BY MARIA DENEAU
Panic attacks. Anxiety. Fight or flight. Feeling stuck. Depression. Lack of self care. Denial.
These are all fallout behaviors experienced by long-term caregivers or family members who have dealt with Alzheimer’s disease. They also feel a lot like PTSD.
PTSD is usually thought of in the post-military combat space, but I think more and more people are now realizing that it can also show up after any traumatic experience. In the health care arena, I can’t think of a more apt place for PTSD to show its ugly face than in the caregiving world of Alzheimer’s disease. I like to call this related condition PTSDAD (Post Traumatic Stress Disorder from Alzheimer’s Disease) myself. I advocate with many who belong to this club, unfortunately, and I’ve seen firsthand how their lives are forever changed.
Let’s look at a clinical definition of PTSD, so that you can compare it with PTSDAD:
PTSD: Post-traumatic stress disorder (PTSD) is a mental health condition that’s triggered by a terrifying event — either experiencing it or witnessing it. Symptoms may include flashbacks, nightmares and severe anxiety, as well as uncontrollable thoughts about the event. Some changes in physical and emotional reactions are: Being easily startled or frightened. Always being on guard for danger. Self-destructive behavior, such as drinking too much or driving too fast. Trouble sleeping. Trouble concentrating. Irritability, angry outbursts or aggressive behavior. Overwhelming guilt or shame.
PTSDAD: See above.
Nailed it. Don’t you think?
I was asked by my new friend Lindsay at The Women’s Alzheimer’s Movement what “PTSDAD” feels like and why it occurs. I had to ponder this question carefully. My own personal fallout came after watching my mother suffer from Alzheimer’s disease. I wasn’t the primary caregiver, but I was helping my dad with everything from a distance and it was hard.
When I started having crying jags out of nowhere, my nurse friend Danielle suggested that I consider going to a therapist and/or asking my physician for an antidepressant. She also took my hand and told me that I was in the midst of situational depression.
BAM! It was the first time that someone had acknowledged my struggle and it hit me right in the face. This was my ugly “Aha” moment, if you will. My perspective on life shifted quickly as I watched my mom fade away. Life was fleeting. Life was in the “here and now”. The trauma itself was enough to invoke enlightenment. Enlightenment sounds like a pretty word with unicorns and rainbows, but it is anything but. It is dark, raw and isolating.
My opinion on why this syndrome (PTSDAD) is so detrimental in the Alzheimer’s/caregiving world is because the disease usually plays out over a very long period of time. Often, the person suffering from the disease is not even aware of the stress that their caregiver is experiencing. The caregiver just keeps going like an energizer bunny on crack!
Caregiver burnout is a real disorder, but what’s really horrifying is that sometimes caregivers actually end up dying before the person with Alzheimer’s disease does. The effects of their overwhelming stress and lack of attending to their own health needs catch up to them. Whoa.
Now that I am four years into life post-mom (15 years after diagnosis, mind you), I am recognizing this “syndrome” in other people that I know as well.
I’ve seen a 23-year-old cry for days after losing her loved one that year. I’ve witnessed ongoing despair from a granddaughter who lost her grandmother to Alzheimer’s after serving as her caregiver for many years. (She lost her dad on top of that and was also dealing with alcoholism and the end of her marriage at the same time. Needless to say, she had a difficult time moving forward, but today she is a strong voice for ending this disease!)
The driving force of anxiety and despair often throws caregivers down into the proverbial ditch. That’s why it’s important to me to put this condition into the spotlight, so that people all over the world who identify with these feelings don’t feel alone and can get the help that they need.
So what should you do if you know someone who is displaying PTSDAD, or if you are recognizing this syndrome in yourself? First, I applaud you for reading this article. You’re still reading, so that’s a positive step.
Next, I would have to say that your own recovery from PTSDAD depends on what you are experiencing. Do you have anxiety or depression? Is guilt a big factor? Are you feeling isolated, or just overwhelming sadness and grief? Only you know the answer, but recognizing what is happening to you is a big step. Maybe you become defensive when people express concern for you during this journey. Maybe you think “they just don’t understand.” Well, reach out to them. Talk to them. Then when you’re done, go ahead and talk some more. Don’t forget to talk! Did I mention talking?! Ya gotta start somewhere, so it might as well be with talking.
Another huge and important step to take is calling your doctor to let them know that you’ve been dealing with this as a caregiver or as a family member. Maybe you start with getting a physical or trying to focus on exercise and good nutrition. Pharmaceuticals or counseling are not always needed (although they surely helped me), but they are a few of many options available to you. The Alzheimer’s Association also has a national 24/7 hotline that you can call as well (800-272-3900). If your journey is still fresh and you just don’t feel like making a lot of effort, then calling the hotline is a great place to start, especially if you are exhausted and feeling overwhelmed.
If you’ve read my past articles, then you already know that I use humor as a weapon. It is my own personal “relief” and constant companion through the good and the bad of this thing called life. I have a lot of funny stories about Alzheimer’s from working in senior healthcare and from my own personal experiences with my mom and my advocate friends (you know who you are, people!). Humor is tough with this disease, but I know that it’s necessary to have in your toolbox as a caregiver.
In the end, just know that whatever you are experiencing is probably normal. Alzheimer’s disease is a giant truckload of awful and it is not something that anyone can go through alone without a lot of damage and baggage. Know that.
Until we can find a cure, or even a slowdown for Alzheimer’s disease, we all need to be aware of the effects that are caused by dealing with it as well. Check in on your friend whose mom has been newly diagnosed. If your own parent has been diagnosed, look in the mirror and ask yourself what YOU need. Oh, and don’t forget to talk about it! If you need to reach out to me, I am always available for anyone needing guidance and resources, or even if you just need a friend to talk to! I do it all of the time, and I’m good at it 🙂 It’s my THANG!
ABOUT THE AUTHOR:
Maria (Martini) Deneau is a native of Cincinnati, Ohio and is the only daughter of four children born to Bernard and Evelyn Martini. She is a graduate of The University of Cincinnati and is currently employed by Nutritional Medicinals in the Cincinnati/Dayton, OH, area. She also serves as an Alzheimer’s advocate for Ohio’s 8th Congressional District, as a Board Member for Fund Development at Senior Services of Kalamazoo County, and as a Networking Board Member for Professionals Focused on Aging in Kalamazoo, MI. She was also recognized by the state of Ohio Senate for Outstanding Achievement and exemplary service to the community and its youth while living in Cincinnati, Ohio.