Thursday, April 26, 2012

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.

Monday, April 23, 2012

Do You Hear That Cracking Sound...

I think I'm about at my wits end with all this work.  It just seems like the more I get done the more I have left to do.  I wish I had known how much work this all would be when I filed the petition.  I probably would have done it anyway since that's what you do for family.  Still it would have nice to be a bit prepared for all of this.

To back track for you all who don't know me in real life (or Facebook life) my mother was able to be placed on the Gero Psyche ward on Friday afternoon.  It was such a huge relief that she wasn't going to spend the weekend in the ER waiting for placement on Monday.  I spent Friday evening sleeping off the horrible allergy headache I developed and then went to mom's house to paint for 8 hours, alone.  I instructed my husband, who had a rare day off, to take the kids to as many fun things as possible.  They went go-karting, bowling and had pizza for dinner.  I'm glad they were able to get so many fun things done in one day, but a huge part of me really wanted to do it all with them.  It seems really unfair that my family is the one who has to make the sacrifices to get my mom's work done.  But it has to be done.  The sooner the house is on the market the sooner my kids get their mom back.  

I spent today visiting briefly with my mom, taking paperwork to her social worker and taking 3 trips back and forth between the court and the bank in an attempt to get the quitclaim deed signed, notarized and submitted.  I was not successful in my attempts. Tomorrow I have to be at the hospital at 8am for mom's Temporary Detainment Order Hearing (TDO).  The doctor expects her to stay till Friday.  However the social worker said that was because my mother wasn't hearing any voices.  I spent about 15 minutes talking with my mom (okay talking TO my mom) and she mentioned her friend "Will" admitted to her he was trying to hurt her and he wasn't "of God" and practiced witchcraft.  If you remember from previous posts he is her new imaginary friend who advises her on living choices.  She's clearly hearing voices.  And for a good portion of our visit she blankly stared.  I had to shake her arm a few times before she resumed talking.  

There's some things that you just wish you could unsee.  

So tomorrow I will wait for the hearing.  I'll be skipping my doctor's appointment that I desperately need for my worsening asthma so I can be there for her.  I think I've crossed the line between trying to help and sending myself to an early grave.  

Wednesday, April 18, 2012

Now if Only I Could Predict the Lotto...

Remember my post last month?  The one where I said if things don't change mom will be back in the hospital in two months?  I wrote that blog post on March 21st.  Today is April 18th.  I guess I was off by a month.  I've been frantically trying to get her house ready for sale so I could devote the time she needed from me for a hospital stay, since I predicted it happening sometime in May.  So, this will probably slow things down a bit, but here's hoping other family members pick up the slack enough that I won't fall too far behind.

My mom's delusions have become a bit more vivid recently.  She has a new imaginary friend, Will, that I introduced you to last time.  She's been shaking less, but I was really thinking things were staying the same.  She started having a Psyche Nurse visit her a few weeks ago.  I was hoping this would be what would help keep her out of the hospital.  Clearly that was false hope.

Today I got a call from the Psyche Nurse who had been called in to evaluate her today by the facility (I'm not sure why they called her since they should have called me first, but whatever.  It's not like I'm her Guardian.  Oh wait.  I am.).  When the nurse was on the phone she told me about mom's most recent delusion and it's become a bit more....elaborate.  Now Will is Satan and mom's being attacked by him.  The poor nurse sounded very shaken up by the whole experience.  I hope she doesn't end up with PTSD over the situation.  I mentioned that I was expecting a hospitalization soon if things didn't improve and she indicated to me that we are at that point.  The doctor could do med changes, but since she doesn't have anyone that can watch her closely (her ALS does not provide this service) then that could do more harm than good.

So I contacted her doctor who agreed hospitalization was the best choice at the moment.  Tomorrow morning I'll take her back to Norfolk General and pray there's a Gero Psyche bed available.  Since there are only 6 in the entire Hampton Roads Area (Wikipedia lists the area as having 1.6 million people so only 6 people over the age of 50 can have any kind of mental issue at any given time.  Good luck with that HR), there isn't much chance of a bed being open.   I'm worried we'll be in the ER till Monday.

So if you are a praying person please pray for health, skill and a slow day in the ER.   I'll take chants, vibes, quirky memes or anything else that could possibly help.

Oh and if anyone knows any politician at all please smack him or her over the head and tell them to get to work!  Or send me his/her personal cell number.  I'll put my mom on the phone.