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Expert Blog

Real Hero Among Us

June 3, 2015

I feel raw. And vulnerable. And exposed. And helpless. And lost. And found.

There are always so many emotions pulsing through me; I can’t seem to get a grasp on any of them. At any one time, I feel as if I could explode in anger or crumble in a fit of tears. Every touch, every sound and every thought seem to be magnified and significant. There is no “down” time. I am “on” all the time. I am cognizant of what needs to be done. I am aware of my shortcomings and my new strengths.

I am told over and over my feelings are normal. Our situation is abnormal, but somehow I am managing in a typical way. I am told how sad our story is. I am told how strong I am, how amazing I am, how great I am doing. Am I? Am I the mom my kids need? Not the Mom that everyone thinks is fabulous, but the mom that is going to help them navigate well enough so that they aren’t scarred beyond help?

There is another caregiver in our area, Christy, who is amazing. Not the amazing I am, but the REAL amazing. Her son graduated from college last year. Her husband, Don, just turned 50 and has younger onset Alzheimer’s Disease. He is participating in a clinical trial, so that all of us will benefit. She and her family fundraise tirelessly year round for the Alzheimer’s Association and Multiple Sclerosis. They speak on a local radio program to educate people about the perils of this disease. Her goal? To live long enough to take care of her husband. She has MS. She fights every day to walk and breathe and be and she does it without complaining and while being grateful. She does it with a beautiful smile and an aura about her that screams warmth and love. I am in awe of her.

This world is made up of so many wonderful entities. Beauty surrounds us daily. But we must be able to see it with our eyes and our mind. There are times now that I cannot see the beauty within or around because I am surrounded by my own myriad of negatives: money, time, energy, sorrow, death, frustration, resentment, utter darkness in the middle of the night that seldom brings relief.

My children are 11 and 14 years old. Our 11 year old son, Brad, does not remember a time without Alzheimer’s Disease reeking havoc on our family. Even though we may still have a much longer and harder road ahead of us, it breaks my heart that he can’t remember the wonderful father Jim was. He doesn’t recall the countless hours of Jim sitting with him reading books and playing Legos and going for walks and bike rides and playing in the yard and working together on some project around the house. Our 14 year old daughter, Frances, has sporadic memories, but they seem to fade more and more. There are times she can picture in her gifted mind the love they shared and the special moments spent together. They were very close.

And it hurts. For us all. Not remembering hurts. Remembering hurts. Watching his decline hurts. It never ends and yet we are expected to continue on with our lives as if we are okay - as if we can sustain the heartache for an unyielding amount of time and emerge whole and unbroken. I am broken. I am never going to be whole again, and I have the constant worry that my children won’t be either. A piece of all of us is taken away each time Jim succumbs to another tangle blocking his abilities and taking another memory, another name he can’t find, another evening spent watching his family from the sidelines.

How can I survive this Hell? How can I keep my own sanity? It is a battle I fight each and every day. With no timeline and no roadmap, I will muddle along with the hopes of helping myself as I help others. I will take a page from my friend, Christy, and hope I survive long enough to take care of Jim and the kids.

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