom’s Alzheimer’s. “Pace yourself. One thing at a time. Live the moment you are in. What’s in the past, stays in the past. You can’t relive it and you don’t have to. You can’t worry about the years that lie ahead. They will be waiting for you when it’s time for you to live them. You never know what they will bring and worrying about it now won’t help you. You can only live the moment you are in and live your heart out.” Sound familiar?
It’s hard to find someone to run a marathon with you. Some people will run a mile or two, but then they stop. They are excited and eager to run with you in the beginning, but then they lose interest. People fall back, creating distance between you. Some people pick up the pace, moving on and leaving you to run alone. The people running next to you at the beginning of the race are usually nowhere to be found at the end. Everyone is running their own race. You may find yourself running with a complete stranger, but you support each other nonetheless.
It’s hard to find someone to join you on your Alzheimer’s journey. They are intrigued and eager to help when they first hear of your loved one’s diagnosis, but then they lose interest. They fade away into the background or they simply move on with their lives. It becomes old news and they have other things to worry about. People come and go throughout your journey, but few will stick around for the long haul. Everyone is busy living their own lives. You may find more support in the strangers you meet along the way than in the people who were by your side at the beginning of your journey. After all, Alzheimer’s is a marathon, not a sprint, and like I said, it’s hard to find someone to run a marathon with you.
The obvious difference, of course, is that no one actually wants to run the Alzheimer’s marathon. People with Alzheimer’s and their caregivers are unwillingly thrust into this race. None of us signed up for this. We haven’t trained. We’ve done nothing to prepare. We’re forced to stumble along and learn as we go. A few miles in, we find ourselves searching for the finish line. We wish we were only doing the sprint. Sure, it would still be hard and painful, but it would be over by now. We would be left alone to recover. But, this isn’t a sprint. This is a marathon. We’re in it for the long haul. We take it one day at a time, sometimes one minute at a time. The finish line is nowhere in sight. Sometimes we think we see it, but then it disappears and we’re back to just plugging along. We run for five years, ten years, sometimes more. We have no idea when it will end and although we see the finish as a relief, we dread it all the same.
We are breathless and sweaty, putting one foot in front of the other, as we try not to think about the passage of time. “How long has it been? How much longer to go? I can’t do this much longer.” Our minds are exhausted. Our hearts are broken. Our souls are heavy. We doubt ourselves and our strength. But in times of challenge, whether in running or in life, we must remember this: Lean in. Push and pull. Give it all you’ve got. In times of transition, remember to breathe. Inhale. Exhale. Stay calm. You’ve got this. They may see you struggle, but don’t let them see you quit.
It’s going to be really hard. Do it anyway.