Thursday, May 29, 2014

Yeesh... Everything but what is truly important. Is this the path to self destruction?

She utterly baffles me and simultaneously breaks my heart.  It makes me sad to say that, and not in a mother-daughter way, but the feeling I would have elicited by any client I have worked with over the years.  

As I keep telling my staff, there are two overarching tenets to case management/social services.  

  1. You cannot want 'it' more than the person themselves does...
  2. You cannot assist someone in spite of themselves.
With those two touchstone observations as the perspective in which I am dealing with this, onward to the latest installment of utterly CRAZY.  

For those new to this blog, as with many folks who engage in compulsive hoarding at this level, the stuff is a side effect of the power and control issues, her addictive behaviors, and her narcissistic/borderline personality disordered behavior.  It is so hard to filter through what she says, since she makes minor or inconsequential things HUGE things, and important things are often not shared until way past critical mass.

So- the latest installment of 'cannot get out of my own way to be my own solution to save my life...'

Since February or early March my mother has been complaining of headaches, and had a siege where her jaw hurt so badly that she could not open her mouth wider than 1/2-3/4 inch.  She was passed back and forth from her primary care doctor to her dentist and referred to her ear specialist.  Long story short, partially due to her refusal to follow process and allow electronic referrals, records to be sent, etc. she made what was really poor follow up and communication come to a complete standstill.  I also realize that the recollection of events I am getting are what she chooses to share with me, so again, who really knows what is actually based in reality.  I do not think she receives the greatest of health care in her small Appalachian state, and her mental health and behavior are definitely a barrier, and the fact that she is an isolated, elderly woman with Medicare.  I have offered to come pick her up, put her up in a hotel nearby, and take her to John Hopkins Medical Center in the past.  She flatly refuses.  

During this nearly 3 month ordeal, she has made things more difficult by:
  • Refusing to give all her providers similar information
  • Refuses to allow electronic referrals or prescriptions to be sent
  • Refuses to allow the doctor's offices or medical facilities to transmit records, she picks them up, reviews them and picks through them
  • When she calls a medical provider, if she gets voice mail she most often refuses to leave a message
  • She has never set up her voicemail on her land line, and has her answering machine disabled so she only knows who calls by caller ID, and she does not want anyone to know she has caller ID
  • She refuses to give out her cell phone number to anyone, and does not keep the phone on or check the voicemail
  • If a provider does not respond in the manner she deems appropriate and quickly enough, she launches a scorched earth response
  • Yesterday she called her ear specialist, and in a very condescending and sarcastic manner, cancelled her appointment that her PCP had moved up 5 weeks for her as he thought she had an infection in her mastoid bone at the very least
  • She scheduled with an 'older doctor that knows something' for today (which is the day she was supposed to go to see the ear specialist)
  • She arrived at her PCP today unannounced an hour before an appointment that would take a half hour to drive to, demanding copies of medical records, and stormed out when the office person informed her that she was busy and that (mother) would have to wait
  • Her gums started to spontaneously bleed and she said nothing
I could write a book on this... and it feels as if I have.  The older doctor told her that he did not feel he had time for a biopsy, but she had 13 of the 20 symptoms of Temporal Arteritis so he was starting treatment with massive cortisone doses.  Upon researching this a bit, and having a bit of background working in medical case management with folks with TA, her assertions from today do not line up.  But with TA there is a real threat of blindness or stroke if untreated.  She has an appointment with the doctor she sees in a nearby city to manage her rheumatoid arthritis and lupus.  

She mentioned it in the 'I am so mistreated and shat upon' way that she does, then she was off to complaining about her neighbors, attempting to gossip, and her normal negativity.  She then mentioned suing all the doctors involved to this point.  Ugh.  

Do I know firsthand that medical malpractice and terrible errors happen with the most consistent and reliable of patients?  Yes.  And medical providers are human too, and they make errors.  I also know that her combative and paranoid behavior makes treatment a crap shoot at best.  No one wins.  And she refuses to see any other perception than the one she stubbornly clings to, even in the face of facts.

I am not sure how this will play out, and it may be one of her 'Chicken Little' episodes that will be anticlimactic as she moves through the process.  Time will tell, but this is a situation that she may have made much, much worse.  

I know she will not allow anyone, including me, to do anything meaningful for her.  Whatever happens, if anything does, it will be partially consequences of her choices.  Choices that include piling her home floor to ceiling with crap, and forcing anyone out of her life that would be willing to help her... including me.  

Hoarding... no one wins.  NO ONE.  Thank you for reading.


  1. The more I read about other people's experiences with hoarding parents, the more I am convinced that there is something mentally off with each one of them, as is the case with my HM. I have also had experience with a MIL with bipolar disorder who was her own worst enemy when it came to healthcare. Her doctor had so given up on her due to her hysterics, imagined diseases, and refusal to take her medications that he misdiagnosed her lung cancer as bronchitis for close to 6 months (she died 5 weeks later). I don't think he's a capable doctor for many reasons, but treating mentally ill patients has been shown to be very hard for even the good doctors.

  2. TC:

    You are absolutely correct. This is such an insidious and personally pervasive disease, and it ends up consuming everything. Including the hoarding person. Having worked in psycho-social medical case management for a number of years, I know the difficulty providers have in 'peeling the onion' to get at the underlying issue. It is a task I do not envy. I am so sorry it had such a disastrous outcome for your MIL. Thank you for reading... as I keep repeating... no one wins. There has to be a better way. Has to. Have a great week!