My Education Begins

This journey has been a real learning experience for me. The schooling on the topics of Paxil (paroxetine), antidepressants and anti-anxiety medications, anticholinergic drugs, and memory loss began when I accompanied my mom to an appointment with her doctor in the final days of 2009.

She made the appointment because she was concerned about her memory. She was able to get in the morning of Christmas Eve and I was free to go with her. In the course of the appointment I saw the name of the medication she was taking - paroxetine. I asked the doctor what it was for. He said it was for anxiety and that she had been experiencing some real anxiety when it was prescribed. I was caught by surprise. I had never noticed any anxiety beyond what is normal in life. My dad had never said anything about it.

About a week later I had an appointment with my doctor. When I asked him some questions about Paxil/paroxetine, he said he rarely prescribes it because of the side effects and that coming off of it can be difficult. That conversation led me to a Google search on Paxil side effects. Interestingly one of the side effects that kept coming up was memory loss. In posts on several sites people commented on their frustration with memory loss while on the medication. Comments responding to some of these posts tried to tell the writers that their memory loss was probably due to their depression rather than the medication. I noticed however that those who were able to stop taking the Paxil had their memory improve.

A couple months later, I took my mom to see my doctor. We decided to try weaning her off of the paroxetine. At the time she was taking 10mg a day. The doctor recommended taking 10 mg every other day for 2 weeks and then stopping. She followed the every other day regimen for about three weeks. I reminded her that she was supposed to stop taking it. She did for a short time, but went back on it after an evening of having difficulty playing a card game with friends. After learning she was taking it again, I encouraged her to stop so that we could really get a handle on whether or not her memory would improve. She did.

I was expecting and watching for withdrawal symptoms like nausea so when other problems came up I didn't make the connection. Insomnia, depression, anxiety, loss of appetite, and even more memory issues made her life unbearable. I know that many people reading this will say, "See, she did need to be on an antidepressant." But this was not a person going back to symptoms she had before being prescribed with the medication. She had never been like this before - not even close. Needless to say she had to go back on this nasty medication.

When all of this happened, it led my sister to a book, Prozac Backlash by Joseph Glenmullen, M.D.,  that helped us understand what was really going on. The book talked about the way SSRI (Selective Seratonin Reuptake Inhibitors) work and why so many people have difficult withdrawal when discontinuing their use. What Mom was experiencing was not a return of symptoms but terrible withdrawal.

One of the things we've learned through our expereinces is that most doctors don't understand the withdrawal that goes along with stopping SSRI medications. (There is so much information and so many new medical findings out there that they can't be expected to know everything. That's one reason I'm writing this blog. I want doctors, and maybe even more importantly lay people, to know the things we didn't know going into this.) Doctors don't understand how slowly people need to wean from these drugs. They don't know that because of the way the medications work, an every other day regimen is not the way to go.

The list of things we've learned is long.

• How drug companies get medications approved
• How drug companies market medications
• That many drugs have anticholinergic effects that cause memory loss (Paxil is one of them)
• How easily doctors prescribe anti-anxiety medications

                                               ...to name a few

But, these topics will have to be fodder for future posts.

Always Pray and Don't Give Up

"Then Jesus told his disciples this parable to show them that they should always pray and not give up."
Luke 18:1

There it is again...persistent prayer. It has come up quite often in my Bible reading and devotions lately.

Every time I've read or heard that theme in these past few weeks, I think of the prayers I've sent heavenward on my Mom's behalf. I'll admit that I've entertained thoughts of giving up. Maybe this is just the way it will be - a slow but steady decline until Mom meets Jesus.

Deep down inside I don't think that's the case. Another theme that keeps appearing in my Bible reading time is that with God all things are possible. I've learned over the years that repetions like this are God's means of communicating with us in a very personal way.

In the parable, a widow keeps coming to a judge seeking justice. The judge ignores her requests for some time. But finally he decides to obtain justice for her, not because he thinks the woman deserves it, but because he's tired of being bothered with her pleas.

Jesus applies the parable saying, "Listen to what the unjust judge says. And will not God bring about justice for his chosen ones, who cry out to him day and night? Will he keep putting them off?" Luke 18:6-7

The answer is a resounding "No!"

Jane L. Fryar writes in Today's Light:

          Think of it! You are His chosen one in Christ Jesus. Your heavenly Father himself
          will hear your case, not some uncaring stranger. He's invited, even commanded, you
          to petition His court. Go ahead; cry out to Him day and night! Bring your needs, your
          hurts, your sins to Him. He will hear. He will help. He will forgive.  
         (Today's Light, Vol. 6, No. 4, Concordia Publishing House, St. Louis, MO, p.15)

So, I will keep praying. I will keep asking my heavenly Father for a way for Mom to be released from the shackles of Paxil. And I will trust that he will do what is best in his perfect time.

The First Signs

"He hears what he wants to hear."

"He has selective hearing."

I've heard quite a few women make these kinds of remarks, especially about their spouses. My mom was no exception. If Dad was engrossed in one of his favorite sports telecasts, she was probably right. However...

Two or three years before my dad died, when Mom would complain about Dad's selective hearing, I found myself thinking But sometimes you're worse than he is. I remember feeling frustration when I'd be telling her something and before long I'd realize that she wasn't listening.  It really got to me when she'd ask me a question, and while I was answering it she'd walk away. With annoyance I'd say to myself, "I can't believe you're being so rude. Why did you ask if you weren't going to listen to the answer?" Sometimes these conversations took place while we were preparing a meal so I shoved my irritation aside thinking Mom was just preoccupied with the tasks at hand.

Years later, after doing research into anticholinergic medications it hit me. It wasn't rudeness at all. It was a side effect of the Paxil (Paroxetine). The timing was right. She hadn't always been that way. These behaviors were something new. Anticholinergic drugs can cause inattentiveness and distractibility - among a host of other side effects of which Mom has experienced quite a few.

If we had only known then what we know now, things could be different. When these signs first appeared, Mom maybe could have gotten weaned off the Paxil more easily since she hadn't been on it all that long. Her memory and cognitive abilities may not have deteriorated to where they are now.

We can't undo the past. We need to focus on the present and plan for the future. That will involve more research and above all, more prayer. I haven't given up hope that God will provide a way for Mom to be set free from the shackles of Paxil.

The Journey Begins

"When I get big and you get little..."

About 20 years ago I heard my nephew say this to his parents.

And I thought I was the only child who thought it worked that way - that as time went on the parent and child roles would be reversed. Little did I know then how much truth there was in that line of thinking. No, parents don't shrink down to the size my nephew was when he spoke those words. But, I'm now seeing how much the roles of parents and children do reverse as parents age. I imagine that this is especially true when the parent is experiencing memory loss as is the case with my mom.

Now I'm the one making the appointments. I'm the one doing the chauffering. I'm the one offering advice on diet and keeping healthy. I'm the one giving the reminders to take a bath. I'm the one keeping everything on the calendar straight.

The sad thing is, I believe my mom's memory loss could have been avoided. From the research I've done, I am quite certain that her memory issues are a side effect of the Paxil she has been on for about 8 years now. With this blog I'm hoping to chronicle some of the events in our journey and make people aware of the risks involved with this and other medications. I'm sure if Mom had known 8 years ago where life on Paxil was going to take her, she would have found other ways to deal with her sleeping difficulties and low blood sugar issues.

Do those conditions cause you wonder Why was someone with low blood sugar and sleeping issues put on Paxil? When I found out what Paxil was, I wondered that myself. I distinctly remember visiting my parents some months after they had moved to a new community. They had recently had their first appoinments with their new doctor. Mom was telling me about her doctor visit and said, "He gave me some medicine to help me sleep better and to help with my low blood sugar." I didn't question it at the time, but in hindsight I sure wish I had. We have tried twice to wean her off of the medication. But Paxil is notorious for being extremely difficult to discontinue. I keep praying that we will find a way to wean her off of it.

So that's where this journey of ours started. Where will it end? Time will tell. In the meatime, we keep our eyes on Jesus who is carrying us through and guiding our steps along the way. He has his reasons for allowing my mom to go through this. Maybe it is so we can reach out to others. If her story helps just one person avoid the challenges she had faced, it will be worth it.