No Alzheimer’s story is easy to tell, but sharing your story helps. Here’s Nick’s.
For us, it began with a misplaced shoe.
My mom, Sandra Shields, not even 50 years old yet, kept losing the matching pair to her shoe. Many days, one would always go missing. She, an elementary school counselor, once even went to work with mismatched shoes. We laughed it off at the time.
Next it was her keys.
She’d spend day after day searching for those lost keys. Sometimes they’d be right under her nose. Other days, we’d find them in the oddest of places. I’d always check the top of the refrigerator first or occasionally inside. We always had good luck around there.
Soon after it was the constantly busy signal on the home phone. It would always be off the hook. Over time, I grew annoyed with that sound. I began to hear it entirely too often. Little did I know at the time, she could answer the phone but couldn’t always figure out how to hang it up.
At first these seemed like harmless incidents until one day it began to feel too commonplace. Almost routine. Predictable. Worrisome.
A gifted poet, she always had a way with uplifting words. Her ability to turn a phrase to write a poem for a friend or loved one at a moment’s notice was beyond belief. Her poems were inspired, inspiring and always on time for those in need of upliftment and encouragement.
One day, after searching for days to find the right words, she told me she couldn’t do it. That was a first. I tried to help the best I could but poetic prose has never been my gift. It was then that we knew it was time to learn what was going on.
After a battery of examinations and second opinions, we would soon embark on a nine year journey into the painful world of early onset Alzheimer’s disease. An incredible diagnosis at such a youthful age.
After a nearly decade long battle, my mom would pass away in 2009 from the disease. She was 59 years old.
Alzheimer’s is a long lasting disease with its impact extending from the patient to the caregiver in unimaginable ways. Along the way, I do not know what our family would have done to afford her care – especially the end-of-life needs – if she didn’t have a pension.
My mom’s hospice care cost us $5,766 in the last months of her life. Her pension helped alleviate some of the financial burden, but it wasn’t nearly enough. My dad and I covered the difference. Prior to her hospice care we used the money to help pay for an additional caregiver to assist in the day-to-day needs. We spent thousands on her care – all out-of-pocket – and that was before she passed. The funeral arrangements added another significant expense.
Along the way, I wondered how low income families without a pension or a network of financial support could afford the high price to adequately care for loved ones with mental health ailments like Alzheimer’s and other forms of dementia?
It turns out in many cases they simply can’t.
Out of my experience with Alzheimer’s disease grew Green Balloon Foundation. Our focus is on lower income families whose loved ones have been stricken with Alzheimer’s and other forms of dementia. The Green Balloon Foundation, a non-profit organization, seeks to make sure that the only thing families have to worry about is loving their loved one. That’s truly what matters most.