This week’s post has a different tone from my usual posts. It is a reaction to the marketing campaign for the medication Rexulti.
For about a month, I’ve been hearing a commercial touting the benefits of using Rexulti to quell difficult behaviors that can come with Alzheimer’s dementia. The commercial appeals to the hardest part of caring for a loved one, doing everything you have to do while feeling everything you’re feeling in an effort to get family care-givers to consider using Rexulti. The commercial also supports why Rexulti is the most appropriate medication for managing behaviors associated with Alzheimer’s dementia because it’s the only anti-depressant with FDA approval to do so.
Hearing that commercial, specifically the disclaimer about possible side effects with family care-giver’s ears, has disturbed me greatly. What disturbs me most is that the commercial infers that the medication will make navigating Alzheimer’s dementia manageable by quelling behaviors like repetitive questioning and agitation without considering how potentially serious side effects will impact the daily life of the patient and family care-giver.
Describing the journey through Alzheimer’s dementia as emotionally difficult is an understatement. Those times when your loved one’s agitation spins out of control over something small or a loved one is making decisions that demonstrate poor judgment are frustrating and overwhelming and stressful. It’s hard to decide how to resolve what your loved one is experiencing when you’re not sure what is agitating her or him. It is also gut-wrenching to watch your loved one struggle with an upsetting experience and know that there’s very little you can do about it.
As a family care-giver, one of the most challenging roles one has to play is that of decision-maker. It’s a very difficult role that is amplified when one has to make medical decisions for a person who can no longer make complex decisions for herself or himself.
Each time I hear the Rexulti commercial, I’m reminded about the medical decisions I’ve had to make throughout our journey through Alzheimer’s dementia. The commercial makes me think back to an early medical decision I had to make, choosing a breast cancer treatment for mom. Every time I hear the Rexulti commercial, I can’t stop thinking about how I’d feel now had I made the decision to follow the initial doctor’s recommendation of using the proposed standard treatment protocol.
The first doctor we met, recommended that we follow a standard treatment protocol of mastectomy, chemotherapy, and radiation therapy. My immediate thoughts were that sounded like a lot to do to someone 84 years old. But not knowing anything about breast cancer and its treatment, I was dependent upon the doctor for guidance.
What challenged me to look for a different solution was the doctor’s inability to explain how the positive characteristic of her tumor would impact her treatment protocol. The treatment protocol the doctor was suggesting didn’t feel right. It didn’t fit her lifestyle so I knew I couldn’t choose it for her. That experience taught me that as her decision maker, I had to make decisions and take actions that were satisfying to both of us.
I share that story to encourage you to think about how using a medication like Rexulti will impact the lifestyle of your loved one and yourself. As a family care-giver to someone with Alzheimer’s dementia, I understand how behaviors like extreme agitation or uncooperativeness disrupt your daily life. Putting your loved one on an anti-depressant can be a useful strategy for making your loved one’s behaviors manageable. However, choosing an anti-depressant is a very personal decision. Therefore, I won’t be so arrogant or judgmental as to tell you which one to give your loved one. I will however, strongly encourage you to take a moment to think about how the medication you are considering will impact the lives and lifestyle of both you and your loved one.
As the family care-giver, you are more than just a Pez dispenser of care to your loved one. You are an integral part of the care relationship. Therefore, it’s extremely important that you consider how you feel about the decisions you make and actions you take. Be patient with yourself as you decide whether Rexulti or any medication is the best one for your loved one so that you can trust your decision and actions. No one knows your loved one and you better than you do. Having and using that knowledge is invaluable for making a medical decision and taking actions that will be satisfying to both of you.
The commercial encourages you to talk with your doctor about using Rexluti. If you are considering using Rexulti, I encourage you to expand your questions to include ones that ask for support in watching for possible side effects and addressing any side effects that may occur. Below are a few questions that you can ask your doctor as you decide whether the medication is best for your loved one.
Questions for doctors
How long will my loved one have to be on the medication before we notice changes in behavior?
In the clinical trials of Rexulti, how long were participants on the medication before researchers began noticing side effects?
Are we able to have a home care nurse to help monitor the impact of the medication?
Will my loved one be prescribed a glucose monitor to measure whether blood sugar in rising? If my loved one’s blood sugar begins to rise, will she/ he require additional medication? How will rising blood sugar impact her/his diet?
How will monitor potential rises in cholesterol? Will she/he have to be tested more often? If so, how often? Will her/his insurance cover additional testing?
Those are just a few questions that can be asked so be sure to take your time and think about everything you need to know before making a final decision. I encourage you to ask all the questions you have so that you can make the best possible decision for your loved one and yourself. It’s really important that you are comfortable with the answers you get so that you can decide whether Rexulti is appropriate for your loved one.
I’m also including a few questions to ask yourself to guide you in thinking about the impact Rexulti could have on the lives of you and your loved one.
Questions for yourself
If my loved one could make the decision about taking Rexulti, would she/he be comfortable with the risks associated with the medication?
Have I exhausted all other options for addressing my loved one’s difficult behaviors? Are the difficult behaviors severe enough to take the risks of Rexulti’s side effects?
What support will I need should my loved one experience a serious side effect? Where will I get that support?
The above questions are very difficult to answer. However, because no one knows your loved one and you better than you do, those questions can help you decide whether Rexulti will fit into your lifestyle.
As a family care-giver, making decisions and taking actions that are satisfying to both my mom and me came from identifying what I needed to continue caring for her. It took a while for me to learn to include my needs. But it helped me set the goal of not putting the would’ve, should’ve, could’ve regret rocks in my life backpack.
That life experience was the genesis for my motto: care-giving is what you do for your loved one; giving-care is what you do for both of you. My encouragement to you is to make decisions and take actions that will prevent putting regret rocks in your life backpack.
I’ll talk more about making decisions and taking actions that are satisfying to both of you in my next post. Thank you for taking time to read my post. Be well until next time.
Dr. Sheri L. Yarbrough is an author, caregiver, and founder of Praxis Senior Care-Giving Solutions, a consulting business that provides care-givers with practical and easily implemented strategies that can be tailored to meet their individual care needs.
View Dr. Yarbrough's weekly blog on all things caregiving from a caregiver's perspective.