I’ve Been Thinking… Tony Thomopoulos Shares His Story of the ‘Road Less Traveled’ As a Male Caregiver
I humbly realize that my story is not an unusual one and that millions have gone through — and will continue to go through — this journey. But I am sharing my perspective at the urging of a dear friend. She insisted I tell my story of life as a male caregiver, knowing that it could be of service to anyone going through this experience, regardless of the disease their loved one faces.
All of our journeys differ, but the essence of caregiving carries with it a universality of lessons. With that in mind, I want to welcome you to my world of being a male caregiver.
It was just another ordinary day in late August 2016, a day with the usual and predictable series of events. My wife of 31 years and I were out doing some shopping when, like a lightning bolt, she said, “Please take me home. I have a terrible headache and am afraid I am going to collapse.”
This statement was unexpected from a woman who was, and is, a pillar of strength. Her professional name is Cristina Ferrare, and she is a former supermodel, actress, television host and personality, best-selling author, entrepreneur, wife, and mom. At that moment when she made that statement, I knew she was deeply hurting.
There was no time for fear or showing concern. Almost by rote, I called my friend Dr. Dev and told him I was taking Cristina to the emergency room of our local hospital and asked that he meet us there. He ordered an MRI and CAT scan and within an hour, he walked into the emergency cubby-hole where we were sitting with an ominous look on his face. He said that the test results indicated to him that Cristina had multiple myeloma. Cristina and I didn’t know what this meant, but we knew by looking into Dr. Dev’s eyes that it was bad news.
With tears in my eyes, I asked, “Is it cancer?”
“Yes, cancer of the blood,” he replied.
Cristina immediately said to the both of us, “Stop. No tears. How do we attack this? What do we do? Let’s get started.”
With a strong foundation in our faith, Cristina and I started that journey, and after a very difficult two-year period that involved an aggressive treatment of drugs and a stem-cell transplant, Cristina is now in remission and on a monthly maintenance program. That program includes monthly infusions and a form of chemo medication taken during the month. There is no clear answer on how long one stays on maintenance, however, the alternative is not acceptable.
While the first two years after her diagnosis presented us with a set of issues, this year—the first since her going into remission—has taken us on a new journey. It’s one that intensifies the role and endurance of the caregiver. Below are some lessons I’ve learned along this new path.
1) Your Life as You Knew It Is Not Over, Only Different
The first step of this journey is to start and accept the fact that the life you once knew is no longer sustainable while you are on this journey. No matter what the quality of your specific life was before, by becoming a caregiver, a part of your life is now altered. Examine it, absorb it, and try to get your arms around it.
Life is not a problem to be solved but a reality to be experienced. Your acknowledgment will not happen overnight. It is a process. Try not to get angry or resentful that you have to make these adjustments to your life. Instead, realize that this is part of your new reality.
Almost 2600 years ago, Buddha said, “Holding unto your anger is like grabbing a hot coal to throw at someone else. You always get burned first.”
Focus on the fact that there is no blame or punishment that caused this situation that you’re now in. It is what it is, so find a way to deal with it. Bitching and complaining is not going to make it go away. It will only create new issues that you don’t need added to your life.
Accept the fact that you are human, and with all good intentions, will still make mistakes. At moments, you will become resentful, not at your partner, but at the disease. Look at your life and start to make a list of things that are a part of your daily existence. Examine each one and determine which can be altered, minimized or added to.
Let’s start with some of the basic household routines, like grocery shopping, daily household maintenance, and keeping your medical insurance updated. You will also have to make doctors’ appointments, keep track of follow-up appointments, and fill out endless doctor’s forms for each new visit. Keep a chart of all the medications, when they should be taken, and the proper dosage. I found in the initial stages that I got a white board and listed the days, times, etc., that the medication should be taken. This gave my wife and I a means to normalize this process. Eventually, it became part of her daily routine and I didn’t have to be the constant reminder that she had to take her meds.
If you bowl, play golf, tennis, take long bike rides, or go fishing or hunting on the weekend, realize that you will not be able to be away for long periods of time as a caregiver. You should not give up any of these activities up, but instead, find a way to incorporate them into your new life schedule.
2) Accept the Different Sides Your Loved One May Show You
If you are to keep your sanity and preserve your relationship with the patient, (in this case, my wife), then you have to accept the fact that you are dealing with two different people. For me, this is one of the most difficult parts of the journey.
How do you separate the person in front of you into two different individuals? I visualize Dr. Jekyll and Mr. Hyde.
Mr. Hyde is the one you encounter in times of treatment, discomfort or under strong medication. It’s not the person you married or with whom you shared a lifetime. She can sometimes (who I am kidding, most of the time) become a monster. In the event my wife reads this, I would like to say a “loving monster.” However, truth be told, it is never loving.
By visualizing this version as Mr. Hyde, I realize the transformation her body is going through and I can empathize with the pain and anguish she is going through and how difficult it must be. For me, this brings everything into perspective and I can then attempt to be loving and sympathetic, rather than hostile and an adversary.
Can I be that way all the time? No, it’s not realistic. But I have found my ways to deal with those non-sympathetic moments. As a friend of mine told me, “The people who need the most love will ask for it in the most unloving ways.”
3) Don’t Keep the Illness a Secret. Reach Out to Friends and Acquaintances
Reaching out to others can be painful and stressful from a number of angles, especially for us guys. It’s not our first thought. “We can handle it,” we tell ourselves. We are the alpha-male. Move forward. No complaints.
However, I have learned if you tell your story in a truthful, clear manner without a hint of self-pity, then you will not believe the wonderful treasures you will discover.
Once we started to tell our story, then we heard from other friends who had friends or family members who had Multiple Myeloma. Their cutting-edge information and counsel broaden our awareness of the disease as well to incredible new scientific advances.
I cannot here in this article discuss in detail many of the other lessons I have learned, but here are some headlines and guidelines.
- Develop your own strategy.
- Valet park your ego.
- Embrace your feminine side.
- Don’t hold a pity party.
- Don’t try and win every argument. Just try and contain them.
- Be a research and patient advocate.
- Encourage support group participation
- Take some time for yourself.
- Create a patient (business) plan and schedule.
- Be a cheerleader to your loved one. Give hope.
Being a caregiver will present new challenges to your life, but it can also deepen and strengthen the relationship you have for your loved one and the respect you have for their strength. This new journey you will be on together will be like none you’ve ever faced before. But, if you stay strong and remain patient, then you can do this.
I leave you with one last thought in the words of Noah benShea, one of the world’s most beloved philosophers: “Being kind is more important than being right.”
Remember that even in the toughest moments, and you will be able to see them through.
Tony Thomopoulos is a motion picture and television executive.
This essay was featured in the May 27th edition of The Sunday Paper, Maria Shriver’s free weekly newsletter for people with passion and purpose. To get inspiring and informative content like this piece delivered straight to your inbox each Sunday morning, click here to subscribe.
READ MORE STORIES THAT MOVE HUMANITY FORWARD
READ MORE STORIES THAT MOVE HUMANITY FORWARD
SIGN UP FOR MARIA’S SUNDAY PAPER