This Doesn’t Sound Good

Robert had an appointment with the neurologist Tuesday afternoon. 

It is a day later and I am still processing what happened.  Still kind of spinning, actually. 

We have had a rough few months trying out a new med and fending off an overwhelming amount of congestion (which I see as an oncoming pneumonia train). 

We have seen a rapid decline in just about everything as well as a lot of new behaviors and symptoms. Things have declined so much Robert is using a wheelchair at Day Program and sometimes around the house. 

He can’t move his right leg, is very irritable and downright belligerent, still has constant congestion, excessive saliva, flaky scalp, gum and water sensitivity, decreased memory, decreased appetite, trouble with spatial awareness, difficulty standing from a seated position and does this coughing/choking/gasping thing that scares the heck out of me.

Phew!

Robert would sleep 18 hours a day if we let him.  Actually, he does anyway because he falls asleep in the car, at Day Program, and at home. This week we started sending him to Day Program only three days a week so he can sleep in as late as he wants the other days.  On Tuesday, he slept until 12:45.  It’s not like he’s up all night either – he is in bed by 7:00 p.m. most nights and asleep shortly thereafter. 

I was convinced all this was caused by his new med, Trileptal.  Either that or he was experiencing a decline from a lifetime of uncontrolled seizures, surgeries, medications and falls. There is not a lot of research on what happens to adults after all this so I couldn’t figure this out. 

Mr. Google failed me.

I pushed for a neurology appointment but couldn’t get one for a month.  I was finally able to get it moved up a week which was something. I wanted suggestions on how to manage this and wanted to know WHY this was happening. 

After running Robert through a battery of tests and having him stand and asking if he felt sensation and checking his reflexes and grip, the neurologist asked about his incontinence.  Yes, he has bladder incontinence and has also developed frequent bowel incontinence. 

I was prepared to be told this was just the natural progression of uncontrolled epilepsy. I expected to have that discussion. I was absolutely ready for it.

Instead, I was given what I can only describe as the worst news possible. 

Cervical Disc Disease with Myelopathy.  The neurologist’s nurse practitioner (who is wonderful!) explained that the leg weakness and inability to use it, along with his increasing bladder and bowel incontinence were signs of this. She wrote an urgent referral for an MRI of the neck and told me to call on Friday if I haven’t heard from their office. 

At this point, I still had no idea what this was and she said with this degeneration Robert could become quadriplegic. The neurologist said he may need surgery. What? No. That can’t be. Do you really think he has this?  She explained that in Robert’s chart he had an MRI done in 2009 which showed the neck was compressed so she and the neurologist think things in that area have deteriorated.

I don’t recall this at all but that was early on in my care of Robert and there were a lot of things going on.  Unless I was told it was something serious and to worry about it, I let it slip out of my head.

Note to self: worry about everything – even things I don’t know to worry about! 

I could not even process this information.  This just does not seem real but there it is on the after visit summary: Cervical Disc Disease with Myelopathy.

I was so stunned with this diagnosis that I found myself laughing completely inappropriately when talking with my daughter. She and I had the same reaction: this is absurd. This cannot even be real. We were mortified by our fits of laughter but knew how awful, how terribly awful this new information was. I relayed the information to a friend and, again, found myself laughing.

I am losing my mind. 

This cannot be happening.  I still am hoping the MRI shows nothing and that all of these symptoms and behaviors are something else entirely. 

That is a possibility.

Is that hope or denial talking?

The doctor ordered lab work so is checking to see what else could be going on.  They don’t think his behavior is related to the new diagnosis but maybe it is.  I think I would be pretty cranky if all of a sudden I couldn’t walk.

In the meantime, I am searching for as much information about this as possible.  And fretting about what other things I don’t know about. 

Slaying the Medication Worry

Medication dispense times per day: 7

Four days of Robert's pills

Total number of pills to give per day: 25

Medications to keep filled on time: 9

The consequences of screwing this up: severe (increased and/or prolonged seizures, physically hurt from increased falls, increased memory and balance problems). 

Worst case scenario: I don’t even want to think about it.

My number one concern about Robert moving in is, by far, Robert’s medication.  (Keeping the freezer stocked with Rocky Road ice cream is a close second).

I was kind of freaking out about it but a friend asked me, “Don’t you think you can do better than New Home has?” 

Good point.

I, at least, won’t make arbitrary changes to his medication schedule so that it fits better with my schedule (a nurse at New Home actually did this when Robert first moved in there with awful consequences).    

Making sure I had Robert’s medications lined up properly and in time for move-in was one of the first items to tackle on my checklist.  My hope was that we could use the same pharmacy as New Home so the transition would be seamless.  I knew they delivered and thought that would be helpful. 

I called Robert’s current pharmacy only to learn they only work with care facilities.  I asked for advice on how to transfer the prescriptions to a new pharmacy and was told to get new prescriptions written by the doctor and fill them at the new pharmacy.

I had already previously filled prescriptions for Robert at a pharmacy near our house which is a familiar pharmacy since my husband uses it.  This was very helpful as they already had Robert in their system with all of his insurance information.

While simultaneously plowing through the other items on the move-in checklist, I called his doctors, New Home and our new pharmacy and asked for information on how to seamlessly transfer his medications.  

With each call, I got a new piece of information. 

Have his GP write brand new prescription orders.

Have his GP and neurologist write new prescription orders.

The doctors can call the pharmacy with the orders and cut out the “paper” step.

Medications were confirmed with each doctor.

After a few days, there was a follow up call from neurology about the brand name prescriptions Robert is supposed to have.   

In the meantime, I called New Home to ask what medications they would still have and how much would be sent with Robert when he moved out.  I wanted to be sure I had a couple of weeks of medication in case the pharmacy couldn’t fill the order immediately.  They assured me I would have at least two weeks of some medications and one month supply of some others.  They sent me a detailed list of what medications and how many I would have for Robert. 

Call me crazy, but I was doubtful.

The pharmacy called last week.  Medications were ready for pick up!

I was excited but this didn’t sound right.  It is 10 days before Robert moves in and they already have prescriptions ready?

I went to the pharmacy and, sure enough, three of his medications were ready.  One was eye drops which, of course, doesn’t cause me any concern whether I have those or not but the other two were seizure medications. 

One of the medications they had filled was the generic version and, after being questioned about why I “preferred” non-generic, I explained it was not a preference at all.  Robert’s neurologist deemed it medically necessary for him to have the brand name only.  The clerk was extremely curious about Robert’s seizures and epilepsy so I took the opportunity to educate him about it and could tell the crowd of people behind me were listening and learning too. 

Either that or they were wishing I’d stop being picky about the medications and holding up the line.

I left the generic medication at the pharmacy for the pharmacist to get clarification from the neurologist.  I only had the Depakote and eye drops but it felt wonderful to bring home the medications!  Before putting them in the cupboard my husband had cleared out for just this purpose, I checked the Depakote bottle and peeked inside. 

Uh oh.  These pills are grey, not pink.

I looked at the label expecting it to say “Depakote” but it had an “ER” added to it. 

I did a quick search on Google and found that ER is sometimes mistaken for DR but these are not interchangeable.  After calling New Home to verify Robert gets the “DR” version and not the “ER” version, I called the pharmacy back. 

The clerk who answered the phone told me there wasn’t a difference.  I politely but firmly told her there was.  

She put me on hold. 

She quickly came back on the phone and told me they would have the correct prescription ready in twenty minutes and asked if any had been taken yet.  Nope, that’s why I’m doing this early.

Working out the bugs without the nasty consequences.

The Depakote was figured out and the next day, other medication was filled with the brand name (Klonopin). I talked to the pharmacy about when the others would be ready.  I jotted down the refill dates on my nifty spreadsheet that I created for the medications (yes, I said “nifty”).  A friend sent me the spreadsheet she uses for her husband’s medications and I added a few columns to mine. 

Next up: figuring out how to give Day Program the medications they give Robert through the week. I assumed they didn’t want his pills in a baggie.

The pharmacy told me they would be able to give me a bottle with a medication label and I can fill it with the amount of meds Day Program needs from the monthly supply I get from the pharmacy. Works for me. 

For the house, my plan is to put one week of Robert’s medications into a multi-day pill container.  He takes so many, it’s actually going to take two large containers to fit them all.  Hubby gave me an idea of how to organize them which works perfectly (the row of 7 days will equal the 7 medication times per day).  Each row will be for one full day.  I labeled them with the medication times so no matter who is giving Robert his meds, the days and times are clearly labeled. (Clearly may be overstating it since my handwriting is awful). 

I am feeling much more in control of the medications and have much less worry about it. 

Slaying the medication worry:  Priceless