I bet you didn’t even realize you were holding your breath.
I know in this moment it doesn’t feel like it, but you are going to be okay. You are going to figure this out.
Be still and feel your own heart beating. Listen to the sound of your own breath. Feel your feet planted firmly on the ground beneath you.
You got this.
I know it seems daunting. You know what this disease does to people. Maybe you’ve even witnessed it firsthand with a grandparent or other loved one.
Make no mistake, it is daunting. And it is much different when it is your mom or dad. But remember, the changes don’t come all at once. The decline doesn’t happen overnight.
In this moment, you feel overwhelmed because you assume you have to have it all figured out right now. But you don’t. You have time.
Take this disease as it comes. Yes, you should prepare for the future and in planning for the future, you should plan for the worst. But you should also be hopeful that the worst may never come.
There are many parts of this disease which you may never experience. There is no need to stress over a problem you may never have.
Don’t close yourself off to the emotions of this disease. Guilt. Anger. Resentment. Grief. Gratitude. Allow yourself to feel it all. Sit with these feelings for a while. Get comfortable with them. It’s all normal. It’s all okay.
Don’t expect anyone in your life to understand what you’re going through. Unless they have been through it themselves, they won’t. That’s okay. Don’t push them away. Allow them to be your escape. Go to them when you want to talk about anything other than Alzheimer’s.
Embrace the strangers you meet online who do understand what you’re going through. Allow yourself to connect with them. Exchange phone numbers with them. Send cards to them. These people are your lifeline. They will provide more support than anyone you know in real life.
Take pictures and videos. Lots of pictures and videos. Save voicemails and birthday cards. Save little notes your mom or dad has written to remind themselves of your birthday or when their favorite show is on.
Do all of the things you’ve ever wanted to do with them. Lunch, shopping, movies. Take trips. Go to the zoo. You will never regret spending too much time with them. You will never know how much you’ll miss these things one day.
Be patient. Be kind. Have empathy and compassion. But on the days when you don’t, the days when you cry or snap or yell at them, forgive yourself. You don’t have to be perfect. You just have to be there.
I know it feels weird when you’re 25 and you hold your parent’s hand to walk through the mall so you don’t lose them. Do it anyway. Because you will lose them, in more ways than you can count, and you will always be thankful you held their hand that day.
Never stop talking to them. Never stop telling them about your life. Never stop asking them for advice. Even when they don’t understand or can no longer respond. They are always listening. They will always care more than anyone else.
There will come a day when your mom or dad doesn’t know who you are and it will suck. There’s no denying it will suck. It might be one of the hardest days of your life, but you will get through it.
And somewhere down the road, I hope you learn that it doesn’t really matter whether or not they know your name. They know your heart and soul and love. They know your voice and your presence. They know you love them and care for them. They know they are safe with you. They know YOU, even if they don’t know your name.
This is a long and difficult road. There will be many dark, ugly days. You will feel defeated and helpless and hopeless. But there will also be days, or at least moments, of joy and beauty and light. There will be moments of clarity and nuggets of hope. You will learn to cherish these times, to embrace them, to seek them out.
Don’t get me wrong. There won’t always be a bright side. Most of the time you will be so thick in the muck that you have no choice but to sit in it for a while. You don’t have to be positive when you feel like shit, but you also don’t have to give up. Don’t you dare give up! If you don’t, you will experience a love and a bond with your mom or dad that you may have never experienced otherwise.
Just keep breathing.
This journey is going to change you.
A bond like no other.