Being a caregiver is a taxing experience. You are being asked to juggle the needs of your loved one along with those of any additional family members, not to mention attending to your own self-care. Easier said than done, right? Know that you are not alone. Caregivers need just as much support as their loved one dealing with the illness.

 It is important to be mindful of any changes and signs of acute stress you may be experi­encing. These include:

• Changes in Sleep

• Changes in Appetite

• Exhaustion/Fatigue

• Withdrawing from friends and Family

• Feeling overly emotional/angry

• Feelings of overwhelming anxiety

 These are all normal reactions to the situa­tion you are facing. However, if they persist, then it can start to affect your own health. It is important to recognize these signs of acute stress so we can address them before it turns into chronic stress and burnout.

 It is absolutely essential that you take care of yourself. You cannot possibly begin to care for another if you aren’t taking the time to care for yourself. Below are a few things you might want to think about putting into place; start with just one if you are already feeling overwhelmed. Sometimes just having one small thing in place can go a long way towards your sanity and relief.

 Nutrition and Rest

It may sound very basic, but you need to eat well and rest when you are able to. This means making sure you eat enough fuel to keep your strength up and rest when you have the opportunity to help with your stamina. Make sure you drink plenty of water. And don’t forget to take a deep breath every once in awhile – deep breathing can help with fatigue and anxiety. Make time for yourself to relax and rejuvenate, even if it is only 15 minutes per day – take the time.

 Educate Yourself about Brain Cancer

The more you know, the better you’ll know what to expect and you will feel more in control of the situation. Ask doctors and nurses about your loved one’s condition and what you as a caregiver need to know. The Internet is also a very good way to learn more about your loved one’s disease. The National Brain Tumor Society  (www.braintumor.org ), The American Brain Tumor Association (www.abta.org ) and the Brain Tumor Foundation (www.braintumorfoundation.org), The Chris Elliott Fund (www.chriselliottfund.org )  are excellent places to start. As you research, write any questions or comments you may have for the doctor and take them to the next appointment.

  Delegate Tasks to Family and Friends

You will find friends and family are more than happy to help in time of need. You just need to ask, or more often than not just need to be ready with “tasks” when they volunteer to help.  Things like cooking meals, running errands or cleaning can all be delegated to friends and family.  Have a list of “tasks” that others can do ready, it will help when you are tempted to give the standard response of “I don’t think there is anything you can do to help right now.” Having someone else pitch in and help you with these tasks will leave you with time to concentrate on providing care for your loved one. If you need help in organizing a “Share the Care” schedule, you can visit www.sharethecare.org .

 Get Organized

Many caregivers also are responsible for maintaining medical records, insurance claims, and finances, not to mention medica­tion and eating schedules. The key to success here is organization. Keep medical records neat and accessible by storing them in a large file, organized by date. Medicine schedules can be created with a spreadsheet, then printed out daily or weekly, or use a blank template of a medication log.  As each dose is given, you can check it on the sheet with the time. The same can be done for eating schedules.

Join a Caregiver Support Group

Whether it be online or through the hospi­tal, a caregiver support group is an excellent way to meet others going through the same thing as you. It really does help to have someone who can provide you with tips or can identify with daily care giving life. The Brain Tumor Caregiver Support Group at Swedish meets on the 1^st Wednesday of the month.  The Brain Trust runs an online support group for caregivers   (www.braintrust.org ). Cancer Lifeline (www.cancerlifeline.org ) and Gilda’s Club (www.gildasclubseattle.org ) are also great resources for you. They offer a multitude of services, groups and classes for the whole family.

When to Seek Help

If you feel like you may be experiencing caregiver burnout, see your primary care physician. He or she can make recommen­dations based on your symptoms and personal information. Some caregivers find relief in regularly talking to a therapist, social worker or religious counselor while caregiving.

If you need to speak to a caring, trained, professional right away no matter the hour, then you can consider calling the 24 hour lifeline at 1-800-255-5505. The phone line is answered by trained volunteers at Cancer Lifeline 24 hours a day.  If you have thoughts of hurting yourself or your loved one, go to your local emergency room or call 911. Severe burnout can result in these feelings, but help is always available.

Caregivers have a tough job, and my advise is this:  do the best you can in each moment and be open to receiving help – for your sake as well as your loved one.   

Stacie Beam-Bruce, MSW
Chris Elliott Fund Integrative Care Specialist
Neuro-Oncology Social Worker
Ben & Catherine Ivy Center for Advanced Brain Tumor Treatment
Swedish Neuroscience Institute

We have to have funds in order to give to research.  We have to have funds in order to pay professionals and not always rely on volunteers who already have a fulltime job.  We have to have funds to make a difference, and I am quite passionate about this issue.

People ask me all the time, why isn’t there more being done.  I have to say, I am doing all I can with myself and with my volunteers, and the next question is have you given lately?  It all starts with each and every one of us to end this disease. 

If you feel like helping and partnering with the Chris Elliott Fund, because you have decided after clever and thorough investigation that this is the charity you have chosen, the charity or fund that can make a difference with this disease, then here are a few links for you to take action:

http://www.chriselliottfund.org/getinvolved/donate.html

Commercial PSA link with Jean Smart below.

http://www.youtube.com/watch?v=bToqSpBT7Bk

I was reminded  last Friday once again, what it means to be around a handful of unique individuals who understand the difficulties of each situation and strive to do whatever it takes, whatever is best for the patient–this is where they focus their efforts, whether politically correct or not, they advocate and service the life of the patient and somehow connect to what is right and what is honorable when it comes to the patient and their care. 

I am lucky to have one of my inspirations right here in Seattle, and I felt the need this evening to reach out and say, thank you Dr. Gregory Foltz for all that you do.  You inspire me to end this disease with you, and believe me, we will.

As you know Jean has taped 8 new PSA’s for us, 4 of which are featured below. We are so blessed to have Jean assisting us with building brain cancer awareness.

Please share these PSA’s with friends, family, facebook, associated blogs, twitter, and let’s get the word out and EndBrainCancer.

 The Smart family has requested that tributes in memory to Georgia Smart be made to the CEF and that all support our efforts to educate and create awareness about this disease as well as our efforts to fund research for a cure.  If for no other reason than this request, please consider making a donation TODAY.   THANK YOU.  Those of you who know me, know that I work very hard to help save lifes of those about to be diagnosed with brain cancer or those who will be diagnosed.  I am happy and saddened at the same time to tell you about my new AWARENESS partner, emmy award winning actress, Jean Smart

My recent experience and the reason that I want to share it is because TODAY, I am feeling particularly GRATEFUL to a kind, funny, real and warm lady that I now call “friend”,  Jean Smart. At the same time, I am sad and  feeling her and her family’s pain and again, wishing that I could have saved another brain tumor patient’s life.  Georgia Smart, Jean’s sister, recently passed away from her Glioblastoma brain tumor.  Through the CEF, I am so lucky to meet so many people that I would not normally meet.  One of those special people was none other than Georgia Smart.  I will always remember her laugh and her love for her lipstick and I will always hear her say “A Gal’s Got to Have Her Lipstick”.  I am so smiling right now as I write this and remember Georgia.  Georgia, you will be missed by MANY.  I KNOW you are in excellent company with some of my and CEF’s  friends in heaven who have also lost their lives to brain cancer.  I am forever grateful to have met you and I will continue to fight for you as well as for so many others.

I’d like to take this opportunity THANK Jean Smart for reaching out to me so many many months ago for my and the Chris Elliott Fund’s (CEF) help when her sister, Georgia, was diagnosed with brain cancer. I only wish we could have done more and since that time, I have learned so much more about this disease and exactly what to do when one is diagnosed and even BEFORE one or one’s loved ones are diagnosed. These topics are for another BLOG post for another time….

Last Monday was a day like no other that I had experienced before.   Jean drove herself to my home, hair in curlers, carrying an extra outfit, ready to do whatever the Chris Elliott Fund needed her to do.  I love her attititude!  She was ready to work and was ready to fight this disease by working many long hours in front of a production/camera crew and cut eight TV PSA’s to drive awareness and bring this disease out of the shadows and into the light of AWARENESS and HOPE!  THANK YOU Jean.

I often refer to Jean as my “sister’ and sometimes, I just have to say “pinch me” while at the same time, realizing that it is under very difficult circumstances that Jean has come into my and the Chris Elliott Fund’s life…..I will BLOG about my experiences with Jean last Monday shooting TV PSA’s as well as why I call Jean my “sister” tomorrow as there is a new brain tumor patient asking for our help that I need to work with.

Please join me in expressing my sincerest symposthies, blessings and love to Jean and the entire Smart Family while wishing them much strength.  Blessings, Dellann Elliott, President & CEO, Chris Elliott Fund for Glioblastoma Brain Cancer Research