Mimi’s Caregiving Commandment Number Eight: Learn Every Bureaucracy

The most frustrating part of taking care of my parents was navigating whatever bureaucracy of the moment confronted me. And there were many of them including insurance companies, Medicare, home health, caregiving agencies, emergency rooms, dementia units, respite care, and on and on.

One of the early challenges occurred prior to moving Mom and Dad from Chicago to Denver. They were living in an independent living unit in a continuing care facility when Mom fell down and was sent to the ER and then on to the ER’s adjoining hospital.

A three-day stay in the hospital entitled Mom to move on to recover at a rehabilitation center that Medicare would fund for 100 days as long as Mom “continued to improve.”

Ultimately I decided to place her in the rehabilitation center of the adjoining continuing care facility where she and dad were residing in an independent living unit. We continued to employ our own caregivers who were taking care of Mom before she fell.

My job when I arrived in Chicago was to figure out what was going on and to see if Mom’s needs were being addressed.

It was apparent to me that this was not happening. Mom, who was on more than twenty medications a day and, in between the daily living activities of eating, dressing, bathing and toileting administered by her caregivers, was basically sleeping either in bed or in a chair. Mom’s doctor had visited her once but despite my efforts to communicate with him, there were no responses from him.

Ultimately I figured it out, but it was not easy. There were several components to the unit. A director and his assistant were “in charge” but after many futile attempts I was still unable to make contact with either. The caregivers administered Mom’s pills and checked her vitals and did nothing to encourage her to be a part of the unit’s activities. The caregivers differed from day to day and they seldom reported on more than the fact that “she ate well.” Though Medicare entitled Mom to receive home health services including physical, occupational and speech therapy, the only therapist I met was the speech therapist and Mom had already been diagnosed with a form of dementia that prevented her from speaking!

It took several days before I found my lifeline, the social worker for the rehabilitation unit. She seemed to be the only one who could speak to me and who understood how to try and improve Mom’s situation. Ultimately she arranged for a meeting with all the professionals and with the family to assess Mom’s current situation and to move forward from that point. It was a helpful beginning that came too late to work. A this point we had decided that moving Mom and Dad to Denver would be a better means for supervising their care.

Throughout caring for my parents, I continued to have difficulty finding the right “lifeline” that could look at the entire situation and plot a strategy. I came to believe that I was the one in charge and that only if I could figure out the system would I have the kind of results I wanted and that I thought would improve the quality of life for my parents.

 

Mimi Pockross Biography

Mimi Pockross has been a freelance writer for more than thirty-five years.  She is a graduate of the University of Illinois and Northwestern University.  She has published many articles on the arts, education and family and is the author of two books.  Her latest book is The Takeover: An Unexpected Caregiver’s Story in which she writes about becoming the primary caregiver for her elderly parents.    The mother of two sons and the grandmother of two boys, Mimi lives in Denver and Vail, Colorado with her husband of forty-nine years.  She is also the author of Shopping for a Living: A Memoir on Merging Marriage, Motherhood and Merchandising.

The content of this article and the opinions expressed are solely those of Mimi Pockross and do not necessarily reflect those of AARP or any of its affiliates.