Sep 29, 2021

For the Benzo Caregiver

Benzodiazepine-Induced Neurological Dysfunction (BIND) affects more than just the patients suffering from it. Although not in the same way or to the same extent, family members and friends — I’ll call caregivers — are impacted by it as well. As a caregiver, you may find yourself unexpectedly comforting your loved one, dealing with personality changes, talking through symptoms and ways to mitigate them, altering routines, and canceling plans. Along the way, you and the person going through BIND may feel the effects of isolation, loss of normalcy, and perhaps lack of income if he or she is unable to work.

I can tell you that patience, understanding, reassurance, and flexibility are all keys to helping someone go through the difficult journey of recovery. Although I can’t speak with any clinical expertise, I have learned some valuable lessons along the way that may be of help to those suffering from withdrawal symptoms and their friends and family members watching from the sidelines.

by Shana Foster (from the book Benzo Free)

You Are Not Alone

When I researched this, I came across some excellent resources, some of which I share below. But I did notice one thing which was consistent among most of them. Since they are usually written by the benzo patient, most of the articles focus on what you can do to help them. I’m a patient myself, and I understand this point-of-view quite well.

But what about you?

Please know, we do understand that this is hard for you too. And as I said in the tips below, we appreciate you, even if we don’t always say it.

The good news in all of this is that you are not alone. Far from it. Resources to support the caregiver may be hard to find, but they are there, and we have collected some of them for you to make things easier. We’ve also provided 10 Tips for the Caregiver which gives some key points to keep in mind during this difficult time.

We realize that this page is not anywhere near complete, and it will continue to grow as we collect more resources. And you can help. If you know of a resource which is not listed below, please tell us about it on our feedback page.

Thanks, D 🙂

D E Foster Easing Anxiety Founder

10 Tips for the Caregiver

1) Believe the Symptoms Are Real

This is the number one thing you can do for your loved one going through benzo withdrawal.

Most physical, emotional, and psychological symptoms of benzo withdrawal are invisible to others. For those on the outside, it’s easy to doubt whether the symptoms are real, imagined, or invented to solicit sympathy or get out of doing an unpleasant activity. This can be terribly frustrating to those suffering from it.

It’s bad enough to go through benzo withdrawal, but then for others to question its existence makes it much worse. The single best thing you can do for those going through BIND is to provide assurance that you believe them.

2) Create a Calm Environment

Since benzos are an anti-anxiety medication, it makes sense that people may experience heightened — even extreme — anxiety as they withdraw from the drug. At the same time, they may be managing a myriad of painful and debilitating physical symptoms, which only adds to their anxiety. That’s even more reason they need to surround themselves with calming influences. And you can help with that.

Start with the obvious, like creating a quiet haven that can be mostly free of interruptions. Allow this to be a special place where the patient can escape for a while. Declutter your home so there are fewer obstacles that can cause frustration. Turn on relaxing music. Watch light-hearted movies. Go for nature walks. Listen more. Talk less. Lighten the schedule. Plan ahead to avoid last-minute rushes.

Just don’t make the place so comfy that he or she won’t want to come out of it. When the symptoms subside, you may want to balance the isolation with some social experiences. We’ll cover that shortly.

3) Limit your Isolation

It’s understandable that benzo withdrawal (BIND) symptoms can force the biggest of extroverts into hiding. Will they feel up to socializing? What if their symptoms kick in during dinner? Will friends and family understand? Won’t it be embarrassing to have to leave the show half-way into the second act?

These fears are quite real and make it so tempting to stay home alone. But, it’s good to interact with others and maintain relationships when they can. And, if for no other reason, it’s good for them to think about something else besides their own symptoms for a while.

Encourage your loved one to socialize with friends and family when they can. Don’t push them, especially if it’s a bad symptom day. Keeping some semblance of a social life is important, but only if it’s beneficial for you and your patient. If it’s better to stay home, invite friends to come over. If the patient needs to excuse him or herself for a few minutes to lay down, your friends will understand.

This is as important for you as it for the one for which you are caring. Be careful of becoming too isolated.

4) Prepare for Potential Personality Changes — Both Good and Bad

Unfortunately, a common symptom of benzo withdrawal can be personality changes. The person you once knew, once counted on, is now different. Most of the time the changes are minor, but they can be significant enough to affect a relationship, whether it be that of a spouse, partner, parent, child, sibling, friend, or colleague.

Knowing that this change may happen, can go a long way towards dealing with it when it does. Try not to be judgmental during this time and understand the cause of this change. Often, they may return to the person they were prior to the drugs after withdrawal. And, even if they don’t, sometimes the changes are positive ones. Many people who have successfully withdrawn from benzos are more compassionate, better listeners, and less focused on trivial matters or material possessions.

Try and be understanding the best you can, and support them with these changes.

5) Budget for Potential Financial Changes

Some people go through BIND without missing work. For others, the symptoms are too intense to concentrate, and they need to step away from their jobs for a while. BIND symptoms are seemingly unpredictable and non-linear — symptoms don’t necessarily clear up and go away entirely, like when you recover from the common cold. They seem to appear, disappear, and come back again later — a pattern known as waves and windows. So, even if your loved one is managing his or her symptoms effectively today, that doesn’t necessarily mean that he or she won’t need to miss work when the next wave of symptoms comes around. Either way, it’s good to be prepared.

If the patient can’t work, the loss of a regular income can have a big impact on finances. It might help to reduce unnecessary costs and save money during the smoother sailing times in case rough waters lie ahead. If there’s any financial upside to BWS, it might be that your loved one spends less than usual because he or she doesn’t feel up to going out as often. Then again, more frequent doctor visits might cancel that gain.

6) Let Your Friends and Family Members Know What's Happening

Unfortunately, BIND is still relatively unknown to the general public. And since it’s virtually invisible to others and can last for so long, it’s easy to misunderstand the person going through it, doubt the condition is real, or even forget their symptoms exist. So, as long as the patient agrees, it’s good to let your trusted friends and family members know what’s happening and remind them of it periodically.

This isn’t like strep throat that goes away after a couple of weeks. When your friends and family are in the know, they tend to be much more understanding when you can’t attend an event or cancel or change plans at the last minute. It’s important for them to know that sometimes the physical or emotional symptoms of benzo withdrawal make it difficult or impossible for the patient to leave the house and/or be around other people.

7) Remember, It's the Condition, Not the Person

Remember the person behind the symptoms. This isn’t them — it’s their condition that’s causing them to be more emphatic, anxious, angry, irritable, complaining, forgetful, irritated, or withdrawn. When you think of it that way, it helps you to find the compassion you need to be around them.

This journey isn’t easy for the caregiver. It’s even harder for the patient.

8) Find Gratitude

It helps to remember that some others have much greater challenges and manage to not only get through the day but in some cases thrive. Despite the circumstances, somebody always has it worse than you in the world.

Together with your loved one, you can be grateful that you both can feed yourselves, walk through the grocery store, smell and taste the warm bread, and see the fresh buds on the crabapple tree outside the window. Practice looking for the positive each day. Even if it’s just 10 seconds between symptoms, every little bit helps.

9) We Appreciate You!!! — Even If We Don't Say It

People in benzo withdrawal are overwhelmed with themselves. It’s not intentional, it’s just a fact. So many symptoms, so many negative thoughts, so many struggles, so many fears and irritations that on some days, it’s near impossible to know what’s going on around us.

It’s important to remember that we appreciate you. We really do. Even if you don’t hear it enough. We know this is hard for you too, and you also didn’t sign up for this. We are grateful for all of your love, your time, your understanding, and we know we need you now more than ever..

10) And Most of All, Take Care of Yourself

As a caregiver, it’s easy to get sucked into the overwhelming vortex of symptoms, anxiety, and sense of helplessness that accompanies benzo withdrawal. It’s important to keep yourself in a healthy state of mind. After all, how effective can you be as a caregiver if you’re frazzled, depressed, and bitter?

Here are three things that can help maintain or regain some sanity:

Balance comfort with “me time.”

BIND can be overwhelming for the person going through it. When symptoms are at their worst, it’s easy to devote your entire day to comforting the patient. But, work, laundry, dishes, taking your daughter to a birthday party, picking up your son from practice, etc. still must be done. And, you need to take time for yourself amid it all.

Sometimes, your loved one might appreciate your presence 24/7, while other times he or she might prefer to be alone. Either way, it’s good to give the patient time and space to work through symptoms on his or her own. Find a balance that works for both of you.

Go for a change of scenery.

Cabin fever can set up quickly when you and your loved one spend all your time at home. It’s understandable — when you don’t feel good, there’s no place better than home. But after a while, it’s healthy to experience new sites, smells, and sounds. Start small, like a trip to the grocery store or walk around the neighborhood. On better days, try strolling around the mall or going out to eat. It’s amazing how getting away from the routine can help lift both of your spirits.

You Need Socialization Too

As we said above, your need for socialization is important too. It’s tempting to stay home with the patient instead of venturing out with friends and family members throughout the withdrawal process. After several months, you might find that your own relationships with others feel more distant. It’s important to maintain your own support system for times when you need a shoulder to cry on, distraction, or advice.

Remember, benzo withdrawal (BIND) can take a long time in some cases, but it is temporary. Life does get better when it starts to ease. It can be incredibly hard to have patience during this difficult time, and it’s important to find your own support system to ride out the storm.

Take care of yourself and remember we truly appreciate all that you do.

With love,

Shana and D 🙂

Key Resources for the Caregiver

Suicide Prevention

References

Ashton, C. Heather. “The Bridge Project, Bradford: Speech by Professor C Heather Ashton, DM FRCP: Annual Meeting, December 2011.” Benzo.org.uk. Accessed January 27, 2017. https://www.benzo.org.uk/chabradford.htm.
Foster, D E. Benzo Free: The World of Anti-Anxiety Drugs and the Reality of Withdrawal. Erie, Colorado: Denim Mountain Press, 2018. https://easinganxiety.com/book.

For Information Purposes Only – Not Medical Advice

All information presented on Easing Anxiety is for informational purposes only, and should never be considered medical or health advice. Withdrawal, tapering, or any change in dosage of benzodiazepines or any other prescription drugs should only be done under the direct supervision of a licensed physician.

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