Why I feel Nauseated at Lunch Time

One of the consequences of being my mom's guardian and conservator is watching her eat.  When she was still living at her home I started skipping meals as I was worried I would upchuck watching her eat.  It isn't her fault.  She's shaky and it's just part of getting old, but it's a bit annoying at times.  Especially since she tends to pick the messiest meals.

I've gotten to the point that virtually all stomach, eating and drinking sounds drive me batty.  My husband even looks like he might burp and I'm giving him the stink-eye.  I realized my lack of forcing proper table manners in my kids so I'm making up for lost time.  I especially hate those horrible Aleeve commercials where they include the sound of actors swallowing Tylenol.  Really, is that necessary Aleeve?  I think we can figure out they've swallowed the pills without the sound!

Today's meal was at a certain "Mexican" restaurant.  She chose something that resembled an enchilada.  I usually get her a quesadilla since it's much easier for her to eat, but she was insistent.  Of course she couldn't even break it up so I tried to spork it to death.  I was mildly successful.  The scene, that followed, of melted cheese attached at various points made me excuse myself to the restroom for a short while.  I ended up spork-feeding my mother so she could at least eat something.  Clearly I won't be eating at that place for a long long time.

Now, since I do need to lose weight I really should hang around her more often, but I think I'll try running instead.  Or maybe starvation.

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.  

Sell, Sell, Sell!!!

Things are starting to move.  I found my mother a new doctor who specializes in Gero Psyche and I'm moving forward with the sale of her house.  The house is a thorn in my side that I would love to remove.  Permanently!

The biggest obstacle has been what to do with a lifetime of possessions that no one seems to want.  My mother was convinced everything in the house was worth a lot.  Anytime she talks about them she says, "they're worth billions, I tell ya. Billions!"  Well maybe in 3012, but in 2012 it seems like they aren't worth a whole lot.

I called an antique shop to have them come out and take a look.  He paid me about $100 and took a handful of items which left me one empty corner.  He suggested talking with another antique shop.  After a 5 minute phone call with the other shop owner I felt my Irish blood boil and I promptly hung up on him.  My good friend, Google, led me to an auction house in Virginia Beach who filled a 15 foot truck with household items and left me with some empty floor space finally. The auction is at the end of this month so we'll see what the items sell for.  There is still a room of furniture that I can't seem to give away. I can't even donate it! Firewood anyone?

It makes me happy and sad all at the same time.  But I have to get rid of these things.  And they are just things.

My mom is more aware these days and has been asking about her house.  It makes it really hard for me to say "I sold or gave away your things."  I know it's hard for her to hear too.  But she can't keep a houseful of things in her tiny room and there's not enough extra money to pay for a storage unit.  It's simply what has to be done.

So on to the repairs.  I've had two conflicting quotes for the repairs to the foundation so I called in a home inspector on a suggestion by auction house guy.  The verdict was better than I expected.  I am getting one last quote on Monday and then I will work on the financing part of the equation.  Because of the bad housing market it has been suggested I fix up the house prior to putting it on the market so I'll get more money for it and hopefully it will sell faster.

And one little side note.  I am working on spacing things out with my mom and reducing the work load of at least one of my volunteer jobs.  I started taking Yoga classes and I feel a whole lot better.  I just need to take time for me.  It's hard to think of that when someone needs you so much, but if I break down from the stress I'm no good to anyone.

If I say that over and over again in my head I'll eventually believe it.

Teaching My Daughter

My daughter is almost 8 and I've started to notice it's time to teach her the basic things of being a girl.  You know, the things that your mother teaches you as you go along so you feel ready for the transition to womanhood (and eventually motherhood)?

My mother never taught me any of that.  She was too busy running from imaginary soccer mom assassins.  A point for you, schizophrenia.

My older sister taught me a few things.  She taught me things like if you wear Chapstick you should smear it from your nose all the way down to the tip of your chin.  She would buy beautiful clothes for me in her size.  She wouldn't allow me to put on my makeup in the bathroom (although she did because she needed hers perfect), then she would laugh that it came out all streaky since there was no light in my room.  Hmmm, maybe those weren't the right things after all.

So I've gathered tips through the years on the right way to teach her things and I'm working on starting the process.  I've already taught her the basic things she needs to know, like using a spray bottle to help brush your hair in the morning to keep it from sticking straight up, flossing, brushing her teeth and not using soap in certain areas of your body, and of course the most important "no one touches you without your permission" talk.

I'm working on a bigger library of tips. A friend taught me a tip to get the tangles out easier by using a few drops of olive oil and combing it through.  Works like a dream.  I'll have to devote more time to research.  We aren't far from talking about bras and boys and my information stores are woefully low.

You may have taken my mom from me, but you didn't succeed in taking the mom from my daughter.  So that's a point for me, schizophrenia.

Balancing the Needs of Many

Caring for a loved one is time consuming and takes every bit of the patience you keep in reserve.  It's amazing how much a caregiver can get done despite the insurmountable task in front of him or her.  Often when you think you can't handle more you manage to pull it together because it's important to make things happen.  This is one of the most important jobs a caregiver will have in his or her lifetime.

I feel like I've managed pretty well through the difficulty of the past 18 months or so.  I think if I ever had a "well" mother and had this challenge laid on me I don't know if I could have managed.  Lowered expectations have a way of saving your sanity.

But my mom's recent hospitalization and Conservatorship work has taken it's toll on me.  My mother was in the ER for 3 days which basically meant my life had to stop for those 3 days.  I missed a Girl Scout Ceremony for my daughter.  My husband was able to take off work, but the guilt of not being available for my children is getting to me.  My kids' teachers are complaining I'm not watching their homework enough and checking things.  My kids are becoming increasingly disorganized and I have no energy to help them fix that right now.  I'm short with them more often that I can control.  I'm still trying to get my mother's house up for sale and had to set deadlines for family members to get the things they are interested in keeping out of her house.  I'm trying to get the house cleared out, cleaned up and fixed in time to put it on the market in March.

Oh and start working for actual real money.  Somehow have to fit that in.

Conservatorship

If anyone tells you that handling the money makes you anything other than the bad guy tell them to take a hike.  It's inevitable that everyone will take their time getting things done because they aren't responsible.  It's me who could get called in to court if something isn't done right.  If my mom's house isn't sold before her alimony payments end next Fall it's me who has to figure out how to pay her bills.  And to everyone else it's "what's the big deal?"  Setting deadlines makes you the enemy.  Without deadlines you are stuck in an endless loop of "I'll get to that when I have time.  I just have so much going on."

I was thinking of not fixing up the house, but my Realtor warned  me that I would be unlikely to get what I want out of the house and it will sit on the market.  She gave me the number of a company that will come out and just throw everything away.  I'm fighting the urge to call them.

Exhaustion is King

When my mother finally was admitted into the Gero Psyche ward at Norfolk General and she was settled on her bed I walked to the parking lot thinking I had lost every bit of fight left in me.  I was angry.  I wish I could say that feeling went away with a good night's sleep (as if there are many of those these days), but it didn't.  I've been really contemplating the usual daughter role of just being there to sign occasional paperwork and a visit once a month.

But then my mind drifts to all the times when I was a kid and in the hospital.  I spent more than my fair share in hospital ERs for my asthma.  From at least the age of 5 on my mother would drop me off at the door leading to the ER beds and I would spend the night lying in a curtained off area alone.  My breathing and the epinephrine shots made it difficult to coherently tell the medical staff anything.  I remember trying to ask why they were taking blood from me (I was 5) when I'd already had two vials drawn a few days before. I had two nurses jump on me to hold me down for a third to draw the blood.  Two hours later my mother finally came back and when they explained what happened she laughed and said that I was talking about the blood work taken a few days before.  I never let another nurse or doctor come near me with a needle for almost 20 years after that.  I would panic if I saw one anywhere.  Even if it was just a picture of a syringe.

I guess that's what's driving me. My mother can't speak for herself and I don't want her to go through the Hell I went through alone.  I really wish I could turn it into "well, she didn't help me when I needed it" but I can't. No one deserves that.

My mother is so much better these days. It's almost like night and day.  I spent all day Tuesday and Thursday just taking care of her this week.  Friday was spent paying her bills and organizing all of her notebooks and Saturday was spent cleaning at her house.

This is what my van looks like a lot these days.

And this barely makes a dent in the work.

On Thursday my mother said "thank you" for taking her to Dunkin Donuts.  Those are not words she says often.  I should be happy with the few "atta girl"s I get.  But all I wanted to say was "I've dropped everything for you, run myself ragged, my health is suffering (muscle spasms are just soooo fun) and gone above and beyond for you and you're going to thank me for getting you Donuts!"

I kept my cool.  I kept it through lunch.  And through shaving her legs.  And through clipping her nails.  And picking up prescriptions and bringing updated paperwork to her assisted living.  But I really need a vacation.  I wouldn't even mind another flu induced hospital vacation.  Okay, not really.  It's the exhaustion talking.  Maybe a couple of days in bed are in order.  Or better yet a week where I can be crazy busy working with breastfeeding moms while my kids are at school.  Then giving my kids my full attention when they get home.

Maybe I should stand on a Indian River Road with a cardboard sign that says "Will Give Lactation Help for the Altruistic High 9am to 2pm daily!"