A pilot program in Washington State provides unpaid family caregivers short breaks. Read all about right HERE!
Caregiver’s Corner by Brain Energy Support Team (BEST) Board Vice-President, caregiver and guest blogger, Maggie DePuye-Phillips
In keeping with the Brain Energy Support Team’s (BEST) theme for the summer, wellness, I’d like to focus on the importance of caregivers taking care of themselves. This is a common area of concern for many, if not, all caregivers. We focus so much on the loved one we care for that we often neglect our own needs, which may lead to burnout, stress, fatigue, and inefficiency in our performance. What good is that?
Have you heard of the airline oxygen mask analogy? When you fly on a plane, the flight attendant will typically go over emergency procedures and give instructions to put your oxygen mask first, before helping others. Why is this important and how does it relate to caregivers? If you run out of oxygen, you cannot help anyone else. So, if you do not take care of yourself FIRST, how can you take care of your loved one? Ponder that for a moment. What is it that makes it so challenging for us caregivers to take care of ourselves? Simply put: we have conditioned ourselves to believe that we are selfish if we do not consider others before us. It is our true nature to do for others because we possess the qualities of caring, nurturing, being responsible, supportive and competency. Like the Energizer Bunny, we keep going and going and going. Eventually, that bunny stops, when the batteries die. As caregivers, we eventually wear down and stop functioning!
When we apply self-care, we recharge our batteries and restore the physical, mental and spiritual health we so desire to maintain. Rest, healthy eating, going to a support group, reading a relaxing book, gardening, meditating, getting a manicure/pedicure and yoga or exercise are all positive ways for proper self-care. And this is not just a one-time deal–this must be done on a regular basis! Think about the responsibilities of owning a car and the maintenance
it requires to run smoothly. If we care so much about our vehicles to put in fuel, get regular oil changes, rotate tires and top off fluids, we certainly deserve to care about regular maintenance on ourselves, yes? Without these outlets, we will only return running into the ground feeling burnt out, irritated, lonely, sick and even depressed. Yet, when we do get
respite care or even take a ten-minute break, we can’t help but feel some guilt, right?
You are not alone.
At a recent caregiver conference I attended in Tukwila, I had the pleasure of listening to Elaine Sanchez, an author and co-founder of a caregiver website, CaregiverHelp.com. (more details on this website to come). Ms. Sanchez was the keynote speaker and presenter of two breakout sessions, which I attended as well. One of her workshops, Guilt: Get Lost, You Big Bully, was a huge eye-opener for me, as guilt is a common emotion I experience from time to time as a caregiver. I learned a variety of strategies to release guilt but the bottom line is, it is all a choice to feel guilty! Why choose to waste time feeling guilty when you can make use of your time better by feeling happy?
Change the way you think the next time you do some self-care, and I guarantee you, you will like the results. Well, it’s time to get rid of that guilt! Let’s put on our oxygen masks and recharge! Remember, self-care is not a luxury, rather, it is a necessity! Not only will our loved one appreciate us more, but we will appreciate ourselves better.
Until next time, enjoy the summer, make wonderful memories, and remember to take time for yourself!
Information & Resources
Check out this online resource: www.caregiverhelp.com. This site, developed by Elaine Sanchez and her husband, Alex, is an excellent tool for not only caregivers but support groups and professionals working with caregivers. Videos, workbooks, training and her books are available to you to tap into; however, it requires a paid membership. There is a 7-day free trial to see if this website tailors to your needs. Click on the FAQs tab of the home page to learn more information.
The Washington State Family Caregiver Support Program offers information, support and services to unpaid caregivers caring for an adult 18 years or older with functional disabilities. Services may include: referrals, consultation, education, training, support groups, counseling, respite care and more.
Powerful Tools for Caregivers, a national award-winning educational class series in a six-week class format, are offered throughout Washington State. Check to see if a class is offered near you by clicking on this website.
Building Better Caregivers online course: Are you caring for someone with dementia, memory problems, post-traumatic stress disorder or a serious brain injury? Consider taking this online course, developed by Stanford University, which helps caregivers take better care of themselves. This course is offered free of charge, courtesy of the National Council on the Aging.
Caregiving Matters Support Group: Are you looking for a face-to-face support group to join locally? Look no further! Starting in September, BEST will host a monthly support group for BESTies’ caregivers at Our BEST Space, every third Saturday from 1:00-3:00 pm. The group will be a place to obtain information, exchange ideas, and maintain friendships and will be facilitated by yours truly. If you are interested or would like more information, feel free to contact me via email: Maggie@brainenergysupportteam.org or call the BEST office.
From my caregiver toolbox, I will share various tips to help you become more effective as a caregiver. The following wellness tips are based on lessons learned from the book, Letters from Madelyn, by Elaine Sanchez.
• Set aside some time each day for yourself
• Get out in nature
• Learn something new
• Redefine fun
• Accept help
• Find a safe release for negative emotions
• Savor happy memories
• Stay connected socially
Once again, I am plugging for Elaine Sanchez, author of the book, Letters from Madelyn:Chronicles of a Caregiver. She wrote this book in honor of her mother, who wrote letters to Elaine about her life as a caregiver for her husband who had a stroke. Here is a description of her book:
A Kansas farm woman’s life turns upside down when her husband suffers a debilitating stroke. Tender, gritty, and uproariously funny, Madelyn’s letters to her daughter deal with the grim realities of aging, illness, and long-term caregiving, and prove that a person can grow mentally and spiritually, even when a loved-one’s life is not ending easily.
Lastly, I leave you with two quotes to ponder:
As long as we have the ability to think and to reason, we have the power to choose our attitude toward any person, situation or event. ~Elaine Sanchez
You are good enough. You are capable. You are important. You are worthy. You are loved. And you are not alone.~Anoymnous
Meet Maggie DePuye-Phillips!
Not only does Maggie serve as BEST’s board vice president, she has a personal and professional background as a caregiver. Caregiver’s Corner, is an exciting new feature on the BEST blog designed just for you. Maggie is there to offer the support, encouragement, tools and resources to help. You can take part, too: ask a question, share your own tips or take part in the conversation. Check out Maggie’s new column right here!
Welcome to Brain Energy Support Team’s (BEST’s) first edition of Caregiver’s Corner! Part of the BEST mission is to provide support, advocacy, public awareness, education and socialization opportunities to individuals with brain injury and their families. For most in the brain injury (TBI) community, family members are the primary caregivers. As a caregiver and a member of the BEST Board, I decided to help carry out the mission of providing support and advocacy to our BEST caregivers by creating a Caregiver’s Corner. I intend to provide information and resources, upcoming caregiver events, tips from my caregiver toolbox and inspirational stories and quotes.
My goal is to share with you the information and best practices I have learned from my own professional experience as a rehabilitation counselor, as well as from my personal experience as a caregiver, in hopes of empowering you to continue on your own journey as a caregiver.
As this is the first edition, I thought I’d introduce myself.
For six years, I have been a caregiver for a veteran who has a TBI and PTSD as well as foot injuries sustained from a skydiving incident while serving in the U.S. Marine Corps. My educational background is in deafness rehabilitation counseling and I have been in the field of providing rehabilitation services for over twenty years in a variety of capacities.
My professional career started at Northern Illinois University (NIU), where I was a counselor, providing direct services for students with disabilities, particularly for the deaf and hard of hearing. I also taught American Sign Language to undergraduate and graduate students during my term at NIU. In addition, I served on several professional organizations at the state and national levels. In 2008, the state eliminated my counseling position due to budget cuts. Seeing that it was time for a change, I moved to Washington State to start a new chapter in my life as a caregiver.
Although I had training as a professional and understood what a traumatic brain injury consisted of and its symptoms, nothing in the classroom prepared me for what I would experience as a caregiver. For most of my life, I have watched my mother be a caregiver for my grandmother, who lived to be 100 years old before she passed away; it was not until I became a caregiver for my partner, that I understood what my mother went through. I am forever grateful to her because unknowingly, I was learning patience, compassion, understanding, kindness, strength, courage, heartache, and even forgiveness. I was being prepped all those years, and only until recently, did I realize how I have been able to navigate this amazing journey of being a caregiver gracefully.
Since relocating to Washington, I became actively involved in my partner’s health care, ensuring that he was receiving the benefits he was entitled to as well as learning the ins-and-outs of the Veteran Administration system (not an easy feat)! I have met so many incredible people within the TBI community who have been very supportive of my partner and his needs. I decided to join BEST team as a board member and eventually became board vice president and I love every minute of it! I am also an active participant in the Caregiver Study program through the Defense and Veterans Brain Injury Center, which was founded by congress to provide state of the art clinical care, innovative clinical research initiatives and educational programs and support for health protection services for the active duty servicemembers and veterans with traumatic brain injuries and their beneficiaries.
Well, enough about me.
As promised, please check out these great finds related to caregiving that I have discovered along the way on my journey as a caregiver.
Information & Resources
Check out this online resource: https://caregiver.org/traumatic-brain-injury. This site has a wealth of information for you to navigate. It may be overwhelming at first, so take your time and peruse at your own leisure.
Need a support group?
Check out https://www.altsa.dshs.wa.gov/Resources/clickmap.htm
Sometimes time does not allow you to travel to a support group. Fortunately, there are online support groups through various social media. I particularly enjoy Veteran Caregiver on Facebook because I can read their status updates and comment at my own leisure and get that warm fuzzy feeling when needed. There are many others, too, and in future editions, I will be sure to share them with you.
Challenges in Caregiving, Giving Care, Taking Care-A Conference for Family Caregivers sponsored by DSHS and ALTSA, June 2, 2014; follow this link for more information: https://www.altsa.dshs.wa.gov/caregiving/documents/2014/Challenges%20in%20Caregiving%202014.pdf.
From my caregiver toolbox, I will share various tips to help you become more effective as a
caregiver. Here are two to start with:
Use a checklist to keep track of what needs to be done and remind you of what still needs to be done. Some use plain paper and pen while others use checklist templates downloaded from the internet. For those who are tech savvy, you can download checklist apps onto your phone to keep you on track.
To effectively promote clear communication and function as a caregiver, create and maintain a comprehensive file of information of the person you are caring for. Use a binder or other types of organizational tools to keep information as medical history, list of medications, emergency phone numbers, legal information and copies of legal documentation such as living will, power of attorney, insurance information, benefit information and other important pieces of information.
From time to time, I come across some books or even stories online about caregivers and their journeys. Here are two recommendations, both from the same author, Wendy Lustbader. I have personally met Ms. Lustbader and she is a dynamic speaker, whom I have had the pleasure of seeing at several different conferences I attended over the last few years. She is a nationally recognized icon in the field of aging. As an associate professor at the University of Washington and a psychotherapist, she has written several books, including Counting on Kindness, and created a video called A Prescription for Caregivers: Take Care of Yourself. Enjoy them both:
Here are two inspirational quotes to share with you. From time to time, I read quotes to help me get through the day. I trust that sharing them with you will also inspire you, too.
Every day in every way, I am getting better and better. Émile Coué
Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it. Eckhart Tolle
I am very grateful to the BEST team for honoring my request to start the Caregiver Corner as my way to give back to the TBI community. I am truly excited about this new venture and would love to have your support. Please feel free to reach out to me for any caregiver-related questions or to simply share resources that you may have come across on your journey.
And always remember, embrace the moment!
Brain injury is not an event or an outcome. It is the start of an often misdiagnosed, misunderstood, under-funded neurological disease. Individuals who sustain brain injuries must have timely access to expert trauma care, specialized rehabilitation, lifelong disease management and individualized services, and supports in order to live healthy, independent and satisfying lives.
When someone suffers a brain injury, the entire family is affected. Studies show that caregivers of people who have suffered a brain injury may experience feelings of burden, distress, anxiety, anger and depression. If you are caring for a partner, spouse, child, relative or close friend with TBI, it is important to recognize how stressful this situation can be. Information about brain injury and support can make a great difference.
Support groups are a great way to find the peer support we believe is so valuable to living a life after brain injury. Support groups are an opportunity for an individual with brain injury to establish a circle of friends, learn new strategies to meet the demands of their daily life, or simply feel that someone finally “gets it.” It’s also an opportunity for caregivers and family members to learn they are not alone either. There are others whose lives have been turned upside down and run through the wringer as a result of the changes that come with persistent challenges resulting from brain injury.
All too often, we meet caregivers who are sleep deprived, no longer eat well or exercise, have more headaches, and push themselves through their own illnesses to provide care for someone they love with a brain injury. All too often, we meet caregivers that had to give up their careers to stay home and provide care. This places an incredible strain on a caregivers health, mental well-being, and family finances beyond any loss of income that occurred due to an individual’s TBI.
If all of this sounds dramatic, it’s because it is dramatic. The need for information, resources, respite care, and support groups for caregivers and families is huge and can be hard to find and often difficult to get to when our caregiver responsibilities are in full swing. On the flip side of the same coin there is a great deal caregivers can do for themselves.
At BEST we stress that individuals with a brain injury can take control of their lives through peer support and education. They can learn new strategies and skills to help them navigate a strange new world. The same is true for caregivers. Some time ago, Brainline.org published a piece, “Choosing The Right Caregiver Support Group.” You can find that article here; https://bit.ly/1LNfXo6. The Brain Injury Association USA has a rich section of their website for caregivers; https://bit.ly/1lOsokg.
Life doesn’t just affect the individual with a brain injury. Brain injury affects everyone.