I have a confession to make. One of the most difficult parts of my day is when I first wake up. Those groggy moments in the morning when my body is shrugging off sleep and my mind is focusing on what lies ahead. This isn’t the case when I’m on vacation or away visiting friends. But when I wake up at home, there’s a part of me that wishes I were still asleep. Because when I’m asleep, there is no Alzheimer’s. There is no memory loss. There is no struggle for words. There is nothing chipping away at my Father, stealing pieces of him.
Every single one of us has an innate need to hope. It is part of our internal makeup. We wake up with the hope of a good day. We have hopes for our families, our jobs, our dreams and our future. Hope is like water or oxygen. You can’t live very long without it. And in all my short years on this earth, I have learned there is nothing that sucks the air out of your sails faster than when a loved one has Alzheimer’s or a terminal illness.
When someone close to you dies, there is shock, grief and deep sorrow. But there is a definite line of demarcation. Your loved one was alive and now they’re not. You celebrate their life, cherishing the time you spent with them and you somehow learn to pick up the pieces and live without them. But when a person has Alzheimer’s, it’s like slowly pulling the bandaid off a wound, rather than ripping it off in a single second. It’s like some evil imp plunges a syringe into my Father every night while we’re all sleeping, extracting his words, his mobility and his personality. You wake up in the morning wondering what is still there and what may have been stolen away.
So what is a person to do?
You recalibrate your hope. You take your currency of hope to the bank and when you’re told it isn’t worth what it once was, you find out what you can get for it. You can’t purchase Park Place or Boardwalk, but you can buy Pennsylvania Railroad, Water Works and Mediterranean Avenue. And you choose to be grateful for what you have.
Instead of hoping that my Father will live out his last years free of Alzheimer’s, my hope is that he will always remember his family. I hope that he never loses his tender heart and desire to help others. I hope that he stays independent for as long as possible. I hope that we never have to put him in a nursing home and he can spend his final days at home.
I’ve learned that you can’t just embrace the person. You must embrace the disease. And by that, I don’t mean you have to like or welcome it. But you must accept it, understand it and prepare yourself for the stages to come.
Some people have hope in hope itself. But to be honest I never quite understood that. If I’m going to have hope, it must be in something more powerful than this disease. Right now there is no cure for Alzheimer’s. So my hope is not in medicine. It isn’t in research or the $50 million Bill Gates donated to help find a cure.
My hope has to be in my Father’s Creator. It has to be in the One who fashioned him in my grandmother’s womb, who knows him inside and out and who loves him more than I ever could. It has to be in the One who has plans to prosper my Father and not to harm him, plans to give us hope and a future. It has to be in the One who tells me to be joyful in hope, patient in affliction and faithful in prayer. It has to be in the One who holds everything in His hands and promises to work everything out together for our good.
When I wake up in the morning and wish I were still asleep, I’ve learned the sooner I realign my thinking, the better. If I give Him the despair, frustration and weariness, God begins to fill my heart with hope. Even if I have to grab an index card on my nightstand with God’s Word written on it and read it aloud, when I agree with what He says, my perspective completely changes.
My Father has had this disease for 14 years. Yet he can play percussion and keep double time with musicians, recalling the words to numerous songs. He can eat his own meals and brush his teeth. He can carry on a conversation and tell tales from his early days on the farm or in the Air Force. And he still knows my name. I’d say that’s a lot to be thankful for.