Category: Uncategorized
Importance of Communicating to a Loved One with Mesothelioma
There are a few things that struck me this week as I was taking care of a mesothelioma patient. I always learn something from every patient. The patient, who had surgery was doing very well, and his wife came to visit him often. But, she was concerned about another family she had met while her husband was in the hospital.
The other patient was not doing as well, and he and his wife were from out of state. His wife was alone, although they had grown children who were in phone contact, they both told them not to come. At the beginning this plan was working for them, but as time went on, the wife needed some support and relief.
With the holidays approaching, they were reluctant to “bother” their children. Mesothelioma is a very difficult disease and treatment regimen to endure alone. To be far from home and to have this on your shoulders is a lot. Family and friends want to do the right thing, but often they don’t want to overstep their boundaries. People want to respect the patients and their families privacy.
In different situations when the parents did call for help, I have heard, “Why didn’t you call me sooner?” “We wanted to come, but you didn’t want us to.” Often, in the caregiver’s and patient’s eyes asking for help and support is an admission that things are not going well. What I have seen is that some caregivers and patients are not going to ask for anything, regardless of the situation.
As a friend or family member, keep this in mind. If you are calling and getting the same answer that they are fine and do not need anything, if this does not feel right, if your instinct is telling you something else, listen to it. Ask yourself this one question: “At what point are they going to ask me to come?” You might be surprised with the answer – it very well could be never. That answer is out of love, and is not to exclude you. They fear burdening you and upsetting your busy life. They also feel they should be able to handle this by themselves.
If you think you want to do something, just do it. Patients and caregivers don’t want to bother anyone, and sometimes they do not even know what they need. Often it can be just a warm smile, a hug or just a presence. Although you think you won’t make a difference, you have no idea how a small gesture will make someone feel. It is hard to handle mesothelioma alone, regardless of the holidays.
Please, if your instinct tells you to do something large or small, listen to it!
The Waiting Doesn’t Have to be the Hardest Part
Waiting for something to happen, whether you anticipate good news or bad, can be excruciating. Children waiting for the holiday feel every moment as if it is forever. They are anticipating a happy event. On the other side of that, for a mesothelioma patient waiting for lab results, the results of which will determine his or her course of treatment and next steps, the waiting is also excruciating.
People wait in our health care system for everything. For appointments, for doctors, nurses, phlebotomists, every aspect of care can involve a wait. A 2014 study found the average wait time in a doctor’s office is 20:16 minutes and is only getting longer.
What can you do to pass the time when waiting for an appointment for yourself or a loved one with mesothelioma? In an article by Lynne Eldridge, M.D., titled “Waiting Room Survival Kit- Activities to Combat Boredom,” she suggests instead of focusing on “losing” time, view this time as an opportunity to do something you enjoy- something you wouldn’t ordinarily do. Read a book that you have not had time to, talk with another patient who is also waiting and wants to talk. Bring a friend or family member with you and catch up. In our busy lives, when have you had the time to talk to someone without interruptions for 20 minutes?
Some of her other suggestions include writing a letter, often we have been meaning to do it but don’t have time. Balance your checkbook, work on your taxes, take a nap, make a to-do list, learn more about your portable device features.
Over the years there have been many lasting relationships formed in the waiting room. Patients and families waiting for the doctor in the mesothelioma clinic all have something in common: their journey with mesothelioma. Although I think the average waiting time in mesothelioma clinics is longer than 20 minutes, we have seen bonds that last a lifetime between patients and families.
However long the wait, whatever the reason, please know on the other end, if you are a mesothelioma patient, the team will do their best for you. Save your energy for positive thoughts to fight mesothelioma, possibly with a new supporter you met in the waiting room.
Your Presence Can Be the Best Present for a Mesothelioma Patient
As Christmas quickly approaches, we often scramble to find the perfect gift to give to our loved ones. When you are considering a present for a person or family dealing with mesothelioma, you may consider your presence also.
Many times, mesothelioma is a lonely road. Even though people come forward offering help and assistance, they may stay away in order to respect privacy or to avoid overwhelming those in the inner-circle. The truth is, the company is often welcome. Of course, call first to be sure that it’s a good day and time, but don’t stay away out of fear. Sure, there may be some people who shy away from guests for various reasons, but there are also some on the opposite end of the spectrum. My Dad was always happy to welcome family and friends, and those are some of his happiest times.
If you are looking for a more tangible gift, feel free to brainstorm, but also, you may just want to ask them if there is something that they would like! There may be something they need that they just haven’t been able to get out to purchase. Also, the person might appreciate a night out for dinner and a movie! Don’t be afraid to offer these types of things, but also don’t be disappointed if they say they would rather stay in. As I always say, allow the patient to dictate the environment around them.
From my family to yours, Merry Christmas! Don’t forget to stop and remember the true reason for the season and spend time with your loved ones. The memories made at this time of year are some that will last forever.
Mesothelioma Nurse Takes on the Inevitable Loss We All Face
The subject of death and dying is a difficult one to deal with. Reality and emotions are difficult to mesh when we have to deal with the loss of loved ones. Regardless of whether the loss was unexpected or we knew it was coming it is always a deep felt loss. A young person dying in a car accident or an older person dying from mesothelioma, the loss is equally felt by families, friends and the entire community.
We all understand that the one certainty in life is that we are all going to die. No one gets a pass on that one. No matter what we do, how we fight, how we prepare, how much we ignore that fact, it will happen. No one gets out alive.
When we are confronted with our own mortality, what we know in our heads, is different than what we know in our hearts. We all know mesothelioma is a deadly disease, but we expect to have some warning that the end is near. Unfortunately, just recently, two mesothelioma patients died unexpectedly.
One of the patients was scheduled to go home from the hospital the next day. He had surgery and had been doing very well when an unexpected complication quickly led to his death. Despite everything being done, everyone’s best efforts, he died.
The other patient had a long complicated course. However, he had had the maximum support and he seemed to have turned the corner. He was feeling better, no pain and he was finally able to go home with his family. He was home for a week, directing how he wanted things done, enjoying his beloved home and family, and he felt good. At the end of the week, he began to have difficulty breathing after he developed another complication. Again, despite the medical team’s best efforts, he died.
Both deaths left their families and the mesothelioma care team devastated. What could have we done differently? Why did it happen? Why now? The families were left questioning their decisions. Was it the best decision to choose this course of treatment? The decisions that they made with their loved ones were magnified and reviewed again and again.
There are no magic answers, no phrases to alleviate the pain and loss that the families are feeling. We do know that every time a mesothelioma patient dies, the mesothelioma team is affected. A review is held, decisions are reviewed, and patients are remembered as people with families and loved ones, not as mesothelioma victims.
Loss also renews the conviction to continue to fight for the mesothelioma victims, continue to work harder towards a cure. Enjoy today for tomorrow is promised to none of us.
If you have any questions regarding your mesothelioma treatment, feel free to email me at [email protected].
Advice to Mesothelioma Caregivers: Trust in Others
Watching someone you care about struggle with a mesothelioma diagnosis is an unbearable situation. You, yourself, are probably having a hard time as well, but feel as though you have to keep it all inside. Trust me when I say that this won’t help. It won’t make you a better caregiver, it won’t make you more supportive, and it won’t change your new reality. It is important to have some sort of outlet to express your feelings also.
By making sure that you are being taken care of, you will be more capable of helping the person you love. Find trusted friends and have an open and honest conversation. If you like to exercise, go for a long walk or jog. If art is more your speed, go to a museum or a class. You have to find what outlet works best for you individually. If you’re not sure what this may be, try something brand new! You might find joy in the most unexpected activities.
Also, it is very important to stay, or get, in touch with your faith. It will be the stronghold that carries you through this, and any tough times that you encounter throughout your life. Remember, it’s ok to ask for help. There are many support groups and organizations out there that will be able to assist you. The key is to find out what you need, and act upon this realization.
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