Author: Joseph Belluck
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.
Ask Jennifer: What Mesothelioma Symptoms Did Your Father Have?
It seems like people who are diagnosed with mesothelioma all have a different story as to how their symptoms appeared. For my Dad, it began in the Summer of 2011, when he started having trouble catching his breath. He chalked it up to the extreme heat that we had that year, continued working and didn’t miss a beat.
His difficulty breathing continued to get more severe. He said he knew that there was something really wrong when we were walking outside in the Fall and he had to stop and take a break. He began to lose weight and was unbearably tired all of the time.
Because of his exhaustion, his personality even began to change. His usually unshakable, bubbly demeanor gave way to one of concern and fatigue. He would go to work, come home and take care of his ailing mother, and that was it. This man who was always ready to go was now increasingly becoming a homebody.
By the time Dad was finally diagnosed, he had lost around 30 pounds. He was struggling to work and continue on with daily activities. Once he had his pleurectomy, on February 15, 2012, he seemed like a different person. The lining of his lung was removed, and he became more like his old self immediately, having almost a new lease on life.
Everyone has a varying story with their symptoms and treatment, but this is the experience my family went through. We are thankful that he was correctly diagnosed and treated so quickly by amazing doctors and medical professionals.
Know more about Mesothelioma and how you can deal with it.
Fun Times at the Shore Helped Me and Dad Forget About Mesothelioma
For the most part, summer is the happiest time of year for my family. I sometimes wonder why we stayed in the Northeast, when my whole family loves warm, sunny weather. As you might remember, I am a teacher and I have a wonderful opportunity to move down to the Jersey shore in the summertime. My family grew up going to Cape May and Wildwood each year for family vacation, sometimes several times in one summer. So, by renting a shore house I make it very convenient for my family to come visit me.
This past summer while Dad was resting and allowing his body to become stronger, he took a trip to visit me at the shore. Since my mom and brothers have a hard time getting off work, he made the trip solo. I think that this may have been the only time ever that just my dad and I were able to spend a few days together doing things we enjoy. Father/daughter bonding week it was!
I had planned a few nice dinners at great restaurants that we went to when I was a little girl on our summer vacations, and we were able to reminisce about “the good ole days.” One place that we both love is The Lobster House in Cape May, NJ. I would guess that almost every summer on vacation we ate at this place. Amazing fresh seafood and the best clam chowder! While eating dinner, I could see that my father did not have the appetite that he used to have and we had a lot of leftovers for the next day’s lunch.
The following day I took him to the pool to relax on lounge chairs and do some reading. We relaxed all day and at one point we took a walk down to the ocean, which was next to the pool. It was slow going since walking on the sand was a workout for Dad. We had to stop multiple times for him to catch his breath, but he made it down to take a dip in the ocean. He even dove into a wave, which he has always enjoyed very much. We also were able to take some funny pictures of him showing off his “strength.”
We will both cherish this father/daughter vacation week forever. It was so nice to get him away from his normalcy at home to the beach and to enjoy the things he used to do on summer vacations. I even made comments about how it was easier for him to breathe in the air down the shore. I’m not sure why that would be, but maybe it was just because he was happy and away from all the normal daily stresses he has. Time to get away and forget about how much his life had changed in the last few years was well needed.
I recommend taking short trips, if at all possible, when your loved one is feeling up to it. It is always nice to escape for a short time and to forget about mesothelioma and how you and your loved one’s lives have changed because of cancer. Vacations or short get-away weekends give everyone a short relief to enjoy life and to see the beauties of the world.
After fun at the beach, Dad headed back to Penn Medicine to start his immunotherapy treatments. Find out more about his clinical trial next week.
Battling Pneumonia and Mesothelioma
In my previous blog I talked about keeping Dad as healthy as possible and away from germs that could be brought into the house while he recovered from his chemotherapy. Sometimes it’s impossible to know how someone was exposed to germs that makes them sick, but unfortunately, this past summer that’s exactly what happened to my father. He developed pneumonia and was very quickly on his way to the hospital.
This was a very scary thing to happen to him. It was early June when my mom had to take him to the emergency room because he could not breathe, and he was having very violent coughing attacks. He was also at the very end of his chemotherapy treatment when he landed himself in the hospital, so his immune system was already suppressed and he was very weak.
I received the phone call from my mother on a Friday to let me know they were at the hospital, but at that exact time they did not even know what was going on. She told me to stay put and she would keep me updated. I kept in contact the entire weekend while simultaneously training for my new summer job at the local yacht club – all the while hiding how upset I was. Sunday morning I got a call from my mom, and the doctor had requested I come home to see him.
I was very scared to hear this from his doctor in the ICU. He had said that they were going to have to intubate Dad, and I might not be able to talk to him again. This was serious, and they did not know if he would recover because of how run down his body was from the chemo treatments.
I raced home first thing and went straight to the hospital. When I got there, the doctors had decided that they were going to be able to get away with not putting Dad on a ventilator after all, which was amazing news. From the time that I left the shore and the time it took me to get home, his vitals were stabilizing and he seemed to be getting a little better. I sat with him all day Sunday and talked to him, with him not responding of course, but it made me feel better and I think it made him feel better that I was there.
Dad was in the hospital for another week or so and was finally released to come home. He had an appointment with his University of Pennsylvania doctors within a few days after he left the local hospital near my parent’s home. His doctors at Penn had told him that he could not finish the chemotherapy because of how sick he got and it was to the point where his body was unable to fight off a sickness by itself. This showed that the chemo totally knocked his white blood cell count to almost nothing and he could no longer fight off germs. His new goal was to get stronger and healthier before the next step: immunotherapy.
Keep reading next week about how Dad and I were able to put mesothelioma on hold, at least for a week, while we enjoyed a vacation at the Shore.
‘Hellos from Heaven’ Keep Me Going
In the middle of the night last night, I woke up and instantly began to cry. My husband asked me what was wrong and I answered, “It was Dad.” In my dream, my Dad was here, but we didn’t know for how long. He was singing with his band. The song was a song about faith, one that I had never heard before, but it was complete in my dream. The image and sounds are embedded into my brain.
I then went in to check on our two month old baby girl and I began to cry all over again. She looks just like Dad and sometimes, when I look into her eyes, it’s like he’s staring back at me. A flood of emotions overtook me; they were a combination of sadness, love, and gratitude.
Even though the sting of losing Dad remains with me at all times, reminders like those I experienced last night reaffirm that he’s always with me. These little miracles tend to bring me to tears at first, but once I regain my strength, I am so grateful to have them.
They always say that God works in mysterious ways, ways that we have no way of understanding. Perhaps it’s the mystery of these unexpected “Hellos from Heaven” that astound me the most. I believe that God provides these gifts to show us His love, that His hand is in everything.
Dad always talked about the beauty of the world and everyday life. What may seem like an ordinary day is full of wonder and miracles. We just need to open our eyes to see them. So many times, we are too busy with the hustle and bustle that we forget to stop and look around. Even when he was feeling his worst, Dad reminded me that there was good in every situation.
Time is not guaranteed to any of us, and it is important to recognize that. Life is too short to spend it being inconsiderate or rude. There are far too many chances to be kind; take them. Find the good, and when you get a “Hello from Heaven” be sure to take a minute and cherish it.
Know more about Mesothelioma and how you can deal with it.
Free Mesothelioma Patient & Treatment Guide
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It contains a wealth of information and resources to help you better understand the condition, choose (and afford) appropriate treatment, and exercise your legal right to compensation.
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