routerecalculation

There is so much to write, and so much to tell, I’m just so tired I can’t remember what I want to say, so I’ll keep it short this time.

You don’t know what that person is going through behind the smile. You can’t imagine the calm face that lady is trying to keep while she hears news on the phone that she doesn’t want to know. How many people around who do you really know? Really. Do you have any clue what’s happening in their life?

The reason we don’t know is because sharing is a sign of weakness. We’re scared of judgement and disapproval. It’s just so easy to throw out a statement based on what we think, rather than what we know.

I won’t preach on. My current state in life does not make me a bad person or a bad parent – just a regular person trying to cope with an extraordinary situation .

Hug someone.

Love someone.

Encourage someone.

Bake something for someone.

Stop the judgement

The decision had been made – ADTP (Adolescent Day Treatment Program) would be the way to.  The question was – when?  Our counselor was told the waiting list was 5 weeks.  A different counselor said it could be 2 weeks.  I remember the Dr. saying she had connections there….how do they make the decision anyways?  The reason we were going there was because my daughters diagnosis’ were so serious, going straight home with no support would be a bad choice.  We’d already spent 5 months in the hospital – if there’s a 5 month wait…….I didn’t even want to think…….

We got a call from the hospital about an appointment at ADTP the next week.  We would be meeting with one of the psychiatrists to see if she would be a fit for the program.  “Wait a minute, I thought it was already decided that she would be going there?”.  Once again, the disconnect between programs and communication was showing.  “Oh well,” I thought.  “At least we’re getting in the door”.  We were told the appointment would be an hour and 45 minutes, given instructions, and to make sure we didn’t miss.

I really didn’t know what to expect.  More counselors, psychiatrists.  Changing teams.  Change – never, ever an easy thing – especially with all of this.  The last time we had a change it did not go well at all.

The day came and I picked up my daughter at the hospital.  I was determined to be early, however it is never easy to get out of the ward.  You go over safety plans, sign a sign out sheet, talk to nurses……eventually you get out.  We got to location – a little strange but hey, we could do this.  We walked up to the door, and pressed the buzzer.  Shortly after heard a click, so I tried the door and it opened.  Once we got inside we didn’t know which way to go….up or down?  We decided up, walked through another door, and were asked to sit down and wait.  I had been so eager to be on time, that I had mistaken the appointment for 30 minutes earlier than it was, so now we had to sit and wait for 40 minutes.  That’s ok – we could wait.  Eventually a lady came out, and asked my daughter to go with her.  I got to sit and wait, longer.  I didn’t bring anything to do this time, so fortunately they had some magazines to look at, and I hadn’t used up all my data yet, so fb was always an option.

An hour and a half passed.  What could she be talking about?  What was she saying?  I thought we were through this already.  Eventually I was asked to come in the room.  They psychiatrist told me the words I wanted to hear.  “We need a 1% glimmer of hope from our patients.  I got that today, so we’ll take her in to the program”.  Music to my ears!!!  The next words were some of the most frightening I’ve heard for awhile. “Due to the severity of the issues we’re dealing with, you – we all, are going to have to be vigilant with the safety piece.”  Vigilant.  She was saying that until treatment is over – and beyond, we would not be able to take our eyes off her.  I don’t mean following around, watching everything she does, but it does mean never, ever being left alone.  “There may be more readmissions along the way, and we may have to stop and start, but we will hold a place for her.”  Readmissions?  We’re just starting to talk about the D word, and now I’m already planning to have to take her back?

When you take your child back, I’m told you have to do it from scratch.  All over again.  Emergency.  Waiting.  No guarantee on the same Dr., or even the same location.  ACH may not even be where she would be……………Oh well, I’m not going there.  I refuse to let my mind hover over something that isn’t even happening yet.  Let’s take this 1 step at a time.

Through this whole process, I have been thinking about relocating and trying to make sense of steps going forward.  One of the biggest things has been where do we live?  Seems to make sense that we should probably move to the city.  Closer to hospitals, closer to programs,  closer to my fiancé, closer to my family for support – just seems to make sense.  With one word that all changed.  Vigilance.  Where we live, it’s pretty hard to get lost.  There aren’t a whole lot of places to go.  No trains, busses, no public transportation, and the hills around the town are too exhausting and time consuming to climb.  At the very least, they’d take time to get past if you really wanted to get somewhere.  How easy would it be to get lost in the city?  I can’t even imagine going through what we have in a large city.  I would have had no idea of where to look. I have seen first hand, how effective our search and rescue is when called in to action.

Vigilance.  Like having a new baby.  So many things to think about.

The best thing is that there is support out there, and fantastic programs available.  I’ve even heard of new ones that are being created right now that are even more specialized.  Listen to the professionals, take time to think, and then follow your gut.  I don’t think we give ourselves enough credit, or else get just too tired to figure things out.  Listen to your heart.  You’ll know what to do.

Here is a typical example of one of my days since this whole ordeal began:

0400 – Can’t sleep.  House feels weird and brain won’t stop

0600 – Get up and get ready for work

0700 – Work – a few hours till my break

0930 – Hospital calling – it’s my daughter – (usually a good sign if it’s her)

0945 – Break over – work again

1300 – Lunch break / Counselor from hospital calls.  Update on progress or lack there of

1330 – Work again – pray phone doesn’t ring – hate the afternoon calls.

1500 – break – check emails/ phone messages.  Call hospital.  Why?

1630 – work done – stay longer and get extra stuff done

1800 – head to hospital for a visit or head home…….or stay and work some more.

2000 – call my sweetie and hope he’s able to chat

2100 – dinner.  Talk with hospital.  Update from my daughter and nurse.  Discuss any plans/appts for the week. If I’m not at home already, head home

2200 – laundry, scan fb, dishes (yeah right), answer emails, plan the next day

2230 – son home from work – chat for a bit – pray no call from hospital

2300 – accidentally doze off in my chair

2330ish – head to bed.

When I look at it, it sounds like just another day.  Mix in there calls from psychiatrists, extra clinics, nurses asking questions, escalations, consultations on medication and treatments,

Things have changed a bit now.  We’re working on the new program, and I have to do the driving at first, so we could add in a trip to the city and back in the morning and late afternoon.  Family counseling.  Group counseling.  Trips back and forth to ACH. We have some weird stuff happening with my daughters feet now too, and that means trying to get some attention from a different Dr., which can be like pulling chickens teethe.  Mental note to self – call hospital again in the am and ask for the consult again.

This is a little of what you will go through while you’re engaged with the Mental Health Unit.  How much or how little you’re involved is up to you, but I will tell you, the more you engage in the treatment, the more you will learn.  There is just so much to learn.

Don’t give up.  Things will get better.  Reach out for help.

The week after my daughter was admitted to hospital, I decided I needed to talk to someone, so I found a local counselor that I could go talk to.  I think the first session I spent about 2 hours there, crying my eyes out on her couch in dismay.  There were 2 main things she said to me that stuck in my head: 1.  Follow your mother instinct and do what your gut tells you to do, and 2. reach out for help to your friends and take care of yourself.  I took that first statement very seriously.  I felt I needed to be there at the hospital every for support  to show I was there for her, so I would go every single day after work, on days that I didn’t work, and would spend all my time there till 9 pm every night.  I’m pretty sure my boys forgot who I was during that time.  As the treatments strategies changed, I went whenever I was allowed and always made sure that I was flexible to be there.  Pretty much everything was taking second seat.

I went and saw the counselor again one, maybe two more times, and then just ran out of time each week to go anymore.  I was working, trying to spend time where I could with my boys, working more, and spending the rest of my time at the hospital.  I hardly saw my fiancé, and our plans pretty much got put on hold because of everything that was happening.  It was life was just humming along and then everything came to a screeching halt.  For each of those subsequent visits the counselor asked me what was I doing for myself, and who had I asked for help.  I told her I asked my dad to cook something for me (lasagna), and I asked a friend of mine who’s a foot care specialist for a free treatment because I couldn’t afford it.  That was huge.  2 big asks – I thought I was doing pretty good.  I didn’t think I deserved to be goaded in to more, after all, I’m a giver, not a taker.

I have always found great joy in giving, whether it be my time, an actual gift, a donation, or even just a smile.  Giving brings me great joy.  Receiving has never been easy for me.  My mom always told me that if you don’t receive graciously, you rob someone else of their blessing.  I’m super great at giving and telling people they’ll rob me of my blessing if they don’t receive (*chuckle*).  They usually roll their eyes at me, and then on we go.

Part of having a child at ADTP (Adolescent Day Treatment Program) is attending the mandatory Caregiver Support Group.  It’s a session only for the parents or caregivers intended on helping with the things we’re dealing with through this mental health journey.  Our first session was this week.  It was incredibly awkward, sitting in a room with a lot of parents, and my x, talking about our feelings, and learning about some of the things they teach our kids.   I sat and listened to the other parents speak, and if they’d done their homework from the week before.  What was their home work?  They were to reach out to a friend, and ask for help.  Almost every one of the parents in the room talked about how incredibly hard it was to do, and about half of the parents didn’t do it at all.  The new parents had to share a little, and speak about what help we’ve asked for along the way.  Not one of us had much to share.

I have received help along the way.  Two friends sent me a small sum of money, allowing me to pay for a parking pass, and also to pay for a new sticker for my license plate so I could continue to drive.  That $75 was a gift out of the blue that I was incredibly humbled to accept.  Someone at Christmas anonymously bought me a new stove after they found out I hadn’t had one since May of last  year.  I had spent so much money on medication, treatments, and everything else that I couldn’t afford a new one.  I cried so hard I was speechless.  An anonymous family heard that we were struggling and bought some gifts for my kids and delivered a turkey, also at Christmas.  Little did they know I hadn’t bought a single gift – I had no funds to do so.  I still don’t know who those people were – and was tremendously blessed by them.

The question was still looming.  Who, have you actually asked for help?  Any kind of help.  A walk, a meal, someone to watch the kids while you take a break (not applicable in my case), a massage, coffee, parking passes, lunch, help around the house.. anything.  Who have you actually asked – and mom doesn’t count?  I couldn’t answer.  I don’t ask for help – just really not good at it.  It makes me feel weak, needy and actually makes me feel horribly guilty.  Plus, then I have to talk, and explain, and I’m just far too tired to do either.  I’ve been told so many times by people in my life, that if I need any help, just ask – and yet I truly wouldn’t really even know what to ask for.  I’m a strong adult.  God gave me hands, feet, a brain – I should be able to do this.  There are people far worse off than I that need help far more than I, and I should probably be helping them.

At the end of the group, we were given home work.  First, for the newbies – ask for help with something.  Secondly, chose a self care activity.  The second is easy.  I just so happen to have booked the next 10 days off for vacation (my boss made me but it still counts). I ordered a massage gift certificate with my airmiles, and I plan to take it.  (There’s about 100 things on the list we can choose from).  I am going to go to a movie – at some point.  I’m going to bake something – and not burn it. So there – that’s 4 things  – and all I have to do is complete them.  My boss forbid me to walk through the doors of my store over the next 10 days – so that shouldn’t be hard.  All I have to do is call on the certificate – should be easy.  I have a free movie ticket I’ve been saving – piece of cake!  Baking – that shouldn’t be too hard – I have 3 bananas turning black on my counter – just got to do it.

That brings me back to my first bit of homework.  How do I ask for help?  What do I even ask for?  What would you ask for – if you were in my place?

Part of this whole crazy process is the pleasure of dealing with some really great professionals. Our team, for the most part, has been really fantastic. They will engage with me as much, or as little as I want. If I show the willingness to learn and engage, they do their best to communicate and teach.

Recently our psychiatrist got a new resident. I realize that the ACH is a teaching hospital, but changing teams along the way can be very hard, and in our case, almost disastrous.

I am not an expert in many things. My education is music, and most recently coffee. I work in the service industry, so I deal with many different kinds of people all day long. I learned when I was young that communication was important, but have realized even more in my career that it is essential for success.

Now I’m not the kind of person to cause a rucus. I’m pretty reasonable and fairly easy going. I’m not a scholar, and school wasn’t my strong point, but I don’t think that should really matter. Treat others the way you want to be treated. Love one another. Words im passionate about. I have taught my children to act that way, my employees, and that’s how I act. HOWEVER, if you want to ruffle my feathers, talk to me like I’m stupid, or treat me like I’m dumb. Go ahead. I dare you. The result isn’t going to be good for anyone – especially if one of my cubs is involved. The mother bear will rise and show her teeth.

When my daughter was first admitted, we talked about depression medication and that it would be necessary. We were given 2 options (sort of anyways, we were told about 2 different kinds), Prozac and Zoloft. Both have positives and both have risky side effects. One side effect is increased suicidal thoughts. This is terrifying, especially when you’re dealing with that already. Make it worse? Really?

I wanted to go with the Zoloft. One of my boys has had great success with it, and I used it for post partum depression. The Dr considered that but decided Prozac was the way to go, so we agreed, listened to the risks, signed the forms and forward we went.

As time went forward we slowly saw a small brightening of her mood. Within a week we had an escalation, then another, and another. They decided to add on a drug called Syraquil. It makes you drowsy, which could slow down the suicidal thoughts and increase appetite, which in this case would be good. At first it knocked her out and visits were like seeing a zombie. She said she was so tired that she couldn’t do anything if she wanted to. As she continued to get accustomed to it, they increased the dose. Eventually it wasn’t working enough, so they asked if they could add a small morning dose to ease the morning anxiety. Once again, we agreed. That one wasn’t so easy – took some convincing to get my X to agree but I felt it was ok.

Things seemed to improve slightly, but we were now at a large dose of the Prozac and 2 different doses of syraquil, yet the improvements didn’t seem big enough.

Along the way my X was pushing for shock therapy treatments. He wanted her chipped (still does), and would always be disagreeable to increases. They have to have approval from both parents, so sometimes that is good, and sometimes more difficult.

After 3 months of being stuck, we talked and requested a medication change, with the understanding that she would remain in hospital till the change was completed and she was stable. Within days I noticed a change, and the Dr agreed, so we decided to continue forward, now on the Zoloft. We made a plan, a solid plan, and were going to stick to it:

Change meds
Stabilize meds
Get in to ADTP
Transition from ACH to ADTP
D (discharge)
HOME!!!

Seemed pretty clear to me, to the counselor, to the psychiatrist, but not to the resident. The problem came in when the Dr. (Psychiatrist ) went on a holiday for 2 weeks and left the resident in charge. Now remember, parents always have to give approval for starting, stopping or changing medication.

Problem 1.
The resident was having a session, and told my daughter that she was just looking for attention, and needed to get with the program. If she didn’t, she would get transfered to a facility and be held for 5 years until she was 18. Distorted thinking or not, this sent her in to a tail spin. When I went in to visit, she was beside herself thinking I was going to have her locked up for 5 years. I was horrified, talked to nurses and they had no clue of any facility like that existing. The next day I called the resident to discuss the situation, and where this facility is, and what on earth he was talking about. Remember how I said I don’t like being made to feel stupid? The mama bear appeared! I was so upset by his condescending, disrespectful tone to me. I couldn’t shake it – and I couldn’t let it go. All he did was side step, and speak to me like I had no idea about anything. I called our counselor, who gave me the head Dr’s direct number and registered an official complaint.

2. D
We don’t say the D word, because every time we do bad things happen. After that session, the resident decided they may as well just send my daughter home. “SAY WHAT?!” That wasn’t the plan. I called again, and he said he saw no reason to keep her there. Again, I called and complained. My words were heard and rhe plan would continue.

3. Medication change
The resident called me and said he’d like to boost the syraquil to a larger morning dose. I guess he figured if he kept her tired enough, she wouldn’t do anything. The plan was to increase the zoloft, not the syraquil. I asked why the change and he couldn’t give me a reason. He didn’t call her dad for approval, and went ahead and doubled it. After 2 days I found out and called again. This time I asked to speak to the head honcho to find out why dope her in to exhaustion instead of treating the depression? At the end of the conversation we couldn’t agree, so we agreed to disagree. I asked for the increase to stop, and for no changes to be made till OUR Dr returned and we could discuss the plan again. Do not pass go and do not collect $200.00!

Troubled with all of this, I called our counselor and stressed my concerns. “I’m no Dr and I’m pretty sure he’s not a Coffee Master. I don’t trivialize him when he doesn’t know what’s in his cup. I expect the same treatment back”. They got the point.

You have the right to know what’s going on with your child and what course of action is being taken. Don’t be afraid to ask questions and don’t take everything as gospel. Have conversations, stay in touch. Call for updates, request face to face meetings and if need be, go a step higher.

They know me well at ACH. I wave to cleaning ladies, smile at porters. Security nods their heads, and the cafeteria lady knows I’m just getting hot water – same as always. The angry parking lady sees me pass her almost every day. The nurses, and there are many of them, pretty much have a nick name for me now they’ve seen me so often. They drink my coffee, have donations in their craft room from my company, and even occasionally get a batch of Dr Who cookies or muffins to munch on during the night shift.

Stay in touch. Do your due diligence. Knowledge is power – be proactive, not reactive. Most of all, be respectful. It takes a team to make this all work.

We have a plan. Small detours happen, but our goal is in sight.

Get help. Reach out. You can do this.

“We’re not taking your daughter in to the eating disorder program. We think she’s better suited for ADTP – Adolescent Day Treatment Program ”.
Those words will ring very clearly in my ears for a long time. It was explained to me ( and I think I’ve already mentioned this before), that out of the kids who die from eating disorders, 50% of those deaths are from suicide. Treating the eating disorder is like treating a branch. You still have a sick tree.
After that appointment, I had to head back to ACH for an appointment with our family counselor to discuss how things had gone at the meeting. I was feeling down, and discouraged. I sat down in one of the counseling rooms, and talked about the morning, going alone, listening to my options. We started talking about the ADTP program, and the fact there is a waiting list, so although we didn’t know exactly when she’d get there, the chances were that she would. This was a little frustrating because if I talked to a Dr., they said 2 weeks, and if I talked to a counselor they said up to 5 months, and nurses – they had no idea. My emotions were starting to feel like a yo-yo.
The counselor talked on about the environment, what we could expect, and then she said, “the age of the kids at ADTP is 13 – 17, but mostly 15-17. Your daughter will be the youngest person there. They will discuss strong topics, including suicide, depression, bullying, drugs, even sex………..”.
At that moment time stood still. I was holding a book in my hand and covered my face with it, and the realization that life would never be the same became very, very real. My little girl was never going to be the same. She was going to be with older kids. Suffering older kids. I swear I felt my heart tear apart inside my chest. I’ve said before I’m not usually a crier, but at that moment I cried, out loud – I actually sobbed out loud, like I never had in my life. I felt for a moment that my child had died (or at least I’m pretty sure that’s what it would feel like). I’m not meaning to disrespect anyone who’s lived through that, but it was like a movie, where you see someone burst out with hideous sobbing, unable to even sit up in their chair. I covered my face and just couldn’t quit. My little girlie…………
I apologized to the counselor and was embarrassed, after all my daughter is still here and my behavior must have looked ridiculous, but the shelter of the ACH was going to be gone, and now we would be in the real, tough, scary world. I felt heartbroken for what she has been through, what my boys, my fiancé, my family, and what I had been through, and I knew at that moment it wasn’t about to get easier any time soon.
Here is a bit of info on the Adolescent Day Treatment Program in Calgary. This is a referral program only for kids suffering deeply from all of the issues my daughter is going through. It’s run by the same man who runs the Eating Disorder Clinic in Calgary, so they are familiar with many different issues. Once your child is accepted, they go in to a 3 part program that will eventually integrate them back in to the normal school system. They are assigned a CBE teacher. Yoga and phys. ed. are mandatory classes, as well as 2 other classes each day. They also get intense group, private, and psychiatric counseling by one solid team. Parents must attend a caregiver support group once every 2 weeks. There’s a cook on sight that makes breakfast and hot lunch for the kids. They attend daily but dont go on stat holidays or CBE PD days.
Really when it boils down to it, the program sounded great (once I was past the shock of how quick my daughter was going to grow up). The kicker was the transportation. We don’t live in the city, nor do I work in the city, but my daughter was going to have to be there every day and the ACH wasn’t going to provide transportation. When I got home I decided to email the principal at my daughters school and ask if there were any provisions for transportation through our school board. If not, I was hooped! To my amazement and delight, the school division we are in does provide transportation for students needing support in different districts. AMAZING NEWS! Absolutely a completely amazing piece of news. The stress of transportation would no longer be something I have to worry about. Complete relief!
There is help out there, and I’m learning that all I have to do is ask. This isn’t an easy thing for me, but I am learning. I’ve been told over and over and over again by my own counselor, and by my daughters family counselor to ask for help, pull in my resources, this isn’t time to try and be a super hero. “You need support” they always say. I find it much easier to give than to receive, but in this case, I was ready to receive with arms open! Having that transportation help was the difference between hardship at my job, safety risks, and knowing that I know where she is from when she leaves home in the morning, to when she returns home.
If you are suffering through this, or know someone who is, ask for help. Call the help lines, go to the hospital, talk to someone, DO SOMETHING.
Get help – don’t give up. There is help out there – and people need to know. Don’t be afraid to talk about it.