“Family members of someone with dementia grieve not only the loss of the person they know, but ultimately the death of someone they don’t know.”
– Amy Tucci is president and CEO of the Hospice Foundation of America
(No Picture Needed Here)
While skimming the newspaper this morning, I came across an article by Amy Tucci.
Anything and everything about DEMENTIA and ALZHEIMER’S screams out at me and stops me in my tracks. So, even knowing I was about to leap headfirst into disturbing territory, I don’t mind telling you, Amy’s opening line caught me totally off guard.
After reading and rereading it, my immediate reflexive reaction was to grab a tissue and use it to soak up the tears that seemed to come out of nowhere. It ended up being a three tissue, crying-up-a-storm, event. I halfway expected a TV weatherman to appear and issue a warning to everyone in the world to take cover.
After what seemed like forever, the dark clouds moved on, and I was able to take the proverbial three deep breaths. The next thing I did was to try and get my arms around why that opening line packed the punch that it did, after all, I am a seasoned caregiver of four plus years. I have had plenty of time to come to grips with thoughts like the one above, not only with my mom, but with my dad and sister, too.
So, as I sat alone, trying to figure out what just happened, a welcome ray of sunlight entered the room, and the tiniest rainbow I have ever seen appeared just beyond the tip of my nose. No joke! It was a real honest to goodness miniature rainbow … just like in the Wizard of Oz, only small, small, small.
Get the picture? Do you hear Judy Garland singing in the background like I did?
Somewhere, over that little rainbow, I saw mom, not as who she was, or who she will inevitably be, but as she is now. OK, so she is not the mom I knew, but you know what, she makes up for that because of who she is!
On any given day, or moment, she will tell you she is six, or ten, or twenty-one, but never, never, ever ninety-four.
When asked, she’ll tell you her hair is green, or orange, or pink. The only thing for certain is that it is not pure white, which it is.
She is determined and passionate about her desire to marry me. She ask me if I will or would all the time. I deftly change the subject by pointing out something shiny.
She refers to me as her boy or her girl. She uses these words interchangeably, but I can live with that.
Whether I am her boy or her girl is of no concern, what matters is she knows I am hers and that her never ending love for me is the undeniable foundation of our relationship.
The best is when arrive with a, “Hey Momma, Momma, and she lights up and ask, “Is that you, Tom Laughon?” That’s a day maker!
She is joyful.
She is funny.
She doesn’t cry.
She sings made up songs like no one I have ever known. And, when I sing, or we sing together, she claps her hands and rocks to the beat.
She holds me so tightly that I have pry myself loose from her hugs. And, if truth be told, there are times I want her to keep me in her grip forever. You can feel the strength and determination that has allowed her to take a leading role her entire life.
See the little rainbow? Hear the music? Feel the beat? Life. Love. Reflection. Refraction. Real. Illusion. Always a continuous spectrum colors.
There is so much to be grateful for that lies between the “Family members of someone with dementia grieve not only the loss of the person they know” part and the, “but ultimately the death of someone they don’t know” part.
The infinite memories and full spectrum of emotions mom triggers, the rainbows she continues to create … fleeting though they may be … are real and are to be treasured.
Somewhere over the rainbow … when sunlight encounters tears …
Get the picture?
“what matters is she knows I am hers”….yes, beautiful and fortunate you are. I love your Mom and you, who loves her the way you do. God Bless you both eternally!
Wow! Beautiful Dad…I think this is one of my favorites that you have written …so true so true…
Tom – I do see that tiny Rainbow…thanks for showing it to me!
Blessings galore!!! What a special gift your Mom is…just a bit different from the real memories of your Mom when you finally realized what an amazing person she is!! She is a treasure!! Love her always…she is your Mother!!!
I know it is hard to deal with demetia in your mother, but it seems that you do it very well. I had the same thing to do. But I was not Mama’s care-giver, since my step-dad was still with her and my sister was very close by. We had to get some hired help also. But as difficult as it always is in such cases, you are blessed much more than most loved ones of dementia patients, in that your mom still has her ability to communicate, sing, and show love to you and others around her. And while her grasp on what is real may not be accurate any more, her radiant personality apparently is still shining through, despite her affliction, and she is almost 95. In my somewhat limited experience with her in Gainesville, and on a visit to Cheswick while married to Jo Nez, I always thought she was not only very intrelligent and knowledgeable, but that she also had a terrific personality.
I am continuously glad that many of her very fine qualities have still not been conquered by the dementia, and I really do appreciate your sharing about your journey with her through this chapter in your lives. There is no telling how many people you are helping who are now, or will eventually be dealing with a similar situation.
Thanks and may God bless you, your mom, and your whole family,