Category: Family
Ask Jennifer: How Did You Hide Your Worry About Your Father’s Mesothelioma?
If I had a superpower, it would be worrying. You name it, I worry about it. As much as I try to stop, it’s something that just seems impossible to me; however, with a lot of praying, it’s starting to get better.
Even so, when my Dad started to fall ill, I began to panic. I played out every scenario of what could be wrong, how we would handle it, and ultimately what the happy outcome would be. (Even though I worry, I’m an optimist… odd juxtaposition, I know.) One thing that I never thought of was mesothelioma. I knew next to nothing about it and thought it was something that you just saw on commercials. There was no way it was happening to my father.
People sometimes ask me how I managed my worrying tendencies during these trying times. The answer is, I didn’t. I tried my best to hide it, especially in front of Dad, but I think that everyone saw through my act. Even at the moments where my strength may have appeared to peak, I was completely broken inside. I don’t know how I made it through any of it; I take that back, I only made it through because of God.
A lot of the time, I tried to put on a happy face and pretend that I wasn’t concerned. After we received good news, we celebrated, and I was absolutely thrilled each time, but in the back of my mind, that old fear always seemed to creep in. I thanked God for the joy, but wondered when the next wave of sadness would begin.
Still today, even though we’re approaching the four year anniversary of his passing, there is still sadness in my heart from his loss. It’s true that I am extraordinarily happy with my husband and daughter, and with my family who loves me unconditionally, but there is still a piece missing that could make that happiness even more amplified. I am constantly questioning what Dad would be doing today if he were here, or what would he think about certain situations. I always want to send him a picture of my child or tell him the funny thing she said, just to hear his beautiful laugh.
A piece of me is missing without Dad, but what is also missing is the worry I carried for him. I am certain that he is in Heaven where there is no worry or sickness. He is free from this awful disease. I know that he is looking down on me, and that he doesn’t want me to worry about him anymore; he is with God, laughing and smiling each and every second.
Caring for A Mesothelioma Caregiver
One of the most difficult things in life is to see someone you love suffer. Patients who are diagnosed with malignant mesothelioma, or any cancer or life threatening illness, have a range of emotional ups and downs on their journey. The family member, spouse, partner or friend, that supports them also deals with an enormous emotional burden.
According to a statistic from AARP, approximately 44 million Americans provide 37 billion hours of care for their loved ones, whether it be sick, older or disabled people. The economic value of the services that family caregivers provide is estimated at approximately $350 billion annually.
This past week, a mesothelioma caregiver was sharing her story with me. She had notebooks full of the course of her husband’s mesothelioma journey. From his diagnosis to present day she had chronicled all the events, tests, procedures and surgeries that he had been through. She was encouraging other family members to keep records as she often has to advocate for her husband. She is able to do so by referring to her notebooks to remember dates and times and the corresponding discussions. It was the wife trying to get control of an uncontrollable situation.
As the conversation progressed, we started talking about how she was handling being a caregiver. It has been difficult to watch as her husband has lost weight, been uncomfortable, depressed, and anxious. It has affected her physical and mental health. As important as her job as her husband’s caregiver is, she needed to start to pay attention to her own health.
There have been studies about caregivers’ health. Caregivers have increased physical ailments as compared to non-caregivers. Caregivers also have higher levels of stress, depression, emotional problems, and cognitive problems. Another study found that strained caregivers had a 63 percent greater chance of death within four years as compared to non-caregivers.
Caregiving has many positive aspects. It can strengthen the bond between the patient and the caregiver. Many caregivers feel it is one of the most rewarding experiences that they have in their lives.
What can you do for a caregiver? The gift of time, stay with the patient for a few hours. Encourage the caregiver to go out, take a walk, see a movie, anything that they enjoy. Give the caregiver support by listening to their journey, experiences, and fears. Caregiving is a difficult, rewarding job- made easier with support!
Our Mesothelioma “Aha” Moments
From time to time, there are moments in your life where things just click. Everything falls into place and makes sense, for good or for naught. Throughout my family’s journey with mesothelioma, we all had these “Aha!” moments.
The first of these moments came from my Dad himself. We were visiting the Flight 93 Memorial together as a family. While we were walking, he had to stop because he couldn’t catch his breath. He had been having some trouble for a few months, but he later told me that this was the moment he realized that something was seriously wrong.
For me, this moment of clarity came after my father’s diagnosis when we were directed to NYU Langone for surgery by a complete stranger. I realized that this was the answer to my prayers and that God was truly in control, something I always believed, but saw in complete transparency that day.
There were many times when we thought we understood what was going on. Dad’s scans were clear for a while, so we thought that the fight was over. He participated in a clinical trial, so we assumed that everything was working perfectly. Then, when the cancer returned, we thought we knew what to expect. We were utterly wrong.
Radiation took a completely different toll on my father’s body than the chemotherapy. Ultimately, it was complications from treatment that took his life; he was cancer free when he took his last breath. We didn’t understand this. If he was “cured”, why would there be a problem? This lead to another “Aha” moment.
We realized, and more importantly, accepted, after some time, that God’s plan is perfect. The moment that Dad passed away, he was in the arms of angels and free of pain and sickness. All of this was God’s plan, and He always seems to get it just right.
Are You Hovering Over Your Mesothelioma Loved One?
Picture it… you’re sitting quietly in the room while your loved one sleeps peacefully. You start thinking that they might be a little cold, or that their breathing seems like it might be a bit off. You walk over to them, listening, carrying a blanket. Next thing you know, they’re looking at you, wondering what in the world is going on!
I am a “hoverer.” There, I admit it! When someone I care about is sick or hurt, all I want to do is watch them to make sure they’re alright. I constantly hound them with questions of, “Do you need anything? Are you ok? Should I call the doctor? Are you sure you’re alright?” And, just for good measure, “Do you promise you’re ok?”
When my father was battling mesothelioma, my hovering tendencies were heightened. The person I loved so much was facing something that we had never experienced. I didn’t know what to do, so I did what I do best. I asked a million questions every day. I was constantly calling to check in when I wasn’t there. I’m sure I drove my Dad up a wall.
But then, on the other hand, Dad knew me so well. He knew that I was spending my time worrying and wanting to help in any way I could. These are just ways that I show how much I care, and it’s not something that I can change. Dad took my hovering ways in stride, appreciating that I was there and thanking me for my concern. He answered all my questions patiently, always assuring me that he was fine.
I am grateful that my father was someone who had that patience, the patience of a saint if you ask me! Others may not be in the same mindset. Even when I tried not to take over Dad, I still ended up doing just that. It’s tough to find a balance. In this case, I think the balance has to be between the patient and the caregiver. Cultivate your relationship together and see what works for both of you. Your loved ones will let you know what they need… even if that turns out to be some space!
Daughter of Mesothelioma Victim Holds Memories
A song. A simple tune that other passers-by don’t even notice. A smell, wafting on the breeze. A place, so full of meaning, that sharing it with other people seems like you’re telling a secret. These are all triggers for me; triggers of beautiful memories of my father. Knowing that I don’t have the chance to make new ones with him, makes me protective and possessive of the ones I hold so close to my heart.
Dad loved music and he was a beautiful singer. Even though he played with his bluegrass band, most of my memories of him singing were a bit different. Yes, he always sang me “You Are My Sunshine,” but there was more to it than that. I remember during our infamous Saturday morning adventures when he would sing along with me to the radio when REM or No Doubt was playing. I remember the time he went to an NSYNC concert with me, just because.
Along with music, my father was a lover of food. It didn’t have to be a delicacy, in fact, he would prefer it not to be. The smell of no-bake cookies reminds me of the first time we “baked” together, unsuccessfully, may I add. How we managed to mess them up, I’ll never know. The fun was in the experience.
Every time I smell a beautiful fall breeze, it takes me back to nights spent with him in the yard at our home, playing outside. Volleyball became a specialty, and during the last set of the night, we would both agree that we would go inside once the ball hit the ground. This led to bouts of hilarious laughter as we would run around, doing everything we could to make the evening last just a bit longer.
Dad and I shared so many memories in various places. Some of the memories I treasure the most are ones that I choose not to share. They are embedded deep within me; the stories that usually ended with “Don’t tell Mom!” are ones that only we knew. Now, I am left to reminisce about these alone. They were our secrets, and I intend to continue keeping them.
Now, my memories of my beautiful father are all that I have left of him. This harsh truth of my new reality reminds me to treasure each day. As you walk through life, stop and think that you might be creating memories that your loved ones will carry with them for years. Live each second with that thought; if you do, you’ll do a lot more living, and create a lot more unforgettable moments.
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