Friday, October 12, 2012

Mom's Story

It's been a year like no other in my family, and I'm not complaining.  I know that all of this...the ups, the downs, the good, and the bad...are all a part of life.  There is sweetness in even the saddest of moments and there is hope even when we're amidst our darkest days. 

I'm writing today as a way of explaining our most recent challenge.  It's a story that's constantly evolving, even as I write this, and it's one that's hard for me to tell.  I hope that my description will help you to understand where I am and why I've been absent and unreliable in so many ways recently.  

My Mother faced a series of health setbacks this year.  She's fallen numerous times; she's had infections that were diagnosed and treated; and she suffered muscle deterioration that was quickly remedied by a three week stay for inpatient physical therapy and rehabilitation. 

As she walked this path, she seemed to be having a problem with anxiety and understandable phenomenon considering all that she'd been through.  She was moody, angry, scared, and agitated frequently; and we were working with her doctors to seek a combination of medications that would provide her with relief without sending her into a trance like state.  Nothing seemed to help.  One medicine after another was tried...dosages were increased...and still no relief. In fact, her condition was deteriorating.  Throughout 2012, it was as if we were watching her go through the aging process at an accelerated pace.

Then last Monday at 3:00 in the afternoon, her anxiety reached a fever pitch.  We tried to calm her, and settle her into bed for an early evening; but in the morning the episode continued.  I brought her to the emergency room at 11:00, and she was again admitted to the hospital for testing.

Exhausted from the weekend, Mom slept without waking for at least 12 hours after we arrived.  She had a moderately good afternoon, and I left at 3:00 to retrieve Alan's report card from school.  When I arrived back at the hospital at 4:30, another "anxiety attack" was underway, and this one proved to be her worst yet.  The nurses were hoping that my presence would help to calm Mom; but she didn't recognize me.  It was almost as if she wasn't seeing me or anyone else at all.  For the next eighteen hours, she repetitively cried for help, called the names of those she loves, and indicated that she was in pain.  She was given high doses of pain medications and anti anxiety medications, and nothing helped.  In fact, the intensity of her attack continued to worsen.

After numerous x-rays, EKGs, EEGs, an MRI of the brain, and a full body nuclear bone scan, her doctors could find no physical causes for her symptoms, and they began to share with us their concern that she was actually suffering from dementia.  The next night was another challenging one for her; but with the light of day new information arrived that's provided an odd sort of comfort to our family. 

First thing in the morning, Janet, my sister in Pennsylvania, told me of a website that she'd discovered .  It's, and it provides an abundance of information on a disease called "Lewy Body Dementia", a name I'd never heard before, and one that was about to play a significant role in our lives.  The website describes, "Lewy Body Dementia (LBD) is not a rare disease. It affects an estimated 1.3 million individuals and their families in the United States alone. Because LBD symptoms may closely resemble other more commonly known diseases like Alzheimer’s and Parkinson’s, it is currently widely under-diagnosed."

With each word that we read about this disease, we began to understand.  We understood the root of all that had transpired this year, and we began to identify the cause of so many of the behavioral changes that we'd seen in Mom over the years.  The diagnosis of LBD is heartbreaking.  The knowledge of what LBD is, its treatments, and its prognosis is empowering.

We learned that the medicines typically used to treat anxiety, pain, and depression...the ones that we'd been using with Mom extensively...can actually worsen the symptoms of an LBD Patient.  Yesterday, Mom's doctors discontinued the use of all of those medications and placed her on an alternative with a better chance of helping her.  And it did.  She slept for about an hour after taking her new medication.  When the nursing staff woke her to test her vital signs, I could already see a difference in her face.  She knew her name again, and she recognized me as "Jean".  We were able to talk, and she seemed to have a sense of peace about her.  In this regard, our prayers were answered.

Mom still has a long road in front of her, and we're approaching it with a new sense of understanding.  She'll remain in the hospital throughout the weekend, and she'll move to St. Joseph of The Pines for at least three or four weeks after that.  We'll use that time to continue to adjust her medications for maximum effectiveness while rebuilding her physical strength. 

I'll continue to update you here as our story unfolds, and I'm hopeful that we'll find our new normal again sometime soon.  Thank you for your thoughts, kindness, patience, and prayers.They mean more to us than words will ever express.

1 comment:

  1. While it may seem like you are traveling alone on this journey of life, that couldn't be further from the have so many that love you and wish your mom the best in this difficult state of health that she is in. Continue updating us with your posts. Perhaps writing about your journey can help with healing and your understanding or embracing of what is happening in the softest possible way. Perhaps it may help someone else as well who is experiencing this with a parent or family member, your insightful posts really carry us through your journey in a bittersweet way.
    It's not easy seeing someone you love go through this, putting a name to the disease at least helps with the direction your Mom should be treated. I can't imagine how you feel but we are here for you any time of the day or night. Love you.