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.

Life Doesn't Stop So You Can Catch Your Breath

It has been an exceedingly rough week for me.  I have the pressures of everything with my mom, but this week was a reminder that my kids need me too.

My daughter has been struggling with her teacher this year and it became obvious very quickly there was no way she could stay in this teacher's classroom.  I felt I was unable to communicate with this teacher in any way.  It left me feeling like I should return my diploma for my communications degree.  My daughter was so stressed her behavior became erratic and she refused to do just about anything asked of her.  Finally she was moved into another classroom today and so far seems to be happy and relaxed again.

My son thankfully, is doing great in the 4th grade and he has a teacher who really seems to get him (she loves that he loves to give you the play by play of his favorite show).  After such a rough year last year for him this much needed for all of us, especially him.

I was thankful I had the time this week to help my children.  I feel like with my mother's illness they often get only small strips of me, when they really deserve whole chunks.

So today, after making sure my daughter was comfortable in her classroom I had to turn my attention back to my mother.  She had a dentist appointment today to restore her tooth and prep it for the temporary crown.  You may remember she had a root canal last week.  She did great for both appointments, but this morning she was acting strange.  She was telling me about how there were motors in the beds that flip you out in the middle of the night and that a guy who lives upstairs (still an all female facility) died because he became trapped in the bed.  And she went on and on about how her psychiatrist was having the med techs overdose her so she would die and that the housekeeper was saying her room was filthy and if my mother didn't clean it up she would be evicted and then the housekeeper could have her room.  Her room was pretty much immaculate when I was there.  Okay I think maybe the comb had a strand of hair stuck in it.  And she had an incident a week ago where she fell out of bed and they weren't really sure what happened.  I found the med tech today who helped mom and she said she fell in between the wall and the bed and got stuck, but the bed is now pushed against the wall and that should solve the problem.

So in true tag team style I texted my sister while I was in the waiting room during mom's time at the dentist to please call the doctor and I described the delusions to her.  Her next appointment wasn't for two weeks so it couldn't wait that long.  She called and doctor decided to increase the dose and sent a fax to the assisted living.  Of course he didn't sign it or make it clear so the facility refused to honor it and we ended in a circle of faxes and voice mails again.  Things didn't happen so her dose won't be increased until Monday at the earliest.  Are you as annoyed as I am right now?

So I decided to clean up my mom's nails while I was there and had time and she couldn't stop talking about how she was going to die if her meds were increased and that the bed was going to crush her.  I assured her the bed would not hurt her, but she got angrier and angrier.  She said I was going to be very sorry when she died and then she said "I hope they come and butcher you."  Now my mind went to assuming "butcher" was a metaphor for taking me to court for elder abuse, throwing me in jail or something so I simply said, "well, yes if I screw up the court will hold me accountable and I could end up in jail."  Clearly I misinterpreted her because she then said, "no you won't.  You'll be dead and in little pieces."  She has said some pretty awful things to me, but I think this one won the Oscar.

So I got out of there, went to the school to finish my volunteer work, got stuck in a rain storm on the way home, came home to a cat vomiting all over the place and put on a brave face for my daughter who needed nothing but joy today.  We got errands done and I bought her the toy she's been eyeing for having such a good day at school.  My son got a CD he's been wanting.  We got some new books and traded in some old toys for some new clothes.  Now the littles are sleeping peacefully.

I've said before that I view crying as a luxury you can only afford when you have time.  I think tonight I'll have to make time.