Life gets turned on it’s head. (That’s the simplified version of what happens!)
Life before dementia seems like a distant memory.
Tara Reed and her parents – Lake Tahoe, NV 2007
It comes on like a subtle fog – barely perceptible until you are engulfed and can’t see two feet in front of you. The world goes gray as you struggle to get your bearings, to feel like you are on solid ground…
I close my eyes and picture my dad when he was “himself”… sometimes people question me when I say that, countering, “If he’s not himself now then who is he?”
My dad is a shell of the man who raised me. A twisted visual of the father who patiently worked through math problems with me at my desk when what I really wanted was the answer so I could go back to “important things”. Now the memory of the exercises, his drawing the cars with the arrows, helping me to visualize it and learn to work through the problems feel like the important things.
If one car is coming east at 60 mph and the other car is going west at 90 mph and they begin 120 miles apart, at what point will they pass?
Dad – who knows! Will there be a speed trap along the way to stop the one going 90 mph and how long will that take? This is impossible!
Memories of math problems are not nearly as impossible as watching your father slip away – his memories, his abilities, the bulk of his body… Changing from a strong, confident and happy man to a frail, delicate frame that just watches life with the wonder of a newborn who has never seen these sights before…
It’s been 4 years since the diagnosis.
I’ve been through every emotion and back again. I’ve cried and wailed and begged for relief… for the journey to be over, knowing my dad wouldn’t want to live like this. But we don’t get to choose.
I’ve felt helpless – like everything is out of my control.
I’ve tried to control everything – if I can’t control the disease I can control the cleanliness of my bathroom at least and scrubbed and scoured in the hopes my pain would leave with the dirt.
As time has gone on, I’ve learned to soften. I’ve learned how to work through the harsh and angry emotions and come to a place of peace. I’ve fallen back and forth between despair and resignation more times than I can count.
I’ve learned what I can control and plan for and I’ve done the very best I could.
Many of the things we can control are the very things we don’t want to face, to talk about or even consider.
When my dad was diagnosed I had to have a lot of uncomfortable conversations with my mom. My sister, brother and I needed to understand their financial and legal situation so we could help her plan for the future. Money hadn’t been a topic of discussion – we talked about the importance of planning for the future and saving but not about what my parents had specifically. This was just one of many things that came up along the way.
We also had to talk about things like what we would do in an emergency or end of life planning.
We’ve been learning how to handle falls, incontinence and bed sores. The list of things I’ve learned in the last 4 years is staggering…
Our Alzheimer’s journey has brought a lot of amazing lessons too.
I’ve learned the power of love and compassion in the face of an incurable disease.
I’ve learned the resilience of the human spirit and the our ability to dust ourselves off and move forward no matter what.
I’ve learned the strength of my family and felt the love and support of my friends.
I’ve learned and I’m learning, as everyone on this journey is too. Our story isn’t over, we just enter new phases with new lessons waiting, both challenging and rewarding.
While no one can change the outcome of dementia or Alzheimer’s, with the right support you can change the journey.
– Tara Reed
