One minute you're a wife, the next minute you're a caregiver. There's no time to process. No time to learn. No step by step instruction manual. It's a trial by fire, sink or swim, you don't have a choice, moment.
You go from having a partner in crime. Someone to process your day with. Someone to go on dates with. Someone to dream about the future with. Someone to make decisions with. To being the person who handles it all. You are now in charge of all the decisions. You are now the sole financial planner, meal planner, plan maker, errand runner, and appointment scheduler. If your spouse's driving privileges were revoked upon diagnosis, you are now the sole driver. And if all that wasn't enough, if you still have kids at home, for all intents and purposes, you are now the sole parent. And you're doing all of this while making sure your loved one is taking their medications, drinking enough water, getting enough exercise, and not burning the house down. To say nothing about managing all that while still holding down a full-time job or career if you happen to have one.
It's why I am dead tired by 8:00 at night. It's why I so often have my pajamas on before we even start thinking about dinner. It's a lot. No matter how you slice it and dice it, this is a lot for one person to handle.
But here's the good news: How you choose to respond is entirely up to you. You can choose to be angry. You can choose to be sad. You can choose to feel sorry for yourself. It's all up to you. As the saying goes, "life is 10% what happens to you and 90% how you react to it."
All that aside, no matter how you choose to respond, it's still a shift. It's a shift that adds on a lot of extra work. It's a shift that gives you a huge weight to shoulder. It's a shift that doesn't come with an instruction manual. And it's a shift where one size doesn't fit all. Because no two Dementia journey's are alike, there is no right or wrong answer to how you move forward. Which that in and of itself is tough.
There were so many times in those first few months where I just wanted someone to say "OK, here's what you do." But they didn't. Heck, all the Neurologist who diagnosed us said was, "come back in six months." No support, no guidance, no resources, no compassion, not even a pamphlet! Just a letter stating that my husband could no longer drive, a few prescriptions we needed to get filled and his parting words to come back in six months.
It was so clear in that moment that what road we decided to take, how we chose to respond, was entirely left up to me--and that life as I knew it was forever changed. And for the record? We did not go back to that Neurologist. I found someone else instead.
