This Thing Called Hope

We are now done with Week 2 of Take 2 of the new medication.  We were this close to not making it through Week 1 but we all pushed through and decided to give this new medication more time.

Getting a nice card in the mail helped get us through Week 1! 

Richard and I were more prepared this time going into the new medication at the lower dose than we used before.  We knew what to watch for: excessive sleepiness, trouble walking and extreme irritability.  I was hoping Robert could tolerate the lower dose without those side-effects and I was also hopeful we would see a reduction in seizures like we did at the stronger dose.

I am nothing if not hopeful.

I wanted to wait to start the lower dose of the new medication until Robert’s cough subsided but his cough is fairly constant and just not going away. I finally started the medication at the end of a day in which Robert had five seizures (one being four minutes long).  It would have been nice to have Robert feeling one hundred percent so I could be certain any behavior or mobility changes were due to the new medication but the excessive seizures were the tipping point for me and I decided we couldn’t wait any longer.

Week 1 was difficult.  Robert was so tired, most days he couldn’t even manage dressing himself.  He was having difficulty walking and had screamed at his afternoon driver that he was lying about a story the driver was telling Richard. Robert was sometimes slurring his words and got so mad at me he threatened to call the police and have me arrested.

He also still had his nighttime cough and threw up a few times during these coughing fits.

It was not a fun week.   

Why would I even consider continuing the medication into Week 2 after that difficult first week?  Because we saw a decrease in his seizures.  The seizures didn’t stop completely like they did on the higher dose but they definitely decreased.  I was hopeful his body would adjust to the medications and that eventually he wouldn’t have the mobility and behavioral side-effects and we could continue to see a reduction in the seizures.

I even hoped once he adjusted we could increase the medication to the point of it stopping his seizures without further side-effects. Could this be the final piece to the intricate puzzle of his medications to stop his seizures?

Hope keeps me going but I find myself tempering it with logic and reality; spreadsheets and logs. Sometimes I wonder if I can ever allow myself to experience unencumbered hope.

The jury is still out on Week 2.  He continues to have trouble walking.  His right foot drags so much, he even has difficulty making it move at all – sometimes it seems “stuck” and he just can’t get it to move forward.  He is still irritable but that seems to be lessening – he hasn’t threatened to have me arrested but he did get so angry at Richard that he predicted a not-so-pleasant-yet-extremely warm place where Richard was going to end up.  

His seizures are still fewer than they were before using this medication.  He went a couple of days without any seizures and then has had one short one each day.  There haven’t been any cluster seizures for ten days and for that, I am extremely grateful.  Before this medication he was having cluster seizures several times a week.

As of yesterday, I thought he was getting used to the medication. He was alert, less irritable and back to his joking-around self. Today, he has slept most of the day (and that includes dozing while eating Easter Brunch) but that could be because he has become accustomed to sleeping until noon on the weekends or because the coughing at night is interrupting his sleep. 

The neurologist’s plan calls for increasing the dose after two weeks.  I’m not prepared to do that just yet.  I talked it over with Richard and we agree that keeping Robert on the same dose for another week is the best idea.  The seizures have decreased and the mobility and behavior issues might be turning a corner.  I don’t want to increase the dose just yet but I am not ready to give up on it either. 

I asked Robert (the worst self-reporter in the history of self-reporting) how he was feeling on the medication and no one will be surprised by his response:

“I feel excellent.” 

Going into Week 3, Robert feels excellent and I feel cautiously hopeful about the medication yet concerned about the continued cough and mobility issues. 

I will continue to use the seizure, vitals and behavior logs to logically determine if Robert should continue on this medication or if, perhaps, he has another bout of bronchitis or pneumonia working on him.

The logs make me feel a bit more in control of a very fluid and quite unpredictable situation, but hope lets me believe in the magic of excellent.

Bring on Week 3! 

When Doctors Don’t Agree

It is such a dilemma for me when doctors suggest new medications for Robert.  My first inclination, after careful thought and consideration, is:

ABSOLUTELY NO WAY!

See how reasonable I am? 

It is true that Robert has tried a variety of medications throughout his life.  Some have helped and some have caused horrific side effects (from behavior problems and depression when he was a teenager to causing balance problems and falls). 

Before I took over Robert’s care, Robert was willing to try any medication offered by the doctors. He even participated in clinical research which studied medications not yet approved by the FDA. 

By the time I took over his care which was almost five years ago (can you believe it’s been that long?), Robert was on a strict regimen of medications and had been for quite some time. His doctor and I were concerned he was not remembering to take his medications when he was supposed to which was one part of why I felt he could no longer live on his own. 

A few years ago, his new neurologist suggested trying a new medication. Unfortunately, this was met with disastrous effects, including a trip to the hospital because of a bad fall and a scolding by my dad and Other Brother about how I should never change his medication.

Oh good.  I get to take care of Robert, make difficult decisions about his care and then be judged when those decisions don’t turn out as planned.  Okay, I get it.

But, I’m over that difficult incident.  (Obviously.)

Robert was immediately taken off of that new medication and I have rejected every suggestion of a new anti-seizure medication since then.  

However, occasionally, Robert’s doctors will have to add a new pill to his regimen that is not an anti-seizure medication (thyroid medication, for instance). Robert is on Depakote (500 mg/3 times a day) and this can cause his ammonia and valproic acid levels to increase which can make him tired and foggy headed.  The neurologist added Levocarnitine to his litany of medications in order to keep these levels down.

Robert also sees a Memory Specialist who would like him to start taking Lactulose in order to get the ammonia levels down even more. He suggested this a year ago and, once he explained the medication to me, I balked.

Robert was living at New Home at the time and Lactulose basically flushes everything out of the system, including anti-seizure medication.  The timing of giving the Lactulose is critical.  I had zero faith that New Home could adequately manage this new medication.  I felt Robert was at risk of great harm if I started him on it.

I talked to the regular neurologist about my concerns and he agreed.  Do not give Robert Lactulose.

This past June, Robert saw the Memory Specialist again who was not very happy that we hadn’t started him on the Lactulose.  I explained my reasoning and he seemed to understand that I didn’t just go rogue on him. 

However, since Robert was living with us, he thought we would be able to better manage the medication and said he should start taking it. 

I was still not happy about adding this medication.  Selfishly, part of my reluctance was because of what it causes: smelly poop.  After Robert’s April hospital stay, he became occasionally incontinent with his bowels. 

Call me crazy but I was not that excited about trying a new medication that would make more of a mess. 

We checked his ammonia levels over the summer and after his September hospital stay and they were on the upswing. His primary care physician thought he should start the Lactulose (I had shared my reluctance with him as well.)

Oh fine. I agreed to try it – Robert’s incontinence was worse after this latest hospital stay so how much worse could it get? 

I was afraid to find out.

We tried it out on a weekend because I wanted to see how fast it worked and how we could incorporate the new medication without impacting his day at his Day Program. I don’t want him to have embarrassing accidents.

Much to my relief, the medication did not make things worse.  (Not much worse, anyway.)

To my knowledge, the Lactulose has not impacted his Day Program activities or caused Robert any embarrassment. 

Robert had an appointment with his usual neurologist on Tuesday so I told him we had finally started the Lactulose. 

He proceeded to tell me Robert didn’t need it. 

Are you kidding me?

After working myself up to start this new medication and finding the right time to do it (no one was in the hospital, it was on a weekend where we were home and Robert was feeling halfway decent), I am now told it isn’t necessary.

I had to ask: What about the other neurologist?  He told us to start using it.

“It’s not necessary. His ammonia levels are not terrible.” 

I have enough trouble adding new medications without the doctors disagreeing about it!

Get it together people.

This neurologist increased one of Robert’s regular medications (his Zonegran) and started talking about new medications Robert hasn’t been on before. Apparently, if the increase in the Zonegran doesn’t decrease Robert’s seizures (which are close to 30 every month), then he wants to try a new medication.

Increase the Zonegran and stop the Lactulose. 

At this point, I kind of hate to stop the Lactulose because I’m curious if it actually brings down Robert’s ammonia levels and if that would affect any behavior (alertness, for instance). I already got myself worked up to use it, started using it and am managing its effects just fine.

I don’t think I want to stop it just yet.

My compromise is to continue with the Lactulose for a month and get the ammonia levels checked at that time. Then, I will stop the Lactulose but I will at least be able to tell Memory Specialist that we tried it and it worked (or didn’t). 

In the meantime, I will hope the increased Zonegran will decrease Robert’s seizures.  I really don’t want to have to make another decision about new medications. It’s exhausting! 

As much as I hope for fewer seizures and no more medication changes, I know the reality is that there will always be decisions about medications to be made. 

It would just help out a little if the doctors could agree about these things!

Have you had the experience of different doctors treating your caree and giving conflicting advice?  How did you handle that?

What?! Wait! I Have to do Math!?

My biggest concern about moving Robert in with us was the responsibility of his medications.  Will I be able to keep them in stock? Will I remember to give them to him at the right time? Will I be able to organize his refills and keep the Day Program stocked with Robert’s mid-day medications as well?

Robert's Spreadsheet of medications

I worried because if Robert doesn’t get his meds on time or if he misses a dose, the consequences are extreme (increased seizures which result in increased falls which lead to injuries).    

The concern I didn’t think about: I’d have to do math!  Yikes!

Don’t get me wrong – I can do math.  I have a college degree although it is in psychology, not math.  (Other Brother, on the “other” hand, does have a degree in math from a prestigious university.) 

Other Brother is also an actuary and partner in a multi-national actuarial firm.  When we were kids, our dad would randomly give us math problems and Other Brother was always the first one with the correct answer.  (I could eventually answer the question but it took me a while; Robert was usually chasing bugs or frogs and didn’t pay attention long enough to answer).   

So I can do math, I just have to r-e-a-l-l-y think about it when I’m doing it.

I created a medication spreadsheet and was grateful to other caregivers for giving me advice on what information to include.  During move-out day, I carefully counted the medications Old New Home gave me.  Once home, I put this information on my spreadsheet. 

I counted how many days I had left with the medication they transferred to me.  I counted the number of days left until the refill date the new pharmacy had given me.  There are nine medications to keep track of, each one with a different number of pills to be given at various times of the day.  To complicate things, the pharmacy changed one medication from a 1 mg dose to a 2 mg dose (which doesn’t matter since he gets that medication in 2 mg increments but it does mean more math for me).

My plan is to fill his medication containers each Saturday with one week of pills.  The first time I did it, I needed complete silence in the house for concentration and counted, checked, re-checked and then updated my spreadsheet.  I added, subtracted, multiplied, wrote numbers on scraps of paper, consulted the spreadsheet and threw in some calculus and geometry for good measure (okay, I kid about that last part). 

I checked everything again just in case.

It took me close to an hour (in part because it’s impossible to keep this household full of dogs, cats, a husband and Robert quiet for very long). 

This past Saturday went quicker.  The math is getting easier and I’m feeling better about the medication issues (and I don’t insist on quiet).

There are still a few bugs to be worked out – one of Robert’s medications couldn’t be filled at our pharmacy because, for whatever reason, Old New Home had filled it at their pharmacy.  (Um, heads up to Old New Home: Robert doesn’t live there any longer!). 

I checked with Day Program and they have enough medication to last at least two weeks.

Robert doesn’t have his emergency medication (Ativan) because Old New Home realized it was expired so they didn’t give it to me.  Robert sees his neurologist tomorrow so I’ll get a new prescription for that.

Thankfully, my worst fears have not been realized but at least I was prepared for them.  Preparation and asking for help from others who have done this for a while were essential to being ready. 

That and having a calculator . . . 

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