Newsflash!

I have something to tell the world that I think will both shock and awe.  I think you will find that I've figured out the impossible.

Someone who is actively having delusions and is hearing voices or seeing people who aren't real don't know that those voices or people aren't real!

I've said it!  The cat's out of the bag!  You can bask in my greatness now.

I can't tell you how many people over the past several weeks have asked my mother if she is hearing voices or seeing people who aren't real.  When she says no they will often proclaim to me she isn't hearing voices or seeing people who aren't real and she is perfectly fine.  Of course I ask her things like "did you talk to Will today?" and she readily admits she's talking with him regularly (see this post introducing Will if you don't know who he is).  So they bury her illness in semantics.  A few of these people are doctors, nurses and social workers working in the mental health care field and really should know better.  I'm guessing they just don't want to see it.  This is why it is so important for family members to be there as much as they can for their loved one.  I know it's not possible for every family, but if no one is there to advocate people fail to get the care they desperately need because of sentence structure and word choice (good communication saves lives, people!).

The sad part is that those technicalities are there because there are so few funds available those working in the mental health field have to weed out people who are not in an absolute crisis "I'm going to kill myself or others" state. Those who need inpatient care, but aren't seconds away from ending someone's life fall by the wayside.  And they get sicker and sicker until they finally end up in that state.  Then they can get help, but often it's too late.  And you waste a lot of resources that wouldn't have been needed had the person received help much earlier.

It's all about trying to cut down on inpatient services in favor of community based services without actually making sure those community based services are adequate for the population it serves. Not all treatment can happen on an outpatient basis and our ERs are quickly becoming a slow moving weigh station for many people who need help with substance abuse and mental health care.  If you really think about it, who do you want to receive the best care: the guy with a clogged artery or the guy with schizophrenia and a gun rack?  In reality the guy with the clogged artery will receive the care while the schizophrenic will be sent home and we all know how that turns out.

Today my mother had an appointment with a Neurologist to find some answers about her constant tremors.  Bottom line:  they are caused by the psyche medication she's been on in the past (and possibly present) and it is permanent.  She has Medication Induced Parkinsonism.  The doctor told me a person could take these drugs for a short time and then nothing for 30 years and still develop this.  And when I think of all those times I took my mom to the doctor for her Haldol shot or filled her Trilafon script or filled her medication dispensers I hate myself.  I know on an intellectual level it isn't my fault.  I was trying to help and I wasn't the one making the medical decisions.  But still...

Last week my mom visited with her psychiatrist and was telling him all about how her psyche nurse was discussing my care with her and I didn't like it so I put my mom in the hospital.  The doctor asked her if I was his patient and she said I was.  The sad part is, if all that were true I would be the last to know.

The Dividing Line

Tomorrow is the expected discharge day for my mom's most recent hospitalization.  This is the same team that worked with her in November and I felt so good about her being treated there.  This time the future looks grim.

We've had to decide which delusions we laugh off and which ones we race her to the ER for. There isn't talk anymore of "controlling the delusions."  That battle is already lost.  Schizoaffective Disorder simply refuses to play by the rules.

My mother has been in Gero Psyche for a week now.  I saw her on Monday where she appeared groggy and admitted to hearing voices.  On Tuesday I visited her and she seemed a bit more animated, but still wouldn't get out of bed.  On Wednesday was her TDO hearing that was rescheduled twice.  I didn't attend.  This is the first hearing she's had where there wasn't at least one of her children at the hearing.  I've heard it didn't go well and what was expected to be a voluntary commitment ended up with a scene, and involuntary commitment and an immediate med change.  I've yet to find out what happened and part of me really doesn't want to know.

Back in November I allowed myself to hope that she could be normal again.  When she left the hospital back then part of me was angry for starting to clear out her house.  I had hope she would one day be able to live on her own again.  I guess maybe that's what's been keeping me going through all this.  That one day I'd be able to "fix" her if I just tried a little harder. If I prayed harder, if I worked a little more, if I found the right doctor, if I just made the right choice I could change things. Obviously this is a very foolish notion that I need to let go of.  She is never going to be "fixed."  I'll never have my mom.  I've always felt she has been lurking under there my whole life, screaming to be let out.  Now I have to wonder if she ever existed.

The discussion this week has been about whether we as a family should sign a "do not resuscitate (DNR)" or a "do not intubate (DNI)" order for her.  I didn't think that's a decision I would be thinking of so soon.  I had to call all my siblings and ask their opinions, taking a few moments to grieve in between calls and begging in my head for someone else to make this decision.  The results were two for, two against and one on the fence for the DNR.  Unanimous for a DNI.  One of my siblings, in objecting to the DNR, felt that I might feel guilty if I sign the DNR and she has a heart attack.  As if the guilt of ending life support would somehow be easier than getting a call that her heart stopped.  I'll have crushing guilt either way.  This isn't a choice.  It's a nightmare.

I remember as a kid I always felt I would never euthanize a pet because it was cruel.  Then we did everything we could do to save our beloved cat Piglet.  In the end I could see the pain in his eyes and I saw that I didn't help him by having the vet take heroic measures.  I made him miserable.  We had several more cats who died after long and painful illnesses.  And I figured out that euthanasia is not cruel.  The heroic measures were what was cruel.  Not that I would euthanize my mom - even if I could.  It's just that she's suffering so much.  I can't imagine wanting to prolong that by artificial means, even if those artificial means are relatively minor and basic in most cases.

Today I spoke with my mom's mom.  There was one thing that echoed long after we ended the call.  She said she felt she should have done more for my mother when my mom was younger.  Maybe she could have said something or gotten help for her or convinced my dad she needed help.  This is something I've been wrestling with over the years.  I have been angry that no one did anything to help her.  I felt this horror show we are living in could have been avoided if someone had just done "something" decades ago.  But I've learned a few things.  Sometimes we do more harm when we act than when we don't.

All this was set in motion a long time ago and no matter how many people push against it,  it can't be slowed or stopped.  It's in a constant, steady motion forward.  It's only a matter of time.

Nice to Meet You, Will

I'd like to introduce my mother's new imaginary friend, Will.  Will is my mother's trusted adviser on clothing choices, food intake and gestures.  Now if I can convince him to share Guardian duties I can get a day off.  

So it's been a rough day.  It started with picking my mom up to take her to her psychiatrist.  She spent the car ride there whispering to herself, so already not good.  Upon getting there the doctor said he had looked over the records from VB Psyche, but they couldn't find her chart for his office.  They found a few minutes later, but that doesn't give me a warm fuzzy feeling.  I informed the doctor of her whispering and she proceeded to tell him that she had a "Echanon" (no definition found on dictionary.com so I'll have to take her word for it) in her mouth that allowed her to speak to her friend and a something in her ear that allowed him to hear him.  Then she spoke of yarn like things coming from the floor and trying to bury her.  The yarn-like substance goes away when the lights are turned on.  

So the doctor ordered a pysche nurse to keep tabs on her and left her medication levels the same (they were changed 3 weeks ago so I'm thinking it's a prudent call).  However, he informed me he was dropped by the company that services my mother's Medicare supplemental insurance plan.  I think it probably had to do with a censure he received about keeping poor records for pain patients (where have I heard poor record keeping before?). I wasn't really fond of him, but that leaves us with the only other Gero Psyche doctor I could find in the area.  He treated mom at Chesapeake General when she in the Gero Psyche ward 18 months ago.  It wasn't a good experience.  

Hello Governor!  Whenever you want to make things easier for us peons let us know!

Count down to hospitalization continues...