For Once Hospital Discharge is Full of Hope

I got word today that my mother will be discharged from the hospital tomorrow.  Now usually at this point all the family members are scrambling, I'm on the phone with the hospital social worker begging for more days.  The phone lines are all busy and I have two people on the phone at a time.  This time mom appears to be better than I've seen her in years.  I think she's ready to be out of the hospital.  Plus this time (unlike all the other times) she's going back to her assisted living facility, so there is someone there to keep track of her meds and make sure she's been bathed.

But I think what makes this time different is that we saw actual improvement in her.  We didn't feel like the doctor was just doing everything she could to quickly stabilize her and send her on her way because another more needy person was waiting for the bed.  I hope my mother will continue to improve.  The last time she was in the hospital we were told to just expect her confused, depressed, delusional brain was her new baseline.  Like that was supposed to give me some warm fuzzy feeling about her care.

Instead of receiving hospital care that feels formulaic and impersonal, as if the doctor were treating a simple infection or a broken bone, she has received personalized care.  The doctor this time, it seems, spent time figuring things out and really asking specific questions about how my mother has been over her kids' lifetimes.  As a result my mother has received a new diagnosis.  One that explains all the ups and downs of my childhood and the reason why she does well for only a few months at a time until the depression takes hold and fuels the psychosis and she ends up back in the hospital every few months.

Her new diagnosis is Schizoaffective Disorder. For my mother it is basically schizophrenia plus bipolar disorder.  It explains why she spent all of the 1980's and most of the 1990s in bed, book ended with occasional bursts of compulsive shopping, cleaning and calling the 700 Club. This change in diagnosis means changes in medications and hopefully a better "baseline" from which to draw.  The unfortunate thing about it is that it can look like dementia.  So, the question becomes does she have dementia or was it just Schizoaffective Disorder.  It complicates things since we have a long family history of the disease.

I am thankful for this more clarified diagnosis and I really hope it means things will improve, but this has brought out painful memories for me.  I haven't been able to help myself in brooding in the childhood I experienced.  If only someone could have helped her then would my siblings and I experienced a childhood filled with sports teams, dance classes and wonderful family memories?  Was there a chance for something other than a childhood full of darkness and anxiety?  It's hard to let go of the past when it affects the present so much.

I saw mom a few days ago and I can't tell you how much she's improved.  Of course there are still delusions.  She told me and two of my siblings that the doctor did a CT scan and found she had multiple strokes and suffered permanent brain damage.  The doctor never had her undergo a CT.  She only tells these delusions to family.  Makes it that much more difficult to find people to help.

I'm hopeful for this next stage of the journey, but we've been here before and nothing improves.  They say the definition of crazy is doing the same thing over and over again and expecting different results.  And we've been at this point many times only to be set up to fail all over again.  But without hope you can do nothing but give up, so I'll hold on to every scrap of it I can find.  What choice do I have?

Things You Should Never Say...

Since things are calming down I figured it was time for a post on the lighter side of things.  I use comedy a bit to cope with things.  Not that this is a funny situation, but if you don't laugh schizophrenia wins.  So here is a list of things I've heard this week that you really should never hear.  And some things that should never be said in a psyche ward.

"The doctors will slice and dice you and you have to trust they'll do it right." Overheard sermon from a Pastor who clearly needs a lesson in tact.

"You can't keep your chicken in there!  I'll keep it safe right here with me!"

"I'm not responsible for someone from my agency telling you wrong information."

"Are those cops here for me." This one should just never be answered.

"You want the kind of mother who will brush her hair and brush her teeth and I'm just never gonna be that kind of mother.  You have to learn to live with that!"

"What kind of meat do you think that is?  It looks like turkey, but smells like pork.  Why don't you try it?"

"My nipple fell off once.  I stuck it back on." I blame my job for walking into that one.

"Remember, if you're going to have sex in a park take your name badge off first."

"Is that Kyle?" "No, it's my mother." "Are you sure?" "Quite."

"I wake up every morning and want to kill myself.  That doesn't mean there's a problem, it just means I'm a little bit sad."

"I'll execute this one while you execute that one."  This was a police officer referring to filling out two sets of paperwork.

There you have it.  Anything you've heard recently that just should never be said?

November 2011 Hospitalization Update

Yesterday I wrote a post about all the things that were happening during this attempt to get my mother the inpatient care she needs.  Today thankfully things started moving and she was placed in the Gero Psyche ward at Norfolk General.  It's been a long day, but I was so glad to leave her in the capable hands of this hospital.

From start to finish it took 56 hours to have my mother admitted for treatment.  And I thought the previous times were bad at 24 hours.

I am still very irritated about how the whole thing played out.  I never ever thought I would say this in a million years, but I can't believe how much better the City of Chesapeake is at handling these things that the City of Norfolk.  As the Norfolk police officer said "You're not in Kansas anymore."  Chesapeake seems efficient and streamlined.  Things may be slower than you'd like, but everyone seems to know what's going on.  Norfolk was a what I would call a hot mess.  No one seemed to know what was really going on or how it should go.

Exhausted from Sunday and Monday's events I fell asleep last night and slept for 13 hours.  I headed up to the hospital to spend some time with my mom so she knew we weren't abandoning her.  She was receiving psychiatric care in the ER so at least she wasn't floating.  But she was pretty angry the doctor put her on a medication she didn't like, Zyprexa.  It is the only one that has ever worked for her.  The ones she has been on are really hard on the elderly brain so it was either give her Zyprexa and have her be mad or stick with drugs that slowly make it harder and harder for her to function.

I was informed about noon that she was being placed in the Gero Psyche ward.  It was after 8pm before she finally got there.  In the end she needed to be on Temporary Detainment Order and the Norfolk Police Department had to escort her up the elevator to the ward she is staying in.  I have no idea why they have to do it that way. It wasn't that way in Chesapeake, but whatever.

The sad thing is that because of all the uproar with the Norfolk Community Services Board (they paid an employee for years who didn't show up for work because they never bothered to officially fire her) the people who know how to do their jobs have left.  Funding has been pulled so that other organizations are not available to help.  I've been told that soon the people we worked with this week will all lose their jobs due to budget cuts.  Although they were of little help this time and caused a lot of confusion and aggravation I don't believe cutting more funds and getting rid of more people are going to improve an already impossible situation.

People need to wake up and realize that we can't keep going full speed into a brick wall.  Something has to give.  We either need to raise taxes or just never get sick.  I don't think the latter is a possibility.  There's no money and people need help.

I watched a homeless man in the hospital desperate to keep his leftover chicken safe so that when he was released he'd have something to eat.  This is America!  What does that say about us if we let things like that happen?  The sad part is he will get some help, maybe lots of help, but soon he'll be living on a park bench again not knowing where his next meal will come from.

When I walked my mom to her room the nurse gave me all the instructions for the ward.  Then she asked if our family had a "safe word" we like to use.  Yes my mind went there.  The first word that popped into my head was a type of animal.  My brother said I clearly wasn't up on my secret agent code words.  I've been ordered to brush up on my viewing of "Top Secret."  I'll have to make time for that tomorrow.

Who Really Is the One Who Is Crazy?

My mother has been decompensating over the past two months.  Her mental state has been slowly declining and her psychiatrist has said he cannot do anything for her on an outpatient basis.  She needs to be hospitalized. So at her appointment we came up with a plan on what to do if her delusions did not improve.  It  included the old standby of calling Emergency Services of whichever city she is physically in.

Those of you who have been through this process you know that having someone hospitalized for mental health reasons is never an easy process.  If things aren't emergent I look at my schedule and figure out a time when I have two full days to devote to just the process of getting her admitted to a hospital.

It's supposed to really go like this.

Contact Emergency Services and explain the situation
Emergency Services comes out and evaluates the patient
Emergency Services decides patient needs to be hospitalized and calls to find a hospital bed that's available
Patient is usually held in an emergency room or magistrate's office until the bed is available
When a bed becomes available the patient is transported by the Sheriff's office to the facility to receive treatment.

But it never works that way.  Usually my mother ends up needing to be medically cleared before the mental state can be evaluated.  Each time it takes about 24 hours or more to complete this process.  It's aggravating and time wasting and down right painful to go through.  It usually ends with watching my mother be shackled and put in the back of a police car.  Never something you want to see.

This time was more painful than usual.  Well, I shouldn't say "was" because it's still ongoing.  And we passed the 24 hour mark 7 hours ago.

On Saturday my mother was acting very strange when I visited her so I decided it was time to put her in the hospital.  She was saying her doctor and the people who work at the ALS she lives at were trying to kill her.  She was whispering to herself and acted clearly confused at what was going on.  She wasn't giving the staff any trouble, but I've seen these signs before and I know it will only get worse.  I had my kids with me so I couldn't do anything right then.  I decided to wait till the next day to start the process.  It was also so I could get a good night's sleep before the grueling ordeal begins.

I called on Sunday at noon and was told by the very unsupportive man at the Norfolk CSB that they would come to evaluate my mother, but to not bet they would believe she needs hospitalization.  I was told I needed to hurry to her ALS because I'd better be there when they got there.  There was no promise of a time frame.  I hurried.  When I told my mother someone would be coming to evaluate her she gave me this horrible look and gestured to hit me.  At 4pm I still had not heard from the NCSB so I called to see what was going on.  The woman answering told me that she'd told me several times already that my mother's doctor wouldn't let her go to the hospital.  I told her I was sure she was confused as to who I was (I hadn't even given her my mother's name) and it took a bit to convince her that yes, she had confused my mother with another patient.  I was informed they were not coming because only the facility could call and invite her in.  Of course since the facility didn't witness her behavior if they did call the concern would be dismissed.  I informed her that she embodied everything that was wrong with the mental health system in Virginia.  It clearly sounded like it wasn't the first time she'd heard that.

So, with no other real option, I drove her to the emergency room at Norfolk General.   I was met with a wonderful nursing staff, but a doctor who informed me that for geriatric psyche patients they can only be admitted to a facility 8 to 5 Monday through Friday.  This was Sunday.  I was told I should take her home.  To do what, I have no idea.  But I've been around the block a few times and I know that if you go home and come back the next day you only increase the cost and lose your place in line.  So I refused.  The Norfolk CSB informed me I should not have come and that I should have done it their way (refusing to evaluate her at all is apparently "their way.")  I was informed that the CSB worker at the hospital was present during my "many phone calls" and he knows I was told to talk with her doctor first.  I must be falling asleep and calling these people because I remember only speaking with them on two occasions and I don't remember them telling me to call her doctor ever being part of the conversation.  He said they had a big file on her and then later said they seemed to have no paperwork on her.

We were informed she would be admitted if there was a bed in the morning and we could avoid the temporary detainment order (TDO) which would save a step.  Then in the morning we were informed that she would have to be reevaluated and placed under TDO.  Seems no one at the Norfolk CSB has any clue.  NO wonder I've been told to avoid them at all costs.

Since she has insurance and we have guardianship I asked the doctors if we could just avoid even dealing with the CSB, but it isn't possible.  It's the way things are run.  And because of budget cuts there are less and less psychiatric beds available and longer wait times in the Emergency Room waiting for one to come up.

So my mother is waiting in the emergency room waiting for a bed.  It is 730pm on Monday and this whole ordeal started Sunday at noon.  There is no end in sight and the nurse informed me that it would at least be a couple of days.  Thankfully the hospital did bring a psychiatrist to see her and changed her meds so it's not like she's floating.  But, she also isn't receiving the care she would receive in a psychiatric ward.

There was a man with Alzheimer's Disease waiting in the ER there as well.  His wife said they'd been there since Friday evening.  At 4pm Monday the hospital was promising him a bed, but it hadn't happened by the time I left.

With the aging population we have more of this to look forward to.  God help us all.