Posts Tagged ‘caregiver’

Communicating About Your Cancer

April 4th, 2013 - by admin

by Anne Gallagher

 

Do you share everything about your cancer diagnosis with your family and friends?  And if you do, do you do it right away?

I have been accused of withholding information in the past from my loved ones about my lung cancer. When it comes to communicating with family and friends about my cancer diagnosis, I feel strongly that it’s up to me how and when the information is disseminated.

Some people need time to process.  I am the type of person who needs to mull over information and digest it before I can reasonably talk about it with another person.  For years I did keep information somewhat hidden and only gave out small amounts of information because I thought I was protecting them.  What I have come to realize is that I was protecting myself.

It was very difficult for me to watch my family and friends experience the information that I was giving to them so instead I limited that information.  The more emotional I knew the person would be, the harder it was for me to share openly with them.

Communicating with family members and friends can be a tricky situation.   Not only is the patient dealing with the information about themselves, but they are dealing with the emotions of their support system.

As a Patient Navigator I will frequently see patients choose wisely who they bring with them to a consultation.  They may not bring the child who is the most emotionally fragile, or the person who may be a distraction rather than a support.  While it is important to have that second set of ears in the room, make sure that it is someone who can write down good information without being too distracted by the news.

I encourage patients to have at least one person in their life that they can be really honest with.  I don’t care if it is a spouse, long-time friend, or even a therapist; patients need one person that they can say how much this really stinks to.  I know that family members and friends  just want to be helpful but letting the patient guide the communication is an important piece to being helpful.

Patients also need a gatekeeper for information and the information that is being shared.  It might be a person designated this responsibility or  one of many websites that are designed to communicate information for patients.  I especially like Caringbridge.org or Mylifeline.org.  Both of these websites allow you to journal what is going on and then your family and friends sign up to receive a notification when something new is written.  This allows a great number of people to get information without the patient getting many phone calls and stops patients from having to tell the same story over and over.  Not only is this a private way of communicating but friends and family can leave messages to the patient and those little notes can be very uplifting during difficult times.  Many patients use Facebook to communicate and creating a closed group is another option.

Most patients receive offers of help, especially early on in a diagnosis.  As a new patient it is hard to know what to ask for and it is also hard to swallow that little bit of pride and independence and ask for help.  I find that people really do want to help but they need very specific requests. It is our responsibility as patients to say exactly what we need.  Sometimes that means a specific task like a meal for a night, childcare, or a ride to treatment.  Sometimes it means saying that I just need someone to listen to me or even give me some space.  There are great sites like lotsahelpinghands.com or mealtrain.com  in which patients can list specific needs and friends and family can sign up for duties or to bring meals.  These duties can even be coordinated by another person so the patient can focus on their treatment.

Communicating throughout a cancer experience can be difficult but there are tools that can help.  Always keep in mind that all parties involved are hearing the information with their own set of circumstances and with their own emotional abilities.  Sometimes family or friends do not behave or communicate how we expect them to in this situation.  Honesty and forgiveness go a long way in this area.

Communication is the key to getting through this process.  So keep those lines of communication open as much as possible.

If you need help communicating with your caregivers and family members, visit LUNGevity’s Caregiver Resource Center for resources and suggestions.  Post your ideas, tips and suggestions below.

**You can see Anne at the 2013 LUNGevity HOPE Summit in Washington DC where she will be speaking on a panel about Surviving with Cancer.

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An Attitude of Gratitude

February 20th, 2013 - by admin

By Sue Bersh

“The ship of my life may or may not be sailing on calm and amiable seas. The challenging days of my existence may or may not be bright and promising. Stormy or sunny days, glorious or lonely nights, I maintain an attitude of gratitude. If I insist on being pessimistic, there is always tomorrow. Today I am blessed.” ― Maya Angelou

 If I had to sum myself up in one sentence it would be: I AM GRATEFUL.

There is nothing I am more grateful for than my husband and three incredible sons – each is a dream come true. My gratitude list is a long one – so many people and experiences that have made me who I am.  I have learned that even out of sadness and hurt can come blessings.

When I was 15 years old, my Grandma Harriet died of lung cancer. My twin brother and I were her only grandchildren. We spent lots of quality time with her, and she adored us. Her life ended much too early, but to this day I feel extremely connected to her, and I am grateful.

When I was a sophomore in high school, my closest friend told me she didn’t want to be my friend anymore, and I was heartbroken. A few months later I found a new group of friends who have remained my friends for life, including my friend Elyse. Out of heartbreak came lifelong friends, and I was grateful!

Seven years ago Elyse was diagnosed with lung cancer. I intimately shared in her illness and treatment and watched her hopelessly fight a disease with a 15% survival rate (not much better than when my grandma died 30 years earlier). I don’t think I will ever be able to fully share what this experience was like, but suffice to say that I was changed forever by it. And although it was devastating to watch, I am grateful for what we shared, which equated to a lifetime of love and friendship in the 2-1/2 years that Elyse battled this insidious disease.

Call it fate or karma – whatever it is – I truly believe that all of our experiences, big and small, and our relationships build on each other to put us on our destined path with the people we are meant to be with. Hopefully this path will lead us to doing good and living a life true to ourselves.

I have found my path in my involvement with LUNGevity Foundation. I am proud to be a board member, and last year I organized my first Breathe Deep fundraising event (with the help of many good friends and LUNGevity supporters) in the community where I grew up and still live today, Deerfield, IL.  Over 1,300 people participated last May, and we raised an unbelievable $140,000. We engaged a community in an important cause. A few months later, Deerfield High School chose LUNGevity as the beneficiary of its annual School Chest fundraiser. These extraordinary kids raised over $135,000 in three weeks to fund lung cancer research, and they inspired many, many people to care about lung cancer. I’m not sure any LUNGevity experience will top what I was fortunate enough to share with those remarkable teenagers. I am eternally grateful!

As we plan our next event, Breathe Deep North Shore, I am grateful for a community that has opened its arms to LUNGevity. They have put the stigma aside and truly understand that lung cancer is a fight that needs to be everyone’s. Lung cancer takes more lives than breast, prostate and colon cancers combined; it is destined to touch us all. I have never been more passionate about anything in my life than this cause.

 I am particularly grateful for the friends I have made on this journey, especially my friend Jill. This 43-year old, non-smoking mom of four is the new face of lung cancer. I love her and admire all that she does to advocate for herself, her family, and this cause. Jill, along with my friends Jerry, Lynda, Mary, Patti, Heather, Tracy, Barb, and others battling this disease, are the reasons I am in this fight for the long haul. They need treatment options, and they and their families deserve hope.

We all should celebrate life, especially when faced with challenges and loss. We need to be passionate about what we believe in and love hard because every day and every person in our lives truly is a gift. We need to find our destined path and make a difference in others’ lives. We should give of ourselves in a way that fulfills us and BE GRATEFUL for the things that matter most.

I am grateful to have found LUNGevity. It has helped me heal and find meaning in a terrible loss. Join me on my journey and maybe it will become yours too (or at least inspire you to find your own). If you live in the Chicago area, join us for Breathe Deep North Shore, a 5K fun run, one-mile walk and balloon launch on April 28th at Deerfield High School. Join my team, Elyse’s Legacy, Jill’s Team, Just Breathe, another team, or start your own. Register or donate today, and share in a day of meaning and hope.

WE can make a difference in the fight against lung cancer.

 

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Juhi Kunde

A Stack of Forgotten Papers

December 17th, 2012 - by Juhi Kunde

Usually, my holidays are full of fun. My favorite part of the season is wrapping the presents my husband and I buy together. But this year, I have to do the shopping while my husband is away on business. That means I am faced with the daunting task of managing coupons – by myself.

During the rest of year, I am not that good at keeping track of coupons anyway, but during the holidays there are even more ways to save and it drives me crazy.

Yesterday, I was in line at Target and I managed to use two coupons I clipped from a mailer plus I got 5% off for using my Target Red Card. Of course, I was also hitting the store’s sale racks and I had even used a couple of digital coupons from my phone.

But I still left the store disappointed in myself and wishing my husband had been there to help.

You see, I had forgotten a stack of manufacturer coupons on my kitchen counter.

So there I was, digging through my purse looking for them when the cashier started looking pointedly at the line growing behind me. Eventually, I gave in to the pressure and signed for my purchases.

It is a lot of work to make sure that you have the right pieces of paper, the right technology and the right date, time and location to optimize a shopping expedition.

In fact, when you are trying to optimize anything, it is a lot work to have every single duck lined up. And just one wayward duck can leave you feeling ineffective and exhausted.

Of course, saving 50 cents on frosting is nothing compared to the stress of optimizing a visit to the oncologist. No one wants to be sitting in the doctor’s office when they realize they forgot important paperwork.

Being diagnosed with lung cancer can be overwhelming in itself but then adding the daunting tasks of tracking appointments, organizing medical records and timing medications could make anyone want to hide under the covers.

That is why I am grateful to the wonderful caregivers – our husbands and wives, our friends and children – who help us manage it all.

To all those strong people who keep us organized, focused and moving forward – I offer a heartfelt “thank you!!”

Do you have a special person who helps you keep it all straight? Leave a comment telling us about them or nominate them for LUNGevity’s Lung Cancer Caregiver Contest!

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Juhi Kunde

A Silver Lining of Gratitude

November 9th, 2012 - by Juhi Kunde

 

The first time I went to India, I was three years old. India was very different in those days. There were many mud-streaked, naked children living in tents or alleyways. Some of those kids were my age but they weren’t playing with dolls or having tea parties; they were banging on car windows to beg for food.

I have been back to India many times, and on each visit I have seen the country change and prosper. I have seen fewer and fewer children in such dire conditions. But those first trips to India have made their mark.

Now, on stormy nights I always offer a little prayer of thanks for the warm shelter around me. And I rarely say “I have nothing to wear” because I have seen people who truly don’t own clothing.

I guess that’s the thing about traumatic events, whether someone is facing a devastating diagnosis or witnessing an uncomfortable side of humanity, you eventually begin to appreciate the things you have. You learn to have a little gratitude.

And now, in the aftermath of Hurricane Sandy so many people are facing difficult, or even life-threatening, situations. Perhaps this is a good time for all of us to pause and take stock of the things we appreciate in our lives.

LUNGevity supporters have a lot to be grateful for – we have world-class researchers devoting their lives to helping lung cancer patients, we have a growing and active support community and most importantly, we have the hope of better outcomes for lung cancer patients in the years to come.

But that’s just the beginning, there are so many other things to appreciate too – friends, pets, laughter, a kind stranger – the list goes on and on.

Please share your stories with us — what are you grateful for?

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Katie Brown

It’s OK to Ask for Help

September 25th, 2012 - by Katie Brown

Being a caregiver was the hardest job I never applied for.

Like so many others, I was thrust into this position of responsibility and care without training, guidance or support. But I did it willingly because the person needing care was someone I dearly loved.

Throughout the care giving journey I learned many lessons and tips.  One of the most valuable pieces of advice I think I can share with someone new to care giving is that it’s OK to ask for help.  You don’t need to do this alone.

Most caregivers put their own needs and feelings aside when giving care to their loved one with cancer. I never thought about myself or my needs during that time. I was acting out of desperation to find any and all ways I could help ease the burden of lung cancer on my dad and my family.  In an uncontrollable situation I was constantly trying to find things I could control.  It kept me busy, it kept my mind occupied from wandering into negative scenarios or thoughts about losing my dad. But I later found out that putting your needs aside for a long time isn’t good for your health.

Your own health may fail and you may not be able to care for your loved one. And they need you.

This is why it’s important to ask for help.

It’s common to feel stressed and overwhelmed during the cancer journey. Like your loved one, you may feel angry, sad, or worried. Try to share your feelings with others who can help you. I had the Lung Cancer Support Community members, and I tried to talk to friends.  Truth is, they didn’t fully understand what I was feeling or experiencing, but it did help to talk about how I felt.  If you don’t have a good support circle to vent or share your feelings with- you can journal your feelings.  Many people begin to blog or reach out over message boards and social networks.  You can even talk to a counselor or social worker.

 

Talking can help.

 

It’s a good idea to talk with someone if your feelings get in the way of daily life or begin to overwhelm you to the point of dark thoughts, sleeplessness and uncontrollable anxiety. Maybe you have a family member, friend, priest, pastor, or spiritual leader you can talk to. Your doctor may also be able to help during this time.

Here are some other things that may help you:

  • Know that we all make mistakes whenever we have a lot on our minds. No one is perfect.
  • Cry or express your feelings. You don’t have to pretend to be cheerful. It’s okay to show that you are sad or upset.

I spoke on a panel discussion a few years ago and a survivor said something that I will never forget and I repeat often.  Survivors get a schedule of events.  They have appointments, scheduled treatments and medications and medical professionals dedicated to them.  They are the ones with the cancer so they have a free pass to be angry, whine, be tired, complain and have bad days.  Caregivers get the short end of the stick.  They have to pick up the pieces, shoulder the burden of responsibilities, care for the patient, be an encouragement and cheerleader and do it all with a smile on their face.  Who takes care of a caregiver when they are feeling overwhelmed, helpless or hopeless?  I was in awe that this survivor had such insight into how some caregivers feel !

  • Focus on things that are worth your time and energy. Let small things go for now. For example, don’t fold clothes if you are tired.
  • Remind yourself that you are doing the best you can.
  • Spend time alone to think about your feelings.
  • Spend time doing things that are not cancer related.

 

Asking for Help


Many people who were once caregivers say they did too much on their own. Some wish that they had asked for help sooner. Be honest about what you can do. Think about the tasks you can give to others. And let go of tasks that aren’t so important at this time. Asking for help also helps your loved one because it lessen your burdens and gives you time to do things that bring joy back into your lives.

Don’t be afraid to ask for help. Remember, if you get help for yourself:

  • You may stay healthier and have more energy.
  • Your loved one may feel less guilty about your help.
  • Other helpers may offer time and skills that you don’t have.
  • Not only helps to relieve physical responsibilities but it may help relieve some financial burdens too.

One of the most important things I learned in hindsight-   There are people in your life who care about you and want to help.  People WANT to help.  Allowing others to help you makes THEM feel useful and gives them a way to care for your loved one too.

Click here for a great list of resources that might help you during your care giving journey.

 

 

 

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