Expect the Unexpected

"As it is written in Isaiah the prophet: '

I will send my messenger ahead of you,

who will prepare your way.'"

~ Mark 1:2

My mother shared with me her suspicion that Dad was developing dementia while we were at lunch one afternoon in 2017. She started the conversation by stating that she didn't want him driving into the city anymore because he "wasn't as sharp as he used to be." They traveled a fair amount both locally and long-distance, having fun exploring and, for Dad, doing genealogy. The city where I lived at the time was only 25 miles from them. How bad was Dad cognitively that Mom was afraid of him driving that short a distance?

We went to the house after lunch and I paid close attention to Dad. He seemed fine to me, but I trusted Mom's observations, ended my lease, and moved a street away from my folks. I wasn't going to live with regrets. I wanted to spend every moment I could with my parents and help them as much as I could. Thus began my search for everything I could learn about dementia.

It took a couple years, but Dad was officially diagnosed with vascular dementia. Professionals I spoke with, websites and books I read, documentaries I watched - all said the same thing: dementia is different for everyone. I thought this was a cop-out, a way to save time or space by not diving into the nitty gritty of the illness. Why wouldn't anyone tell me what to expect with Dad, especially on a daily basis? Where was my messenger to prepare my way?

My messengers were all around me. I just didn't like the reality of what they said was coming: the unknown. I've always been a planner. I don't like surprises. I have OCD (yes, an actual diagnosis). I like to know what to expect. The only specific thing any of Dad's doctors would tell me (and several told me this) was that he would likely die of a heart attack or stroke before the dementia took his life. He would likely make it 5 years or so after his symtoms began and he would most likely get aggressive as the disease progressed. That was the extent of the advice on what we would most probably see with Dad.

Dad lived 8 years after his symptoms started, praise God! He never got aggressive, praise God! He was smiling until the end of his life here on Earth. I have a photo of him six days before he died, sitting in his chair in the living room, smiling. Our pastor came by to anoint him and he said, "You know, I'm not an expert, but he seems rather alert and fit to be as close to death as you say." I answered, "Yes, his hospice nurse said he's an anomoly - she's never seen anything like it - but he hasn't eaten or drank anything in two weeks. He's on his way Home." Dad was able to walk until 48 hours before he died. He lived a long, fruitful, happy life with vascular dementia. We went on adventures almost daily, we worked on puzzles and games until about two months before he died. He enjoyed life to the full, up to the last couple days of his life, and even then, his last words were delivered with a smile, "Oh, I'm fine!" He did forget who we were to him but he never forgot that we were his people, as he called us, and that we loved him and took care of him.

I thought I would become a messenger for caregivers and families of those with dementia after Dad died, to tell them exactly what to expect on a daily basis. And so I am...but the experience I had with my father lends itself only to this truth: expect every day to be different than the one before. Expect God to take care of you and of your loved one, but make sure to take care of yourself, too. Reach out for help when you need it. Be your loved one's best advocate - and your own, as well. Expect to feel moments of joy, times of grief and sadness, and try to keep a sense of humor. Expect the journey to be hard and challenging - and to also be the most rewarding thing you will ever do with your life. Pray unceasingly. Find things to be grateful for every day. It will make all the difference.

Lord, thank you for helping me when the journey gets hard. Help me be at peace with uncertainty and challenges, knowing that you are with me through it all, and will see me through it all. Thank you, Lord.

I love you! Amen.

Daddy, happy one week before he died.