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.  

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.

Time To Take Action

One of the most important things anyone can do to increase awareness of Mental Health care funding is to make sure our elected officials are aware that it matters to you, the voter.

This goes for anything that you care about: bad roads, making sure mothers can breastfeed in public without being hassled, school funding, vaccination requirements, light rail etc.  The only way to make a difference is to make yourself heard.  So this is a public urging for all of you to tell your elected officials at the State, Local and Federal level what matters to you.

I'm in Virginia and Gov McDonnell just announced his new biannual budget for 2012-2014.  You can read it here.  The part relating to Behavioral Health is on page 6.  It calls for a $30 million increase to the budget, which is not near enough to help everyone who needs it.

So speak up.  Lots of people are counting on you.  If you don't know who your representatives are in the General Assembly here's a link to find out.  And if you need to know who your Federal representatives are click here.

It will take so little of your time, but if enough of us spend that time it will make a difference.

Goodbye 2011! Don't let the door hit you in the butt on your way out!

This is probably the best time of year for me.  The business of Christmas is over with and we ready to put the troubles of the past year behind us and move into the New Year.  Although I am expecting this next year to copy the past two years I will try to remain hopeful that things will change.  Without hope no one would get out of bed.

So here's what I wish for everyone out there for 2012!

I hope our lives find balance and when we have trouble finding it on our own that good friends help us navigate our way back.

I hope that everyone gets the mental health treatment they need regardless of cost.  And remember a good friend is always around the corner when you need him/her.  Sometimes you just have to search a little further and sometimes you never knew who that friend was till the very moment when you needed him/her.

I hope the politicians who decide budgets remember that those who cannot speak for themselves are not invisible.  

I hope everyone reading this takes time for themselves and remembers that they are important.  Everyone makes a difference in this great world we live in.  You matter more than you will ever know.

I hope everyone remembers that the people around you are important too.  Using your turn signal, letting that driver in front of you at the exit ramp, picking up litter in the park or holding that door open for the person carrying so much makes a difference.  Let your love for other people show.  You might just make their day.

When you need a friend, find one.  Someone is always close by. They just have to know they are needed. And someday you might just find that you're the one someone needed.

Reach out to a friend in need.  And listen, just listen.  It is harder than you'd think, but it's more valuable than anything you could buy, borrow or steal.  

Goodbye 2011 and Welcome 2012!

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.

The Ghosts of Christmas Past

Today is Christmas Eve.

And I feel haunted.

This year I should be happier.  My mother is improving and is not living by herself anymore.  Last year I went out of town at Christmas and then a huge snow storm hit leaving her alone for days.  I had 3 siblings in the area, but no one could reach her because of the bad roads.  And she wouldn't answer her phone.  Talk about panic!  This year she's in an assisted living with a back up generator and plentiful meals and people there to take care of her medications so we don't have to.  That should make me happy.

My mind is drifting to all the Christmas' we had as kids.  My mom was always sick, but it was the one day of the year she tended to reign it in.  She allowed my Grandmother (her mom) to visit.  It was the only time of the year we saw a single relative outside of siblings and our parents.  One year we even saw our Grandfather (her dad).  He was always welcome, but rarely took the effort to visit.  The other relatives were barred from visiting.

Mom and Dad tended to fight less on that day.  We actually got to see our father. He was normally at work every day till very late so it was a treat to see him.  And since McDonald's was closed we usually had a home cooked meal.  Yes, there were some years we made what we affectionately called "Crap Macaroni and Cheese," but there were quite a few nice years in there too.

It's a lean Christmas for our family this year because our savings went to home repairs and the legal costs of  Guardianship and Conservatorship.  I still have the worry of clearing out my mother's house to sell.  It's like a specter hanging over my head till the walls are painted and the For Sale sign is posted in the front yard.  My life is on hold and I hate that Schizophrenia seems to have so much control over my life.  It isn't fair that it has so much power and I have so little.

I know I have a home and two beautiful children and I should be thankful for what I have because others are less fortunate and blah, blah, blah...Just because I didn't win the "who has it harder" contest doesn't make my challenges any less difficult.  I feel like I would gladly trade my difficulties for the average American's difficulties.  Geez, job loss and eviction as your biggest worries sounds like Heaven to me right now.  And I know that's a horrible thing to say, but I can't help but wallowing.  I've earned the right to spend a few minutes feeling sorry for myself.  I'll be spending the next few months selling my mother's house and weeding down the volunteer commitments I have.  Some of those commitments I will miss and others I will not, but I'm irked that Schizophrenia gets more say in how I budget my time than I do.

I will put a smile on my face and make tomorrow as wonderful as I can for everyone else.  I will not subject my kids to a crying mess of a mother.  That certainly won't make any of us feel better.

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!"