May 8, 2012

Dementia Care is not a 9-5 job!

Unfortunately for my Dad he did have hallucinations that night which resulted in 100 mgs of Seroquel being administered. Thus, began my Dad’s downward spiral into a personal hell we are still struggling to correct.

By Ellen Belk
Alzheimer's Reading Room

This is a Call-to-Action to the myriad of ‘service providers’ that litter the landscape of Senior Care.

The operations, organizations and companies that cater to the care providers of the memory impaired.

Please keep in mind, that although your offices may shut down at 5pm each day and are closed on weekends, those of us who seek your help after hours are left to fend for ourselves in serious moments of crisis.

If you aren’t available, where are families to turn in their greatest moment of need?

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As an accomplished dementia care employee myself, I’ve personally guided families after regular business hours. I’ve greeted them at the door on a Sunday. I’ve held the hand of an anxious son, past 8pm on a Friday, when his father was moving in. I’ve answered my phone on holidays and weekends many times throughout my career. Professionally, I’ve made the conscious decision to be available to folks during their times of struggle.

Recently, my professional and personal worlds collided when I got the call from my 83 year old mother on a Sunday, that my dad had fallen and she was in the local Emergency room with him awaiting X-ray results. I, like so many other adult children of aging parents, am a long-distance care provider. I live in the South and my parents, in the Midwest.

On that Sunday, my dad awoke, like any other day. He dressed and had breakfast with my mom in the condo they share. Unfortunately he fell in the bathroom that day, sometime around Noon. Ten days prior to his fall, he’d visited his primary Doctor, where it was discovered that Dad had a UTI. Not uncommon for a man of 82 years. Although the Doctor had commented on my Dad’s noticeable weight loss, he prescribed a strong anti-biotic for the infection. In the days leading up to the fall, Dad had experienced nighttime hallucinations, which we now know may have been due to the medication.

Dad walked into the ER that Sunday with Mom and was able to fully explain to the hospital personnel what had happened. My parents were simply there as a precaution to make sure there were no hidden injuries, to be concerned about. As the hours dragged on, and they were still sitting in the waiting room, it became apparent that Dad would be held overnight in the hospital.

I immediately called my brother and sister, who live in the same state as my parents and alerted them of the situation. Because I’m familiar with how Hospitals treat those, who have hallucinations, I became anxious from long-distance with dread of what may happen if my Dad had one of those episodes overnight.

My brother and I spoke via phone as he drove to the hospital and I instructed him to find out if they ‘medically restrain’.

In an instant, I began a crash course with my siblings, who up until this incident were ignorant of the procedures and methods of an industry that isn’t equipped or trained to handle dementia-like behavior.

As a precaution, I called a well known company that provides companion services with the intention of hiring someone to stay with my dad overnight to ensure his safety. It was approximately 3 PM on that Sunday. The first company I contacted told me point blank that it was too short of notice for anyone from their office to assist. When I asked her if someone from another of their offices could help, she told me she wasn’t familiar with the area and I abruptly ended the call, as I quickly realized this was not going to be an easy task.

Through internet research, I found another office that served the area my parents were in, however was told again, it was too short of notice for them to be of any assistance. Realizing that industry professionals were not going to be our answer; my sister willingly agreed to hold vigil with Dad that night in the hospital. Because the X-rays had been negative, we all thought it would be a one night stay and he’d be home by late Monday.

Unfortunately for my Dad, he did indeed, have hallucinations that night which resulted in 100 mgs of Seroquel being administered. Thus, began my Dad’s downward spiral into a personal hell we are still struggling to correct. Dad had a significant adverse reaction to that medication and by Tuesday, he was unable to speak coherently, walk or feed himself. I arrived at the hospital on Wednesday and he didn’t even recognize me.

I reached out to various Geriatric Care Management companies in search of a professional advocate who would assist my family, when I had to return to my home. Unfortunately, I had to make those calls, after 5 PM, as time becomes your enemy when you are sitting bedside with your loved one all day.

And again, I was hearing automatic answering responses instructing me to call back during ‘normal business hours’. Normal? There is no normal when you are in crisis and seeking help for a loved one.

Our journey still continues and throughout our two month journey, we’ve endured Doctor’s who couldn’t be reached because they were on vacation, another Geriatric Care Management company who couldn’t provide weekend coverage and a primary Doctor who was too busy with patients to return our calls.

Newsflash to those of you touting your ‘Senior Care services’, find a way to be available after hours and on weekends. Because the reality is; crisis doesn’t always occur Monday thru Friday between 9 AM and 5 PM.

Surely, there has to be an organization who will realize this phenomenon and become an industry leader in offering services when the others have gone home for the day.

Ellen Belk is President of Keep In Mind™ and creator of Memory Magz™. Since 2001, Belk has specialized in developing programming for the memory impaired. A mature musician concert band, an intergenerational Senior Prom and a Fine Art appreciation program are amongst her professional highlights. Memory Magz™ are ‘magazine style’ picture publications with full page vibrant images purposefully designed for people with cognitive decline and/or developmental disabilities. As a public speaker, Belk engages the audience with her inter-active style and witty story telling. www.keepinmindinc.com.



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Original content Ellen Belk, the Alzheimer's Reading Room