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.

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.  

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.

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...

Oh, Thank You But I Don't Need a Donut, Medicare.

So, my mom hit the infamous Medicare donut hole this month.  Whose idea is this anyway?  If I find out I'll send her to live with him/her when her meds run out.  Although her meds won't run out.  I'll just have to do some creative negotiating of payments with the pharmacy.

I'm getting pretty good at payment plans.  I avoid them as much as I can, but now I have to use them.  Mom has payment plans with two hospitals, a dentist, a contractor and a credit card company.  That's a lot to keep track of (plus my own bills to figure out how to pay.  I often forget to pay mine entirely).  But a relative was nice enough to loan her enough to pay off two of the balances so that eases up a bit of brain space for me.

Next month is go time for mom's house.  The house will be on the market by the end of April ready or not.  I have given the final notice to family, who are using the house as their personal storage facility, that their things will be thrown away if not removed in the next week.  I'm done with the stress of it.  I plan on scrubbing the house down myself next week and start painting.  Now the kid with the severe asthma really shouldn't be the one painting, but c'est la vie.  So I'll schedule my week in bed for May and push through as best I can.

The med tech at my mother's ALS mentioned to me the other day that she heard my mom talking to herself.  An immediately count-down calendar started ticking in my head.  That day I walked up to mom's room and heard her mumbling to herself.  Today at her primary care doctor visit she told him she was seeing people.  She said she knew they weren't real so she refused to speak to them.  Then the whole drive back to her ALS she mumbled quietly to herself (she called it "speaking in tongues" when I was a kid.  I would call it "speaking without a tongue" for a more poetic and accurate description).  She was enrolled in an Observation and Assessment program through Medicare to hopefully keep her out of the hospital this time, but I'm not optimistic.

She's had severe shaking the past two months (she's having trouble eating and is rapidly losing weight because of it) and her primary care physician isn't sure if she has developed Parkinson's Disease (just what she needs) or if it's the medication she was on until November last year.  He said if it's the meds it may go away or be permanent.  There has got to be a way to catch a break here at some point.  My mother will be seeing a neurologist to figure out what's going on there.  Her new psychiatrist (who I'm really not fond of already) was adjusting her Zyprexa lower to see if it was causing the shaking.  Lowering the dose only seemed to make it worse.  And now she's complaining of panic attacks and trouble breathing.  She sees the psychiatrist next week so we'll see what he says (and if he remembers she's his patient this time).

So that little calendar in my head is ticking away.  I'm sure if a miracle doesn't happen she'll be back in the hospital in the next two months.  Maybe Mother's Day?  Maybe that can be my vacation? (See horrible daughter explanation in previous post).

A Good Daughter?

I do a lot for my mom.  Probably more than I should.  I seem to be lacking the all important "self preservation" gene.  But I guess that's me.

I often hear about what a good daughter I am.  I know that's high praise.  I may seem "good" on the outside, but there's a raging fight inside me.  The part that wants to do everything I can to make things better is often battling the part that wants it to be over.

A few days ago I went to visit my mother.  I was nearby and she'd been complaining of trouble breathing over the weekend.  The facility and my sister were sure it was anxiety, but I figured I might as well make sure.  She was a shaking mess when I arrived.  When the Med Tech took her blood pressure the diastolic number was normal, but the systolic was almost 130!  And her heart rate was 125!  I argued with my mom about taking her to a doctor to get checked out and she was refusing. Thankfully the cuff was one of those automatic kinds and was reading incorrectly.  So after a manual cuff was brought in her blood pressure was measuring normal and her heart rate seemed normal (she was flinching too much to get an accurate count).  The psychiatrist on call decided her Zyprexa was lowered a bit too much on her last visit and he increased the dose to what it was a month ago.  She seemed better when I saw her the next day and the shaking was greatly reduced.

But through all that I felt incredible guilt because of the thoughts running through my head.  A huge section of my brain was hopeful that maybe this would be the end.  Maybe her suffering would be over and I'd finally have time for my kids.  I wouldn't have to deal with anymore ALS procedures or arguing with doctors over the right care or the right paperwork.  No more reports to APS or dealing with audits from the lawyer.  No more begging family to remove their things from her home and getting very little help in preparing it for sale.  If that house is just my inheritance I'd give it away.

Below is the picture of the "Tree of Life" my mother painted on the wall in the formal livingroom in her house.  She initially drew it with pastels.  When it faded she repainted it in ink.  Part of me hates to paint this over because it's part of my childhood and one of the few times I remember her being truly creative.



Most of my childhood memories of her are quite painful.  Painting this over feels a bit like erasing all the good that existed.

Moving On...

Today I got the final call from my mother's case manager at the Chesapeake CSB.  She's been a constant in our lives for the past year and a half or so.  It's a bit bitter sweet.  I will miss having that connection, but am a bit glad to be out of the excessive red tape fest that is any agency you deal with.  They've been wonderful to deal with, but the annoying rules and funding cut offs are more stressful than they are help.  It's hard when you see people trying to help, but are prevented by the swipe of one little pen on a state budget.

I'm hoping I'll be able to change that.  Whenever I can fit "explaining to politicians how they are screwing us up" into my schedule I suggest everyone brace themselves.  I'm sure it will be the scream heard round the world.

We have to move on since she has insurance now and she is seeing a doctor board certified in Gero Psyche.  I'm sad, but happy that my mother is doing so much better.  I'm hoping all the hospitalizations are behind us and the conversations are more lucid than not.  We will miss Dr Q, Tonya and Susan.  Without them I'm sure we wouldn't have survived as long as we did through this process.

I did have one interesting email today.  I wrote an email to Gov McDonnell back in December or January I think (these months are just blending together for me).  I think it ACTUALLY got read.  And they sent me a letter that looked like it took more than 2 minutes to write, unlike the "fill in the constituent's issue" form letter I got from Sen Warner.  Tell me what you think of it...

Governor McDonnell has asked me to respond to your email describing the delay challenges your family faced in finding a Gero-Psych inpatient bed for your 65 year-old mother with a diagnosis of Schizoaffective Disorder.

Governor McDonnell and I appreciate your concern about having adequate inpatient mental health care services as the proportion of older adults’ population increases.  Thank you for providing the details of your concern with the assistance you mother received in your local community.  I encourage you to continue to communicate with your local Community Services Board for support.  I understand obtaining guardianship was a positive step forward for your mother.

I asked a representative of the Virginia Department of Behavioral Health and Development Services (DBHDS) to contact the Southside Geropsychiatic Services (SGS) sponsored by the Community Services Boards servicing Chesapeake, Norfolk, Portsmouth, Virginia Beach and Western Tidewater.  They provide free consultations to family or professional caregivers concerning behaviors which might put senior adults at risk of needing psychiatric hospitalization.  SGS can visit the home or facility at no charge and offer suggestion which can help to improve the situation and avoid unnecessary psychiatric hospitalization.  For further information on SGS, you can contact Kathy O’Connor.   DBHDS also recommended that you contact Marsha Obremski at The Pavilion at Williamsburg Place on their current planning for inpatient mental health services for older adult admissions.

Thank you for writing and for bringing your family’s concerns to our attention.  I wish you and your mother every success in obtaining mental health treatment and care that is responsive to her needs.

William A. Hazel, Jr., M.D.

Secretary of Health and Human Resources

1111 East Broad Street

Richmond, Virginia  23219

Now I'm not completely sure Mr Hazel understood the issue of the need for more inpatient beds and more resources for geriatric patients who suffer from mental illness.  But at least he cared enough to write me back and include some details from my email.  I wrote this after my mother spent 3 days in an ER waiting for one of only 6 Gero Psyche beds to open up (it was one of my more angry, less eloquent emails).  Maybe these people he refers to will be able to provide me with some help or guidance.  Maybe they'll have all the answers I've been searching for over the past 18 months or so.  Did I find the Holy Grail of Mental Health?  Hmmm, probably not, but getting someone/anyone to listen is a step towards making a difference.  And I will change things because that's what I do.  

The one thing I think everyone on this Earth needs to understand that change doesn't happen because you want it to happen.  Change happens because you get up and do something.  It isn't about supporting a candidate, voting (although incredibly important and your civic duty) or voicing your opinions in your social circles.  Change happens because there was a person who took action.  

Most of the time one person can only chip small hills out of the way, but without that one person nothing moves.