I remember exactly where I was when the doctor first said the “D” word to me. We’d had every test run and the results all came back clear, yet we knew something wasn’t right. It had started small. I noticed things that just didn’t make sense. She would forget words mid sentence. She drove past my house a few times. She just did not seem like herself. At first the doctors told me she was depressed. They prescribed a heavy dose of antidepressants and sent us on our way. When that didn’t help, we had tests run.
Lots of them … and then they all came back normal. I was standing in the school cafeteria when the doctor said, “Amanda, I think we might be looking at dementia.” I remember almost laughing, thinking she couldn’t be more wrong. My mom was 56 years old.
Dementia was a disease that happened to old people. It has now been 5 years since our official diagnosis. Even if you had told me then what my life would look like now, I don’t think I would have believed you.
My mom was always my best friend. She was completely ecstatic to be having her first grandbaby. Dementia has robbed her of just about everything. There are days I hate it more than I can adequately describe. There are other days where I fight to accept it knowing I have no other choice.
We’ve walked the road of disability, retirement, social security, Medicaid and now hospice. I’ve had to fight and advocate with doctors who are no doubt a million times smarter than me, yet only see my mother as a number.
We are now five years in. The mother I had before is gone. The person I’m left with is just a shell of the wonderful, strong woman she once was. Her brain cannot process sight so she basically functions like a blind person but she cannot learn how to exist that way. She has to be fed, bathed and changed. Imagine your daily routine. Everything you can do on your own… get up, go to the bathroom, brush your teeth, shower, get dressed, eat breakfast… she has to have every single thing done for her.
This has been the hardest season of my life. Everyday holds new firsts and lasts for us. The last time she knew my name, the first time she wasn’t sure who I was… but through it all I am seeking out a purpose in this. There has to be something more. I’ve never faced a situation as utterly hopeless as this one is. There is no cure, no chance for survival, no hope… but I still have hope. His name is Jesus and for whatever reason He has allowed me to be in this season.
So I want to use this story, my story, to tell you that even when all hope is gone… you are not alone. There is someone who understands what you are feeling, someone who sees the tears you cry in hiding and who knows how your heart is completely broken in two. You are not alone. I am not alone. We have each other. We are caregivers.