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Caregiver Stories Articles: Page 2 of 3

Mesothelioma Caregiver

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!

Mesothelioma Aha Moments

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

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!

Mesothelioma Caregivers - Lung Cancer

Help Ease the Pressure On Mesothelioma Caregivers

Being a caregiver for a mesothelioma patient is a challenging, yet rewarding, experience. When you are helping out a loved one facing mesothelioma, remember to care for the caregiver as well.

Living three hours away from my parents, I was a part-time caregiver for my father. Helping him accomplish tasks that he used to do without hesitation was challenging, but mostly on an emotional level. Having family members and friends to talk to helped me tremendously. It was tough to see such a strong, active person as Dad having to ask others for help cutting the grass, cutting down a tree, moving something heavy. Being able to voice my concerns and share my feelings was (and still is) invaluable to me.

You might wonder what you can do for the caregivers, family members, and friends. As I said, for me, a listening ear made all the difference. You might offer to prepare a meal for them or to give them a night off and take over their duties for the evening. Sometimes, it’s tough to get out to run errands; pick up some groceries for them!

I know that for my Dad, it was hard to be stuck in the house in the cold weather. He loved being out in the snow, but with the meso and its effects, it made it difficult for him. In cases like this, go visit them. Take over a movie or a board game; make it a fun night in for everyone. This could also allow the caregiver some light-hearted time. They appreciate the gestures and company just as much as the patient does.

Above all, remember that just because someone has mesothelioma and their family and loved ones are caring for them, they are the same person as before their diagnosis. They need prayers, love, and support. Your friendship and concern can provide respite and peace to them when they need it the most.

Know more about Mesothelioma and how you can deal with it.

Daughter Encourages Her Father, and Other Mesothelioma Patients, to Be Open to Help from Others

Your Father's Mesothelioma

My father has been through seven months of treatment for his pleural mesothelioma: surgery, rehabilitation, chemotherapy, and radiation therapy; but now he is back to living life as normal as possible. He has returned to work and this helps him find normalcy again, for he has always been a very hard worker and does not like to be idle.

His work requires him to walk around a lot in a large warehouse. This is both good and bad. It’s good that he is getting exercise to help his lungs become stronger, but he does have to take frequent breaks and sometimes use his oxygen in his office. Besides returning to work, he also does his daily, routine work around the house, such as taking care of the pool, trimming back trees, moving and stacking firewood for the woodstove, and decorating for Christmas – there really isn’t much he has stopped doing since his diagnosis.

It is so great to see my dad back to his old self, but I have to remind him sometimes to ask for help. He’s a man of action and wants to get things done, so he takes a lot on himself. Just over Thanksgiving, while I was home visiting for the holiday, he was getting dressed to go outside to bring in firewood. I said to him, “Dad, I hope you’re not going to the back of the yard alone to get a load of firewood.” His shocked response to me was, “Well yeah, why not?”

I rounded up my two brothers and we walked behind his pickup truck to help. When we got to the back of the yard, he attempted to load up the firewood to fill the bed of the truck. Well, within a few minutes he was huffing and puffing and had to take a break. I said to him, “Dad, we’re here, and we can do it. You watch.” I could see him struggle to take a step back and accept our help, but he listened, and my brothers and I were very happy to help.

While he was in the hospital recovering from his extrapleural pneumonectomy surgery, I wrote him a letter to encourage him and to let him know what I was feeling. One thing that I asked him to do was to please open up to us and accept help from others – he is one that never asks for help and he takes care of everyone else before himself.

I wrote:  “I have found out recently that talking about your feelings and anxieties and accepting help from others makes you feel so much better and it does not make you seem weak. It brings you closer to people. Who knows though, maybe you will return to your complete normal life, but please know that we are here for anything that you need, even if it is just making you a grilled cheese sandwich.”

My message and advice to other mesothelioma patients is to accept help and to not feel ashamed about it. Your friends and family want to help you – they don’t want to see you struggle. Like I said to my dad, it does not show that you are weak when you accept help, rather it brings you closer to the people who love you.

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