Here’s a new blog from one of our guest bloggers, Stacie Beam-Bruce.  Stacie is the Chris Elliott Fund Integrative Care Specialist and assists in running our Integrative Patient Support Group at The Ben & Catherine Ivy Center.  Stacie’s blog is below, and thank you Stacie for taking the time to be our guest blogger for today:

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

Have you ever wondered how research, diseases, CURES come about in our world?  Take Glioblastoma Brain Cancer for example–how come people wonder why Glioblastoma is under funded that there is not enough awareness… and how many of you would know what to do today if you or a loved one were diagnosed with GBM…but when others wonder why the disease is moving forward at a slower pace, let’s say to breast cancer, and you ask them how much they have given in regards to money for research for brain cancer, and they suddenly have nothing to say.  It’s interesting, the Chris Elliott Fund is run by volunteers.  Just think what we could do with funding.  So at this rate, we are working 12-16 hour days, and relying on volunteers to get the simple things done like sending out a letter, mailing awareness bracelets to patient outreach volunteers, printing out materials to build awareness, and at the same time setting up meetings with key decisions makers so they understand what advanced brain tumor treatment is, and answering the 15-20 inquiries that come in everyday asking for help and assistance.  Each request takes numerous hours to fulfill and facilitate.  If we had funding, we could do so much more.  Many people ask me again and again, how can we do more?  You can all do more by donating a small amount, 10.00 dollars or 20.00 to brain cancer.  It doesn’t have to go to the Chris Elliott Fund.  It could go to a place where you feel it should go, and that’s all good.  The point is, please take action and don’t expect this disease to progress in regards to research and awareness if research and awareness does not receive the funds in order to beat this disease.  You know that the Chris Elliott Fund leads the country in regards to building awareness for this disease.

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

It’s almost been ten years since I heard the word Glioblastoma, and in those ten years, I have had the pleasure of meeting only a handful of the most compassionate and endearing brain tumor specialists ( I am sure there are more and I look forward to meeting them) but for now there have been only a handful that I have had the opportunity to embrace.  They spend their days working with brain tumor patients, their families, their caregivers, and working within the walls of their highly constricted political systems, and somehow break through to really make a major difference with this disease as they truly become part of the cure.  They are truly my heroes.  Each time I meet one of these unique and compassionate individuals, I am reminded about human kind and what it’s supposed to be like for everyone, as I am rejuvenated, recharged, revitalized, and instilled with hope.  I want everyone to be treated by one of these amazing, caring specialists, as they provide a real life extension to the patient’s outcome and diagnosis, through knowledge and humankindness.  They can actually extend lives, save lives, and make a difference from living 6 months to….?  They extend the quality time and life of each individual that they treat.  I am so grateful for these people in my life.

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.

And what’s the title have to do with brain cancer?  A friend of mine, who is a long time Microsoft Partner, invited me on a great weekend getaway, wine tasting, meeting new people, meeting other Microsoft Partners, visiting Walla Walla, one of my favorite places to visit–of course I had to say yes. 

Tasting new wine is always fun, but my real mission is for all of you, brain tumor patients, survivors, care givers, because the real reason, the big reason, of why I went, is to connect with people who can help the Chris Elliott Fund, with our vision/mission:  to end brain cancer through education, awareness, advocacy, and research.  So what’s a little fun along the way—laughter is the best medicine, along with good company, and a little vino…

I arrived with mission in hand at http://www.vineandroses.com/ and checked into the Rhone Room, where I barely had time to change my clothes and off I went to http://www.whitehousecrawford.com/ for dinner.  It was amazing because wine brought us all together, as I sat there and absorbed the moment, and perused the room, the common ground was the wine that brought us all together—same with my work and my outreach as I reflected for a moment, that the patients, the outreach, and helping others with brain cancer, brings us all together.  It’s the connectivity of the moment and I lingered on the thought and smiled. 

New day, I was hoping for sun and sandles, but ended up wearing a sweater and cowboy boots, despite the previous warning, that the days only required  t-shirts as it was “so warm”.  That’s how life is, oh well…

The sunny spot of the day………..pursued by the bear…  http://www.pursuedbybearwine.com/ I had the pleasure of meeting Kyle MacLachlan, aka Brie’s husband on Desperate Housewives, and sharing with him the Chris Elliott Fund and our mission.  It was fun to share with him, his brother’s involvement with the Chris Elliott Fund, his band/fundraising years ago, as he helped us raise funds in the early years. 

While having my picture taken with Kyle, I had an epiphany, tying back with our celebrity spokeswoman Jean Smart, http://jsdaily.net/ and suddenly thought about tying her back to another fond winery that I will mention below and doing an event for the Chris Elliott Fund.  Yes, it was good wine, and sometimes we need that to get the juices truly flowing, however I have saved the best for last.

After a great day of wine tasting and meeting fun folks, I settled back at the http://www.sinclairestatevineyards.com/ tasting room for a private dinner cooked by Chef Maddrey  http://www.fatduckinn.com/ with a small group for a lovely dinner and great conversation.  Guess what I talked about, hmmm………..

I do have to say that the 2007 Merlot Columbia Valley, –only four barrels produced, was my absolute favorite, and certainly one of the highlights of my day.  Pull me out of the barrel and bring me back to brain cancer and the Chris Elliott Fund–it was an amazing weekend to taste and to connect. 

Even after great connections and wine tasting,—yes, I have several action items.  The first one is (Jean I’ve got a Chardonnay for you, and we are going to Walla Walla)—yes, I volunteered Jean to be our Kyle MacLachlan, meaning Jean could be our spokewoman and do an event at Sinclair Estate Vineyards, and help build awareness for brain cancer.  Action item:  design wine label-lol. 

So, on that note, it was indeed a weekend of Vine & Roses http://www.vineandroses.com/, and brain tumor awareness, and well worth the trip.

Many of you have asked about information regarding the Chris Elliott Fund, and how we can give back when someone passes away.  Whenever anyone passes on, it’s a difficult time for the family, loved one’s, friends, everyone who is tied to that person.

Sometimes giving back to a charity during this time, can help alleviate some of the pain, especially if the person who passed wishes to support an organization or send donations in lieu of flowers.

We get these requests quite often, and we thought it would be a good idea to post a simple memorial piece that you can hand out to others to let them know that you would like donations to go to the Chris Elliott Fund to support Glioblastoma Brain Cancer Research when the time comes. 

Again others can be receptive to giving to a charity rather than sending flowers, and the feeling of giving back does ease some of the pain of the passing.

Please let us know if you have any questions about using this memorial piece and how it can be used to give back and help fund a cure for brain cancer. 

The piece is inserted below, and can be used when appropriate to let others know that giving a donation to the Chris Elliott Fund would be preferred in lieu of flowers.

In Lieu of Flower Card