The Eternal Unibrow

A few months ago I was talking with some friends about moms.  One friend was telling us the story about her mother's final months.  It was sad and horrible for her to watch and I know losing her mother was devastating.  Reminds me I'm not the only one with struggles.  This brought the conversation over to the challenges I've had taking care of my mom.  My sister and I had just spent a month looking for an assisted living for her live in and get her as healthy as we could after a long hospital stay so I guess I had assisted livings on the brain.  So the conversation went over to my worst fear...

My worst fear in life (at the moment) is not getting Dementia or my kids not living up to their full potential, or my mother getting sicker.  That would be normal.  I guess I just see those as the ups and downs of life that are expected and nothing to fear because you can do little to change what will happen.  You handle things as they come.

My biggest fear at the moment is living out my days in an assisted living facility with a UNIBROW.  

Now when I mentioned this the entire population of the NSDAR's Historian General's office burst out laughing.

Now, I still am not sure why this was funny because really I was being truthful.  But I guess not everyone is on the same thought pattern as me.  My sister and I combined visited dozens of assisted living facilities (ALF) and one of the main questions we brought up was about grooming.  All the places had some sort of "beauty shop" where hair was washed, cut and styled.  After telling us about these wonderful services I would always ask "do you provide waxing or hair grooming for other parts of the body like the face or legs?"  Every person I asked looked like I might need to be locked up somewhere and medicated heavily.

When we are young we think nothing of what grooming habits we will be able to keep up when we are old.  That's normal.  I'm not a vain person (I don't think).  I rarely wear makeup.  My hair is wash, dry, brush (pony tail?) and go for better or worse.  I have started a love affair with yoga pants and t-shirts that are at least mostly stain and hole free.  But I try to never miss a waxing appointment.  Big caterpillars over your eyes that join in the center just aren't attractive on anybody.

These days I spend time clipping my mother's nails and shaping them so they won't snag her clothes or scratch her skin.  I've on more than one occasion convinced her to bathe with the promise of shaving her legs afterwards.  I bought an electric razor now for that purpose to cut down on the chance of nicks.  It was difficult as a kid to learn how to shave my own legs without cutting myself.  Imagine shaving the legs of someone who wiggles.  Some days I help her dress and put on her deodorant for her or comb her hair.  She has cradle cap from lack of hair washing.  She was never great at washing her own hair, but now that she's in an ALF we have to remind them to wash her hair and she often protests.  It's hard to see her like this.

So what's your biggest fear?  Where are you in your life that makes that a fear?  Do you fear McDonald's because of the return of skinny jeans?  Do you fear health problems?  Do you fear the mail carrier because of the bills or bad news he/she brings?

Love it or hate it but fear drives our decisions in life.  Right now I'm fine with my eyebrows driving mine.

Communicating Through Mud: it's not just for kids anymore!

I haven't shared a funny (ish) blog post in a while and since schizophrenia tries it's hardest to take the joy out of most things in life I feel it's long overdue.  So I will share with you what it feels like to be me these days.

Now I have a BA in Communication.  I feel like I'm a pretty good communicator.  I spend a great deal of time choosing my words carefully so that the impact I want conveys to the other party.  I help run support group meetings for breastfeeding moms, a delicate job in itself and I feel like I do a pretty good job.  What usually gets me in trouble is over analyzing what people say.  I remember the first meeting I led.  The wonderful person who trained me said "you did a great job! Gave lots of information!"  Now at first I felt proud that I had done a good job.  But then I analyzed...

and analyzed...

and analyzed...

and somehow I started to wonder if she really meant I did do a good job.  Did I talk to much?  Sounded too expertish? Oh My God I'm a FREAKING FAILURE!  THEY'RE GOING TO NEVER LET ME BACK IN THAT ROOM AGAIN!!!

Part of me thinks it's an asset to analyze so much.  But then I realize how much I'm reading into people's words or body language.  So people become big puzzles I have to put together in my head.  I have to hide when people discover I'm staring.  And since I can't open up anyone's brain and read her thoughts I never know for sure if I'm reading someone the right way.  Then I want to just avoid people because cats are just easier to read.  Yes I want to be THAT cat lady.  Life would be simple, yet full of fleas.

I manage okay.  I get through life being able to at least communicate a little.  I think at least half of what I say makes sense to at least half of people.  But I'm having my doubts on my abilities to even handle basic communication.  Recently I had a conversation with my daughter's teacher which started with me trying to find out why she was struggling in school and ended with me sounding like a horrible bigot in the teacher's eyes.  Is my brain going?  Did my unclipped tongue tie decide that now it was going to exact revenge on my speaking abilities?  Am I saying something different than what my brain thinks it's saying?  Did someone install a speech changer?  Am I getting dementia in my 30's?  Am I paranoid?  Why do I hear laughing?   Ahhhhhhhh!

But I calm down, drink some wine and I feel like I just overreacted.  Obviously I can speak and dementia in your 30's is unheard of, right?

Then cue the communication with my mother's assisted living facility and the doctors. I'm starting to feel like I'm talking through a thick wall of mud.  This was a conversation a few months ago I had with the director of nursing.

Me: "since we're having such a problem with the doctors signing orders is there something I can bring like a med sheet they can sign."

Her: "no, there's no such thing."

Me: "can you give me anything to make this easier?  I feel like I can't explain to them what you want."

Her: "no, there's nothing.  I'm just going to have to treat these doctors like children because they won't do their jobs."

So fast forward to today with the doctor.

me: "I know it's an electronic prescription, but I need something for the assisted living facility to honor the change in dosage.  Can you write something?"

Dr: "all right, I'll do it this time but next time they need to send you with a copy of the physician order sheets so I can just make the change and sign it.  Ask for it a day or two in advance so they can get it together and bring it when you come next time."

Me: "okay, I'll get them to do that, thank you.  Oh you didn't write the diagnosis on the prescription..." Dr walking into another patient's room

Me (to the nurse) "can you write the diagnosis on here.  They are going to hassle me when I get back."

Nurse: "no, they already know what it's for."

Me: (back at the facility) " here's the med change."

Her: "geez okay he needed to put the diagnosis on here."

Me: "I know. I asked and they said you had it.  He also said he needs me to bring the med orders or something with me next time."

Her: "med orders?  There's no such thing."

Me: "well, isn't it one of those sheets on your desk."

Her: "no, this is something else.  Did you get the physician order sheets before you left.(shows me what looks like the identical sheets I pointed to on her desk)."

Me: "uh no, I think that's what he wants.  You've never given me any."

her: "I've given them to you every time."

Me: "no, I think I would remember that.  I didn't know I should ask for it."

Her: "yes you should get a copy of the physician order sheet every time you take your mom to the doctor.  But I know I've done that for you before."

Me: "I can assure you I've never gotten one.  Maybe my sister has gotten one when she's taken our mom to the doctor, but I didn't know I was supposed to get it (didn't mention I felt like I had asked for the sheet before and was turned down)"

So I feel like there is some special language these people are speaking and I feel like I understand what they are saying, but when I ask for things not using their special language they seem to have no idea what I'm talking about.  When I say "med orders" it doesn't mean "physician orders" to them and I'm left not understanding why that isn't close enough.  Why do I feel like I'm in Spain again after 4 years of spanish classes trying to order ice cream in spanish and being looked at like I'm speaking feline?

Does anyone know if Rosetta Stone has a course in speaking "assisted livingese?"  I clearly need an interpreter or a basic course in "Annoying terms in the medical field you must get right or they will think you are a moron."  Maybe I can start writing on my arm when they talk so I can keep careful notes with exact terms.  Or bring in a stenographer.  Or maybe go to medical school so I understand it all.  Or maybe......

Does anyone have a spare straight jacket I could borrow?

Organization by Fire

Those of you who know me in real life know that I am the last person you would called "organized."  Up until the last few months my organization system has consisted of a series of piles of paper.  Now if you were to ask me where a particular paper was I would know it was 6 sheets down from the top and would be able to find it within seconds.  If my husband or one of my kids moved said pile to look for something or because it was in their way the pile was dead to me.  I would search the house for hours for the pile and wouldn't find it because it was moved a foot to the right.  But I almost never pay a bill late or lose things despite my house looking like a hurricane blew through it.  I have a very dear friend whose house is always immaculate, but she can't find anything.

Since becoming Guardian and Conservator for mom, PTA Treasurer, Book-keeper for my little non-profit chapter and my volunteer work with scouts I had no choice but to become organized.  It's not perfect, but it is helping take the stress out of finding things.  There are just too many facts swimming in my head for me to keep track.

I've been receiving lots of compliments on how I'm so organized for my mother's records so I felt I would share with you how I've done it.  Maybe this will help you with your medical records or records with your medically challenged loved one.  I will say I enjoy the satisfaction of being able to pull out my notebook and immediately find records and dates when others feel the information is impossible to find or they disagree with me.  The notebook became an invaluable tool when dealing with the Assisted Living Facility this past two weeks.  And I can almost feel the fear in people when I whip it out.

My older sister a few years ago mentioned to me that she decided to make sure she got all her children's doctor's business cards and put them in a scrap book for her husband just in case anything happened to her.  I landed in the hospital earlier this year with flu complications.  With my health history there have been a few times I've been almost certain I wouldn't live to see morning so this made me feel the need to keep records that I could leave behind for my family in case something happens to me.  Car accidents, construction accidents, work accidents happen often enough and none of us truly knows how long we have on this Earth.  So I started a system of keeping business cards of doctors in baseball card holders.  Then I started putting cards from people who have worked on the house, cut my hair or give me quotes for work.  It's really wonderful having them all in one place and all I have to do is open the folder and see which card I need within seconds.

So I started to feel I needed to keep really good records for my mom.  You never know when you need to have the fax number of the pharmacy or the address of a doctor quickly.  So I'll describe below how I have set up my records.

I keep one notebook with me to carry to and from appointments.  This is the list of things I have in the notebook.  I made a smaller one for my sister for her to keep track.  I keep most things in plastic sleeves so they can be removed quickly when needed, but often viewed without having to be removed.  Other things just have punched holes so I can access and write on them without having to fiddle too much.

1. A pocket for keeping receipts, scripts, checkbook, pen or anything little that can easily fall out and float away
2. A calendar I printed from a website.  This allows me to write down mileage for medical visits, dates of doctor appointments and I also put notes about what I did on visits with my mother.  If I clip her nails I write it down.  If I had to give her a bath I write that down.  If I have a problem I write that down and write when it's resolved.
3. A contact sheet.  This is for the people I speak to on the phone and need to write down their information.  This way I don't have dozens of slips of paper floating everywhere.
4. Photocopies of my guardianship/conservatorship qualification letters so I can give a copy on the spot
5. The originals of the qualification letters so if someone needs to see the original it's immediately available
6. Photocopies of insurance cards
7. Medication delivery record since that's clearly needed now
8. Copies of medical orders and med lists and prescriptions.  Appointment sheets if printed for me
9. Some medical records, insurance letters, pharmacy information and similar information
10. Directions if I've had to print any
11. Baseball card sleeves filled with the business cards of people I talk with, insurance cards and appointment cards.  I always ask for two of everything if possible so my sister has one as well.
12. Ledger paper to record checks written

I keep a notebook at home which contains:

1. Bank statements
3. Account numbers that I may need to find quickly
2. Medical records that I don't need to carry with me, but should keep on hand
3. Lawyer information that details my requirements as conservator
4. Mom's birth certificate and Marriage certificate
5. Copies of my reports for the court
6. Originals of the order written by the lawyer dictating our responsibilities as guardians and conservator
7. Anything else I feel is important that I'd like to be able to find quickly

And I have a 12 month pocket folder for all receipts so they are easy to find.  I also have a monthly financial report I created with the help of Excel and my husband.  I modeled it after the PTA's reports.  Volunteering has helped me get so much training for free and has helped me immensely.

It has eased my mind that I have things organized.  Unfortunately spending time on this has taken away from organizing my house.  Some days I can barely walk in it without stepping on something.  I need to get my kids or hubby to start doing more chores.  Or hire a maid who works for free.  Yeah I don't think those things are going to happen either.

Resolution - I hope

Today was the day to meet with the Senior Services Ombudsman and the director, director of nursing and one of the Med-Techs at my mother's assisted living facility.  I have to say I feel it went better than I expected.  The ombudsman was awesome and really helpful.  I have no idea how we could have done this without him.

I stated my case to everyone and it seems that even though I felt I was informing them there was a problem they did not listen to me at all.  It was only when my sister went up to the facility 4 days after I informed them of the problem they claim was the first they knew about the situation.  I pointed out that everytime I've tried talking with them about anything recently they have seemed distracted and have made me feel dismissed.  I guess that's because they were distracted and were dismissing me.  And here I thought it might be all in my head.

Funny I spent the first 20 years of my life trying to become invisible.  Now I'm fighting for people to notice and listen to me.  Hmmmm.  I guess I'm hard to please.

I think what helped me the most was that I started tracking the days I was visiting my mother or taking care of things for her.  I primarily started that (and made one for my sister) to keep track of mileage and appointments, but it has become invaluable now because I can write on it what happened at each visit.  When I was able to tell them how many times I was physically in their facility during the time period in question, what days I came in to talk about medications and when I delivered medications or needed supplies that helped make my case credible.  We pointed out some huge holes in their communication and have come away with a plan which I hope will work.  I really would hate to move my mother from this facility, but if these changes aren't made I see no other option.

Today the agreement was...
They will contact me if my mother refuses any medication.  
They will make they give me a 10 day notice before her medications run out.
Any falls will be documented (as some have not been)
They will be better about communicating with each other and with us.
I will make appointments when I need to talk with them (I'm concerned about this given I often need to speak with them just after a medical appointment and never know when I will need to speak with them until the appointment is over.  But I was told I can send an email and the director will receive it on her phone and will be able to accommodate me quickly.  Here's hoping).

The Ombudsman will go back to the facility to make sure they are compliant with the plan and we will meet again in a month to see how things are going.  My sister brought up that if there are problems with our mother's meds the facility should really be checking every resident's sheets to make sure they handling those appropriately   Initially the directors were resistant, but the ombudsman said the expectation is that a problem has been brought to their attention and they are expected to implement the fixes facility wide.

Here's hoping in a month it's nothing but sunshine and rainbows again there.

And my mother is doing better today. She was still very delusional and agitated, but improved over the previous week when I picked her up.  After her appointment she received her Haldol shot.  About 30 minutes after that shot, she was smiling, the shakes had gone away and she was a million percent better.  Here's hoping she doesn't start to tank as the shot wears off again.  I guess if she does we know she can't handle 4 week intervals.  And the doctor assured me that the issue with her Celexa (the drug she missed at least 9 times) wasn't causing the present issue.  I'm not sure if I buy that completely, but at least it made me less worried about it.

I've been told many times that people have never seen such active family members when it comes to caring for a mentally ill or aging loved one.  I find that sad, but understandable.  This has caused me so much stress.  I feel like it is chipping away at me.  But since it hasn't destroyed me in 36 years of fighting that must mean I'm made of tougher stuff than schizophrenia is.  My mother's illness has taught me to fight for what I believe in, so in some ways I should thank it, although I would really really rather not.

The Answer Doesn't Make Sense

Last Friday I told you about a situation that came up with my mother's assisted living facility (ALF).  We discovered that a 30 day supply of medication lasted 39 days.  The facility directors kept claiming they didn't know where the records from previous months were kept and that they'd have an answer for us on Monday (today 10/3/11). 

Well the answer today was that my mother was refusing medication.  Now I don't believe that for a second.  My mother is convinced that if she doesn't take her meds she will go back to the hospital and she'll do anything to stay out of the hospital. Last week the Director, the Medical Director and one of the Med-Techs showed me the September medication log that showed only that she had not missed a pill the entire month of September.  There was nothing on those sheets to indicate refusal of meds.  This information was on some other mysterious daily notes log that could not be located until now.  If she indeed refused 8 days of medications over the course of a month the family and the psychiatrist should have been notified and she would have been hospitalized.  Plain and simple.  

So today I was finally able to reach Norfolk APS who put me in touch with the Ombudsman for families communicating with ALF's.  The Ombudsman agreed something wasn't adding up so he's meeting us at the facility for a meeting with the Medical Director on Thursday to get some answers.  I'll let you all know how it goes.

But as it stands right now either way they have made a mistake, either through neglect, forgetting to give meds or just not keeping adequate records.  This could have cost my mother her life.  What a ridiculous bunch of people.