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.  

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!