Meme time again, sent to me by readers!

When is enough, simply enough?

The title is a rhetorical question... on two levels.  I will start with the larger question.

In the past few days, an 11 year old boy was found by a deputy in North Carolina.  He was handcuffed to the porch, and had a dead chicken around his neck.  The video on the story can be viewed here.  You might be saying... "How terrible... Lisabeth... how does this relate?" Bear with me a minute.  If you have the iPad or iPhone app, look at it on CNN/US.  Also, in an AP link that for some reason is eluding me... the information contained in the initial CNN mobile site story is there.  So, between the 3 stories referenced here, and the countless others I have seen over the past little bit, the "Cliff's Notes' are as follows:

• The perpetrators are both 57 years old.
• They have 4 adopted children, and one foster child.
• The foster child was the one who was handcuffed to the porch with the dead chicken around his neck.
• The woman in the case is a SUPERVISOR at the area DSS.  She is a Department of Social Services SUPERVISOR... Let that sink in for a minute, eh?
• The police officer that made this discovery was actually enroute to another house when he spotted this.  This was a discovery of misadventure.
• The man was not cooperative upon being contacted, and one of the kids opened the door and released a dog that chased the officer to his car.
• When the officer returned, the child was in the house, the chicken was on the porch...
• In the CNN mobile app this morning (11/17/2013) both a law enforcement official and a member of the press stated that the situation was one of utter misery and squalor.  They remarked on the animals running in and out, and the farm animals roaming on the property.  The entire place stunk of feces and urine, and there was lots of junk...

So- in a word... HOARDERS.  And no one said the word.  And the woman?  In the management chain of DSS.  Wonder how many other children she damned to a life in the shadow of the hoard?  Besides the 5 that are now in CPS custody out of state.  

The upshot is, until all of us as community members make our elected officials, our members of law enforcement, our first responders, et al aware that we consider this to be a form of child maltreatment, and we continue to advocate for the children, there is little hope of a child escaping the hoard without significant trauma, and some do not escape at all.

What can we do?  Advocate.  Loudly.  Many of us, vociferously.  We can contact our housing multidisciplinary teams.  We can contact the Area Offices on Aging, find Hoarding Task Forces, or demand they be assembled, and demand that the focus not be solely on the hoarding person, but on on those in the home as well.

So... switching gears slightly.  I know I have been rather 'on' or 'off' since my surgery in August.  I am still healing, and long story short, things have continued to not be what I would call 'linear'.  

Some of the challenges I have been dealing with include:

• Continuing to lose muscle mass and drop in weight.  I went down to under 112lbs without trying to.
• Attempting to catch up and dig out at work, and it has been hellishly busy, and I am still buried from 2 months off.
• I had an allergic reaction because I am an idiot, (I ate turkey pepperoni despite a text warning me as I was flying low from NY to my best friend's home for his daughter's 3rd birthday party.  I saw the gist of it, but did not connect the dots.  Luckily, I caught it within 3 minutes, purged the 2 slices, and got liquid Benadryl caps that I opened and swallowed immediately.  No epi pen needed... this time.  Now however, I am hoarse, (had NO VOICE for 3 days) and appear to be dead with a cold, although it is not.
• Went to my specialist who was not aware of the events since June and July.  She FREAKED on me, screaming at me that I was underweight (duh) and needed to gain 12 pounds NOW.  (Double duh).  She disagreed with some of the surgeons decisions, and set me up for nasty and unpleasant tests.  On the positive side, she took me off 2 meds, decreased one in half, and said I should start gaining weight.  I have!  I am staying between 115 and 117 for right now, and I am actually hungry.  And eating!  And now I actually have some energy, and my sleep/wake schedule is resuming somewhat a normal rhythm.  I am losing my 'bracket face' and have resumed the gym, today I did three miles on the stepper.  Not much, but a start.
• My nerve damage issues have continued to be on or off.  Travel, eating, illness, med changes... it has been UGLY.
• I had a thyroid/parathyroid tumor scare.  It is not totally resolved, but it is not the frightening issue presented to me last week.
• Once I am back to near 100%, I will be scheduled for another bone scan, and hopefully, a genetic test to look for BRCA 1, BRCA 2, and other cancer indicators.

Again, I do not need a 'wahbulance' but life has not been all rainbows and puppy dogs for Lisabeth, and I did not expect it to be that way.  I am grateful to be here, to be back at work, to be cancer free.

So... where the piss off at my hoarding mother dearest occurs... 

Last night I attended the wedding of friends.  It was beautiful, and fun.  The reception ended 6 hours later, and since it was relatively early, and I had not talked to her in a few days, I called.  

The call consisted mainly of:

• Her commenting on how hoarse I sound, and using that as a springboard to talk about her many maladies and to ask bizarre questions.  I will spare you the questions, but they are of the type that comes from someone with nothing else to do but look at every bump, lump, and excretion of her body, and pathologize it.
• She commented on the 'actress' (GAH!) that had her 'stuff' removed due to her mother dying of 'that'.  She meant Angelina Jolie, the actor and human rights activist, and her mother's death from Ovarian cancer... and her being tested for the breast cancer gene, and getting a prophylactic bilateral mastectomy, hysterectomy and her ovaries, etc. removed.  I made the DIRE MISTAKE of commenting that I would be doing the testing soon and might have similar decisions to make (not commenting that she could have done this under her insurance at no cost and refused a few years ago).  She was appalled, and started her BS about breast implants, cancer, and etc.  I cut the discussion off brutally.
• She said she had something to tell me that was not pleasant, was disgusting, and I knew she was going to turn to discussing her poo.  Again, I will save you the unsavory particulars... but she asked if I was still having 'trouble' (referring to my partially paralyzed colon).  I very quickly and acidly told her I. DID. NOT. WANT. TO. TALK. ABOUT. IT.  She responded with a rebuke that she is just trying to be helpful, and plowed on with her 'discussion' that I would clog my toliet up like she did today, and then attempted to go into the details of the 'event' and its particulars that caused it, her phone calls to plumbers, the recommendation to buy an acid product (that we have at my shelter BTW) and how she used vinegar to unstop it.  I hung up on her.  

Not that this is to the level of anything near the hoarders who severely abused that child.  But- one thing is similar, and it is this amazing sense of entitlement that they do not have to follow anyone's set of boundaries.  They are above or beyond the law, society's conventions, and the boundaries of appropriateness.  It is always about them, what they want, what they experience, their priorities, and their screwed up narcissistic perceptions.  

What was a lovely evening filled with love, fun, food, music and laughter was eroded somewhat in just a few minutes on the phone.  I should have known better.  When will I learn?  And when is enough, enough?  

Dysfunction flourishes in silence.  Abuse grows in secret.  Keeping the secret... protecting the hoard.  After over 44 years, I am done being silent and keeping the status quo.  

Thanks for reading.

Memes folks have sent me in response to this blog. Thank you! Sharing:-)

Dropped off the edge of the earth for a bit, so much for Lisabeth's 'keep life and work in proper balance' resolution.  Epic fail...  the good news is the last grant is written and submitted for a bit!  Yay me!

Several friends are having issues that come with aging parents.  One friend has a father that has Alzheimer's in its earliest stages, and due to a fall he ended up with a serious brain bleed that required surgery, and prognosis is not good.  Another friend, who has a hoarding mother that most likely gave my hoarding mother mean/crazy lessons... Her father had a stroke and requires intensive nursing care.   The situations are similar with both of their fathers being beyond home care.  That is where all similarities end... and one woman's family has banded together to care for her medically vulnerable mother and father, and all choices are made out of love.  The other, the family is split.  In the other family, the hoarding mother has achieved her goal, and two children are supporting the hoarder in keeping the father in a substandard nursing facility where they only intermittently visit him, but when hoarding mother does, she intentionally and successfully antagonizes him.  They are blocking the two siblings from moving him to a specialized care facility near my friend where she could be with him daily...

Anyway, you get the picture.  I was struck by the dichotomy... and thought about how hellish it would be to have my mother as a caretaker or a medical power of attorney.  A fate worse than death....  In a hellish bit of serendipity my mother started rehashing my father's last days.  We are almost halfway between the anniversary of his passing 24 years ago and Memorial Day, so she has been EXCEPTIONALLY cheery.  She started talking about her plans for Dad if he would have been able to return home after he was placed on the heart transplant list.  As always, reinventing history is her speciality, since she has blanked out me visiting a local college and applying to transfer so I could be with Dad if that did happen.  No way was I leaving him with her.  

"So... I am thinking about getting a hospital bed for myself.  I think I will get it and put it in the living room and just get a recliner so I am ready for anything and it is already here.  I do not have anyone here and I DO NOT CARE.  You know, when things... when things happened with your father, when the end was happening, I was going to do that, so he would be in the front room and he could watch TV, see out, and if anyone came over since he had to have people running in and out of his mother's or the garage, they would not have to be anywhere in the house but the living room, and if he had to have nursing help .... [blah, blah, blah]..."

Seriously?  Before the clot that took his life at the end- which was the last 12 hours of his life- he was weak but he was able to move around, walk, etc.  He would not have been bedridden.  It was the clot that paralyzed one side, and if he had not thrown another clot there is a strong likelihood he would have recovered from that, to what degree we do not know....  He lived life fully, and he would have died a horrendous death many times over before he succumbed to be warehoused in the living room.

"[Weakly]... Oh..."

I absolutely got the chills- not figuratively, LITERALLY.  One, she is on her normal trajectory of narcissism and martyring herself.  I had such a hellish picture of the horror that my father would have experienced that it took my breath away.  For the first time I realized that potentially how things played out 24 years ago released my father from what would have happened.  I know what would have happened.  I watched her 'nurse' her mother.  The flesh can heal while the spirit dies.  She was emotionally abusive and the epitome of the abuse of power and control.  Two, I would have given almost ANYTHING to have my father in my life because he was able to have some quality of life... He would not have wanted to have laid bedridden anywhere.  I think the third thing, and maybe this is my selfishness, is it just hit me how narrowly I escaped the hoard, (as much as any COH/survivor escapes) and how different my life is now because I escaped.  At barely 19, if I would have returned home, I feel I would not have survived long term to escape again.  The simultaneous revelation was my mother's sickness is so complete, she would do anything necessary to pull me back in.  My life as an individual and my health does not matter, I only exist as an extension of her... 

This weekend is Memorial Day... and I took off so I have a 5 day weekend.  I have the time, the money, and the ability to go home.  I cannot.  I choose not to.  I will not.  I stay away for my sanity, for my health, and to live.  

And live I will.  My way, my terms, working hard to step past the shadow of the hoard.  And although my relationship with my hoarding mother causes me much pain and stress... I am succeeding.  She is not me, and I am not her.  

I hope to have more 'from the mouth of a hoarder' quotes soon.  She has said many, many things of late that warrant inclusion, but honestly, I am just so saddened by them that I am not finding them amusing in any way.  I am also becoming strangely numb to them.  I am sure my dark, sarcastic sense of humor will kick back in soon.  

I am flying south in 3 weeks to see some of my COH friends.  I am counting down the days, because I think we all need to spend some time with others who understand the 'shorthand' of COH speak.  

We are also discussing how to advance the understanding and knowledge of hoarding and the huge impact on the children and families.  

To be continued...

Dear Abby needs educated on hoarding ....

http://www.kansascity.com/2013/04/04/4159250/dear-abby-hoarder-driving-him.html

Greetings!

Here is an opportunity to provide 'Dear Abby' with updated information on hoarding, the DSM 5, and the impact on children.  

Who will join me?

Some salient points have been reinforced of late

To those that celebrate Easter, Happy Easter!  Today I spent the day recharging myself, spending time with the 2 most amazing cats (my furry family).  This weekend I took a large part of it off, and although I will have a large price to pay over the next month, I needed these three days ... to only do what I wanted, needed, had to do. 

I reconnected with some friends that I have sadly neglected due to my crazy work schedule the past few months... and I am working to once again achieve balance.  I am really working to move past the 'all or nothing' or perfectionist perspective that I was indoctrinated with by my hoarding mother.  I have a huge list of things that I have a deadline for at work.  And I will get them done.  I should have 'deep cleaned' my apartment (although it is company ready now!) and went to the grocery.  I did not.  Because this weekend, self care was the priority.  And reconnecting with those most important to me... my family of choice.

Now- bear with me, this may be a bit a long and twisty, but...  In the past few months work has been demanding.  Lots of lobbying, advocacy, new staff, and all grants are due for renewal... plus 2 events coming up and ... you get the picture.  I have worked crazy hours, worked every day, and let my life get out of balance.  Somehow I have drug myself to the gym 3 times a week, but it was a fight.  Happily, I am 92 pounds down, and 21 lbs from goal.  Only 8 from a calculated BMI of 25.  Through all of this, although I am an introvert and enjoy my own company, I felt isolated.  I was isolated.  By my own excess... (work).  And to that end, I thought about the isolation my hoarding mother imposes on herself.  About her inability to see things from another perspective, to be part of her own (or anyone else's) solution, to set achievable goals that are set in reality, and to accept responsibility/be accountable for her own life.  Not that I am perfect.  Obviously I am not. 

I spoke with some other COH's online this week, and have lurked in the online support group.  On top of that, speaking to my mother, highlights the true sickness, the narcissism, the addiction of hoarding.  To her and many, if not all, hoarders- their overarching coping mechanisms focus on the abuse of power and control.  Within that framework, several things are relatively consistent with most hoarders, if you can dig deep enough.  They are:

• Narcissistic and manipulative parenting
• Lack of empathy or compassion 
• Extreme rigidity
• Lack of boundaries and limits
• Refusal to look at data in a holistic way that would result in a reasonable conclusion

If you were so motivated to look back at the 40-something posts here on this blog (if you are a complete masochist), you would be able to group them into these categories.  Much of my posting has been on the horrendous things that come out of her mouth, and her refusal to see things from any other perspective than her own.  I see her constantly revising history and her rumination and negativity as stemming from the above. 

It appears to me that the life of a hoarder (especially one as close to the utterly dysfunctional/abusive end of the behavioral continuum as mine) is both full and empty at the same time.  It is empty of the things that most find rewarding... like reciprocal friendships, evolving and loving relationships with family, activities that bring joy to them and others... the list could be huge.  What the hoarder's life is chock full of, other than useless stuff, is bitterness, anger, and fear. 

That is simply so sad.  I heard a statistic from a respected hoarding researcher that less than 7% of those who receive therapeutic intervention for hoarding show any sign of substantive improvement.  And more frighteningly... there is a 100% failure rate on curing it.  (Now, I have an email into the person citing these stats so I can annotate/cite them correctly).  That tells me that to date, the current way of treatment is an utter failure.  This, in my mind, would be like working with the perpetrators of domestic violence and asking them gently about the times they used power and control, and asking them to maybe not use a baseball bat on their significant other, but to just punch them.  And the family?  Sorry!  If you are not willing to submit to the continued abuse, you are obviously part of the problem.  Is this a harsh analogy?  Yes.  Exaggerated for effect?  Yes.  Accurate nonetheless?  YES.

OH. MY. GOD. This might be what pushes her over...

So- this might be it.  Mom heard back from her MRI.  She has a torn tendon on her hip and is being referred to an orthopedic surgeon at the end of February.

She has been walking with a cane since July, has had two rounds of PT, and she blames the one physical therapist for the tear.  She has extreme osteoporosis and osteopenia.   I am not sure she yet understands what this means.

1. Likelihood of surgery
2. Necessity of going to a rehab since she lives alone and the house is unlivable
3. Needing to be able to navigate the house in a walker, or similar

She has a couple of goat paths through the hoard that are maybe 12 inches across.  THERE. IS. NO. WAY.  We won't get into the mold, the dust, and the crud.

I am not going home.  Whatever happens with this will be what has to happen.  She will have to figure out the cats, etc.  If she comes to the attention of Adult Protective Services, so be it.

The definition of insanity...

Is doing the same thing over and over again and expecting a different outcome.  Welcome to another episode of 'my phone calls with my hoarding mother'.

As you may know from experience with a hoarding relative, know from reading my blog, or know from talking to other COHs, our hoarders tend to repeat themselves.  They will tell the same stories over and over, with the same vernacular, the same details, even the same inflection.  It is like listening to a tape recorder of crazy!  Try to head a story off by saying something like; "Yeah I remember that.  I was there." Or- "You have told me that story before" and you get it anyway, but the long defensive version.  My favorite was when I tried to intervene in a horrendous story of a small child running into a fire after her dolly (the reaction, not the story- the story makes me want to puke) she actually started speaking faster to get it out before I hung up on her.

So- Mom and I have several subjects that I will not give her an audience for, such as:

• Her personal grooming of her public hair (or questions of mine!)
• Her discussion of her fungus infested toenails and skin eruptions (taking a bath more than once every 2 weeks or so might help a bit)
• Any discussion of her poop, pee, phlegm (that she pronounces 'flame' ), or any other liquid that comes from an orifice... or the orifices of her cats, her neighbors, folks 14 times removed that are not pooping, etc.
• Gun rights, politics, or something she heard on Fox News
• Violent or vigilante types of ideation and paranoia 
• When she is endlessly speculating and making assumptions about folks that she does not know well or at all- she is using it as a precursor to judge them
• When she is judging, bigoted, or just plain cruel
• When she takes indirect or direct swipes at me and attempts to guilt me or martyr herself

Now- the other thing we have been going around and around with is her discussions of certain things that she will ask for my knowledge, resources, etc. that are within my expertise/experience and then do nothing, or talk to a 'Wonderful Stranger' and do the opposite, then blame me when it often plays out as a I predicted.  I honestly consider it nothing but verbal masturbation.  The list of those topics consist of:

• Medical questions about her, the cats, about folks she knows.  My response is 'ask your doctor' or 'ask the neighbor' or 'ask your vet'.
• Endless questions about Internet service, the Dish Network (she pronounces it DEEESH) and what she needs for her laptop that has not been out of the box since purchased in Feb or March of 2006- I am not discussing this anymore after YEARS of this conversation at insane detail.
• Talking about churning the hoard.
• Anything about her car.
• Anything about home maintenance or repair.

What does that leave us?  Not much.  I know this seems heartless, but I have had these conversations in both categories not hundreds of times, not thousands of times, but hundreds of thousands of times- without exaggerating, the count could honestly be in the millions.  She does not have dementia, it is all intentional.   I am constantly redirecting, setting boundaries, or leaving the conversation.  Yesterday when driving home from a shopping trip I called her.  In 23 minutes we hit all the topics in both categories.  Nothing was positive.  Also, yesterday was my first true day off since 1/2/2013 and working 13, 15, 18 hour days.  I think the last pay cycle if I recorded all of when I actually worked, I would have had over 200 hours for that 14 day period.  Then commuting 30-45 minutes each way on top of it.  Not sleeping at all to speak of, working through the night, hardly eating.  I have lost 1/2lb to 1lb a day for the past several days.  It has been a particularly horrible week, and when she commented that I 'sounded funny' I attempted to say that it had been a hell of a week... but was cut off on the next thing that we are not talking about.  I decided to see if I could get a normal 'maternal' mother-to-adult-child response by continuing to try to tell her, she would cut it off each time.  The final piece of crazy?  

I run a nonprofit that intervenes directly with trauma and interpersonal violence.  I have worked in the field for over 24 years.  She asked a question, "So when someone calls and X is happening..." and proceeds to ask a rather basic question.  I answered her that it depends, and before I could draw a breath to give her the rest of the thought she exploded telling me the obvious and intimating that I, and my staff, are not serving these folks competently.  Now- I do not need validation from her.  I have NEVER had acknowledgement of my achievements, and I damn straight do not need from her now... or EVER.  I know that I am a subcontracted trainer for a number of statewide and national groups.  I know that I am sought to train at conferences, to work with troubled organizations, etc.  Now- I also know there are many folks more skilled than I, but also a lot that are not as experienced in the same way I am... yet.  I icily informed her it was NOT my first day on the job, and finished my sentence.  She still was peeved, and I again stated it was not my staff's first day on the job as well, and the common treatment modalities and interventions they would use.  With that I got a weak, "Oh".  When she attempted to start another volley... I ended the call.  

So apparently, [according to her daily jabs at me]  I am a failure as a daughter because I left home and will not give up my life, my health, my career to return home to the hoard and to be her slave.  I have allegedly never got over my father's death (um... who still has his boots in the hallway after 24 years?).  I am a failure because I am not looking to remarry and am happy single.  I am a horrible pet parent because I <gasp> leave my cats out in my apartment when I am not there and let them sleep with me at night.  I am a failure because I value social change and justice and also am dedicated to nonviolence.  I am a failure because I am a feminist.  I am a failure because I chose to do what makes me happy rather than what would make me a lot of money (and although I am not rich, I do alright).  Now- she is starting into uncharted territory for us, apparently her new tactic to get under my skin is how she is going to let me know of the failure I am to clients, and in my job.  

I will not JADE with her again.  [JADE is an acronym for Justify, Argue, Defend, Explain/make excuses] She is getting close to shoving me off of the edge.  The edge of my commitment to remain in contact with her.  I will not make a decision while I am this tired and worn down from work... (You know... the never make an important decision when you are mad, sad, tired or hungry thing).  But I will carefully re-evaluate this.  I will not allow anyone to upset my balance and invalidate what I have accomplished.  And no healthy parent would ever place an adult child in that position.  

Good night all.  Wish me luck at work, and with her.  May no one else ever have to deal with this.  Hoarding hurts.  No one wins.

Sharing a Link to a Hoarding Research Study

Here is a link to a study. http://hoardingstudy.com/ 

I just learned of it not too long ago, and I am not sure if it is current at the moment, but I am definitely advocating for those who are COHs to participate so we can achieve several things: 

1. That the impact on hoarding on families and children... both adult children and children under the age of consent is acknowledged by professional communities and professionals such as therapists, psychiatrists, social workers, counselors, psychologists, et al.


2. That the stuff is but a symptom of the underlying issue(s).  For many hoarders, their illness includes elements of addiction, the abuse of power and control, narcissism/other personality disorders, abuse- emotional, mental and sometimes... physical and sexual.  (It appears that the DSM 5 and the work of Dr. Suzanne Chabaud and her team are making some headway here presently!)


3. To better learn and identify short-term and long-term physical and psychological impact on COHs.


4. To develop new treatment and intervention modalities that recognize the current treatments are not effective and often victimize the children yet another time.


5. To assist communities in identifying and intervening in hoarding situations, especially when underage children are present.

Now... do I expect this to happen with participating in one lone survey?  NO.  But, for those of us who are far enough in our journey, who are healthy enough and supported enough by our friends and families of choice, to do this safely... being active is a way to help.

Will you join me?