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The Scariest Roller Coaster Ride of My Life

August 8, 2012

In this ride together.

I have always been afraid of roller coasters, the unexpected dips and sharp unexpected turns; the banks that make you feel like you will fall out of the car. The climb up the steep hills always filled me with the impending doom of free falling to the ground.  Wondering when the safety of having my feet firmly planted on the ground again would ever happen.  Would I live through it, or would my heart just suddenly stop from the fear of the unknown?

Nothing has prepared me for the roller coaster ride that I am on now. This roller coaster is called, Alzheimer’s Disease, or Dementia.  I have been riding this roller coaster for well over 6 years now. This scary ride seems to go on and on. I don’t know how long it will last or where it will take me. Some days we coast along on a smooth track, at a comfortable pace, but I certainly do not know when the next uphill climb or unexpected drop will take place.

Today, these hills and valleys, banks and loops consist of doctors, lawyers, creditors, Medicare & Medicaid caseworkers and all of their paperwork and bureaucracy. The dark tunnels are the dark untouchable areas of Mom’s memory.  The place where her life is tucked away and out of touch to the rest of us standing by, waiting and watching and feeling helpless, a place that she is no longer able share with us.   I am totally riding on a new track and I do not know where I am going.  I do not even know how to plan for the unexpected turns and twists.  Then there are the issues of family members, popping in and out like scary holograms, caring, but not committed.   They pop up just enough to let you know they are there, but not tangible enough to be of any genuine help or support, asking no questions  nor offering any opinions  and then at other times asking  endless, repetitive questions filling me with self doubt and even more fear.

Mom may not know that she needs me to be there, she may not understand exactly what is going on with her life, she may even resent my interference, but I am here to see that she safely makes it to the end of the ride. So with my seatbelt buckled, arms up in the air and wanting to scream (for a lot of different reasons), here I am, on the scariest roller coaster ride of my life, for as long as the ride takes.

Only God the “Ride Operator” knows the length and course of this ride!

6 Comments
  1. WOW. I stopped short at the line “Alzheimer’s, or Dementia…” My mom was diagnosed with Dementia about two years ago, according to my dad. He said they explained to them that there was a difference. What have they told you about the two? Are they the same thing?

  2. Beth, here is the way it was explained to me. Dementia is like the word Cancer, within the word “cancer” you have breast, lung, bone, brain, colon, melanoma, and so on. Alzheimer’s Disease is a type of dementia, and there are many types of it. So dementia is a broad term used for memory loss. A true diagnosis of AZ, cannot be declared until after death and the brain is actually ananlyzed. That being said, there is enough research and study done now, that many doctors are making educated diagonises of AZ and treating with proper drugs and therapy while people are still alive. Many people are now donating their brains to science upon death, both healthy and not, so that comparisons can be made, and research improved. I hope that this helps you. I hope your mom is doing well. My advice is to keep her stimulated with activities that encourages her to use her brain in ways outside of her daily routine. Puzzles,crochet or other needlework, painting, word games, learning new things, like piano, or dance, anything that is a new challenge to the brain. I wish you a smooth ride!
    (((Hugs))) to you and your family!

  3. I had the thought when reading that you describe Life. Life itself is ripe with the sense of being on a roller-coaster. We just never know from one moment to the next. Maybe it is my tendency to be waiting for the other shoe to drop. And about people popping in and out but not being committed– I so nod. You describe a situation for many of us not even living with dementia but deal with care-giving. Thanks, dear one.

    • You are so right, my dear friend! Life itself is indeed a roller coaster, one that we are all riding every day. I had to chuckle, that yes I too am always waiting for the other shoe to drop, and then I had a picture pop into my head, “how many times have you driven down the road to see one lonely shoe lying in the middle of the road? I wonder where or from whom, that it dropped?”

  4. Sheila permalink

    Very well written. Carolyn, your strength, endurance & unconditional love is being tested. Being the amazing woman you are, you’ve proven to yourself what we all know & love about you….you’re an exceptionally wonderful friend, daughter, spouse & mother.! While it’s hard & heart breaking to endure a parent being confused & maybe not recognizing us as their child some days, we can have fun pretending to be who they believe we are & still see them smile. They may not know our name or relation, but they sure know they’re loved 🙂 You’re her angel & she is yours. Love ya my friend!

    • Thank you Sheila for your very kind words, you brought tears to my eyes. I so wish there were not so many miles between us! You have always been a very special friend, who has always been there for me in my corner. You and I have shared many stories aobut our mothers, and I know how important your mother was in your life, we both know that she is watching over you from heaven. Thank God for Mothers, and the love that they give us! Love you too, dear friend!

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