Chris Elliott Fund

Bringing HOPE to the lives of brain tumor patients & their families

Caring for the Caregiver

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 1st 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

2 Comments

  1. I Just wanted to say Thanks to Stacie! I am approaching 2 years now, next Month with Glioblastma.
    Stacie is awesome she helps with my care and she is helping my Daughter my home caretaker get through this. Sometimes when I feel like giving up, I am reminded of all the work she, all the others at Swedish and of course My Daughter have put into keeping me going, I know I have to keep up the fight, if not for me then I must fight, to Honer them! I love them All for whom they all are!!!! Mont A. And a final note for all the Caregivers out there, U make everyday I have a blessing Thank You!!!!!

  2. Alot of times the caregivers are forgotten.