Monday, August 31, 2015

Behind The Veil: The Ugly Truth of Loving Too Much

This is not a story about a romance gone wrong.  I wish it was. That would be a much easier story to write and probably far more entertaining.    Instead this is the first in a series of posts in which I will discuss the things I regret most as a former family caregiver and what can go wrong when you allow your emotions to overrule your business sense when making decisions about caring for a family member

In this series I will share details of my caregiving experience which I have never before shared publicly and are only known by my closest friends.  I will also share advice from experts which I hope will help future and current family caregivers avoid making serious financial and legal mistakes.

Earlier this year PBS aired a documentary called "Caring for Mom & Dad"
which examine the costs of family caregiving.  If you missed it, here's the trailer for that broadcast.  I hope that you will visit their website, read the caregiver profiles, and review and share the caregiver resources.

Watching that documentary brought me to tears because I could empathize with so many of the caregiver's stories.  They were strikingly similar to my own. 
However, even after that documentary aired I was still too embarrassed to tell my own story here on my blog.    Yes, I have shared bits and pieces of my caregiving journey with you, my blog visitors as well as with my close social media friends, but I have always been cognizant of the fact that candor and transparency can exact a high price.  For bloggers and all writers, the cost of  publicly sharing your thoughts is often paid in ridicule as well as the loss of privacy, job opportunities and even relationships.  However, even with the knowledge that what I am about to write may be taken out of context, misinterpreted or, as they say in the legal system, "used against me",  I am going to bring you up to date on my caregiving journey and share the good, the bad and the ugly of what has brought me to this point.

September 30, 2015 will mark the nine year anniversary of my leaving a job,  which in spite of all of its challenges and frustrations I truly enjoyed, to become my mother's full-time family caregiver.  It was a job at which I had: worked for nearly eight years, accrued four weeks paid vacation, excellent benefits; a salary that was above the market average for the position; and earned the respect and friendship of my colleagues.  I had also tucked away the beginnings of a nice little retirement nest egg.  All in all, life wasn't bad, in fact from the perspective of an outsider looking in, my life probably looked pretty good. 

But here's what onlookers didn't see.  Beginning in 2002-03, I noticed that my mother was having problems with bladder control and was becoming mildly forgetful and repeating herself. Her primary care physician prescribed Detrol for the bladder control issue and a low dose of Aricept for the memory issues.  For awhile it seemed that Mom's health issues were under control but then she began having problems with her balance. It wasn't until the summer of 2004 that she was finally diagnosed with Normal Pressure Hydrocephalus. 

As the symptoms of my mother's NPH began to worsen I was finding it increasingly difficult to juggle her care needs, the maintenance of the house, and the demands of my career.  In attempting to do so, my own health was suffering to the extent that in 2003 I was briefly treated for clinical depression. And in November of 2003 my primary care physician had me undergo cardiac stress testing, a sleep apnea test and a cardiac catheterization to determine why my heart was beating so erratically. Fortunately,  it turned out that what was officially diagnosed as pulmonary hypertension was a minor heart arrhythmia, a condition which had been diagnosed during a routine physical during my time as student at Emerson College, having been exacerbated by the rapid and dramatic weight increase brought on by the depression medication.  It was a health scare that reminded me of my mortality and gave me cause for reflect on what I truly wanted for the second half of my life.

The solution to my health scare: restructure my life to better manage the stress. 

In the summer of 2004 Mom's primary care physician referred her to a neurologist who after a series of MRIs determined that my mother had fluid on the brain, a condition known as Normal Pressure Hydrocephalus.  On the one hand, I was encouraged to learn that Mom did not have Alzheimer's and there was a possibility of treating her condition with shunt surgery.  On the other hand, her prognosis without the intervention of shunt surgery was no different than Alzheimer's Disease.  The news could not have come at a worse time for either of us.  Before Mom's diagnosis, I had been in the process of repairing my credit and taking the steps towards buying a house and planning for my own retirement.  After her diagnosis, I was faced with suddenly having to make financial, legal and healthcare decisions for an adult who had always managed all of those things herself. 

After approximately a year and a half of weekly sessions with a wonderful psychologist I was able to discontinue the use of the depression medications.  I would continue counseling through 2004, a year in which I filed for personal bankruptcy and began developing a plan to live on a strict budget, build my 401K savings, a move forward with building the life of my dreams.  But that never happened.
In early September of 2006 I would make the decision to resign my position,  place my career on hold, and become my mother's full-time caregiver.  The plan was: to spend quality time with my mom while she was still physically mobile and mentally aware; to significantly downsize our home; to relocate with my mother to a residence with lower maintenance in a more affordable community; to place the proceeds from the sale of the house in an account for my mother's long-term care; and to have all of this in place so when the day came when my mother passed away, I would have time to grieve and then move forward with my life.  Even today, as I read this, it seems like a good plan.  However, the plan failed not because it wasn't a good idea but because at during points along the way I allowed emotion to overrule my better judgment. In short, I made decisions that I would have never made it they hadn't involved my mother. 

I will continue with more in this series later this week.  In the meanwhile please watch this video: "The Toll That Caregiving Can Take". 

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