Let’s get one thing clear…ALL CANCERS SUCK! However, brain cancer, is in a league all by itself! Brain cancer is a thief to both the body AND the mind. The effects of this disease are widespread and can be felt deeply. The realities of brain cancer are hard to accept and crushing to observe. Brain cancer causes brain deterioration, cognitive deficits, mood disruption, memory loss, confusion, motor difficulties, speech arrest, and the ugly list goes on. It tries to rob the person of the very essence of who they are and how they connect to the world around them! Because of the powerful punch this disease delivers, brain cancer caregiver burnout is very real. The physical, mental, emotional and spiritual strain that a caregiver experiences can be debilitating. The nature of this disease weighs heavily on both the patient and the caregiver. Brain cancer caregiver burnout is a widely experienced part of the brain cancer journey. However, it greatly impacts the effectiveness of our care that we give to our loved ones.
How Do I Know?
Brain cancer entered my world in January 2014 when my 57 year old Mom was diagnosed with Glioblastoma. Needless to say, it rocked our world! Becoming a brain cancer caregiver was not something I was prepared for. Much of what I have learned has come through personal experience and from connections made within the brain tumor community. So much of this brain cancer journey is highly individualistic. It is difficult to find two cases that are exactly alike. We learn so much just from living with it on a day to day basis. One lesson you learn right out of the gates is that no one day will ever look or feel the same! That is something I wish someone had told me from the very beginning! (Maybe they did and I missed the memo!)
Because my family and I DETEST statistics, I am not going to write about them. I know what they are (I’m not in denial) but I refuse to allow them to define my Mom’s journey or yours! So, if you would like more statistical information on Glioblastoma, hop on over to the American Brain Tumor Association to read more about the statistics that plague our brain cancer community.
Blessings of Long Term Survival
I would be remiss if I didn’t mention how incredibly blessed my family has been on this brain cancer journey. My mom is considered to be a long term survivor and has lived with glioblastoma brain cancer just short of five years. That is truly miraculous! The majority of families are not as fortunate. Our road has not been smooth sailing by any stretch of the imagination, but comparatively, we have been given tremendous gifts along the way that I will NEVER take for granted.
Hardships of Long Term Survival
My family’s experience will glioblastoma brain cancer may look differently than many other journeys, but we have begun to experience our own difficulties. As the unpredictability and progression of the disease lurks in the wings, it is difficult to get comfortable and settle in. Just when you think you have made one step forward, it seems as if you then take 3 giant leaps backward. That is the new “normal” nature of living with this reality. When things begin to break down, physically, mentally or emotionally, the effects can be felt by the patient, the caregiver and the entire family unit. These heartbreaking realities do not discriminate.
Brain Cancer Caregiver Burnout
Brain Cancer Caregiver burnout occurs when physical, mental, emotional, and spiritual stress are maintained over an extended period of time. At first, the effects can be incredibly subtle, almost non- existent. But, slowly over time, they can creep in and rear their ugly heads! Trust me, I have personally experienced both the slow, subtle creep and the abrupt sneak attack!
When you are caregiving for someone you love that has brain cancer, you tend to put your needs on the back burner. It’s not something you intend to allow. But due to the ever changing, volatile nature of this disease, life becomes very reactionary. You try so hard to mentally and physically prepare. However, despite your best attempts, no amount of preparation will ever be able to predict every “what if” scenario. This alone is mentally and physically exhausting!
Over time, I found myself doing just what needed to be done in that moment, without taking into consideration the long term effects of such decisions. Time is not usually something we have the luxury of when living with brain cancer. Managing brain cancer side effects alone can become a full- time job.
Signs of Brain Cancer Burnout
I must admit to you, there are days when I feel like I am the one with brain cancer. My memory routinely fails me. I have spontaneous aches and pains. Waking up irritable and inpatient is not uncommon. I toss and turn, sometimes until 3 a.m. I feel like a stranger in my own body and mind. Sometimes, I look in the mirror and wonder whose reflection is staring back at me. Caregiving has settled in and the visible effects are becoming quite obvious. Some are more evident than others. The most painful caregiving wounds occur at the heart level and go unnoticed by most people. Caregivers often suffer in silence.
Have you experienced any of the following brain cancer caregiver burnout symptoms?
- Interruption of sleep patterns
- Severe mood swings
- Difficulty remembering
- Concentration Difficulties
- Strained interpersonal relationships
- Lack of energy
- Loss of interest in normal activities/ socializing
- Irrational Reactions
- Physical Symptoms aka psychosomatic symptoms (unexplainable pain, exhaustion, headaches, stomach aches, etc)
What to Do to Ease the Effects of Brain Cancer Caregiver Burnout
Commit to caring for your own health (I know, you are sick of hearing this):
How many times a week do you hear this from well-intentioned loved ones? It’s annoying, right? A bath, a walk, meditation. It all sounds great…but how can we find time to make these things happen?
Please understand, I get it. It seems nearly impossible to take care of our loved ones and to take care of our own needs. However, if we do not find ways to incorporate self -care into our daily routines, we will burn out quickly! We will not be able to effectively give and manage care for anyone. Our loved ones need us! Not just our loved ones with brain cancer but our spouses and our children.
Establish Healthy Habits and New Coping Mechanisms:
Just as we care for the habits of our children and our loved ones, we must also give time and attention to our habits. Make sure you are making healthy choices that will fill you and fuel you, not drain you further. Establishing new coping mechanisms along your caregiving journey may be necessary to respond to changing circumstances.
Build a Support Network for Yourself:
As a caregiver, it is critical that you have people in your inner circle that you can call on to support you and your needs. Oftentimes, our loved one has a larger support network ready and willing to help. But, the needs of the caregiver are often overlooked and not prioritized. Find your people that will be there when you need them.
Don’t be Afraid to Ask for Help:
People want to help but often do not know how. Be specific in your requests for help. Never be afraid to ask. Look at it as being a sign of strength, never weakness.
Set Realistic Goals & Expectations:
You are one person. Even though you think the world and everything in it depends on you, it doesn’t! Have realistic goals for yourself and for your loved one. Be reasonable with your expectations and don’t place too much pressure on yourself or your loved one. Practice giving and receiving copious amounts of GRACE.
Set Boundaries & Learn to Say No:
Boundaries are healthy and they are biblical. Learn to protect yourself, your time and your responsibilities by setting realistic boundaries. Saying “no,” is difficult for many people. As a natural people pleaser, this is where I run in to trouble. Learn how to simply, yet confidently say “no” to certain things so you can in turn say “yes” to the best things.
Professional counseling can be very beneficial for caregivers. Having a neutral party to talk to and talk through circumstances with is very helpful and healing.
Importance of Prayer and Christian Community:
Having prayer support in your life as a brain cancer caregiver is powerful. Personal prayer and communal prayer have been a vital life line for my spirit throughout my brain cancer caregiving journey. Inviting the Lord into our everyday struggles and asking him to meet our every need will put power back into the hands where it belongs.
How In Tandem Caregiving Helps Ease the Burden of Brain Cancer Caregiver Burnout
Giving care to our loved ones is a blessing and a privilege. However, brain cancer caregiver burnout is a concern and a realistic part of this journey. There are many things about our loved one’s cancer that we cannot control. To ensure our loved ones are receiving the best care possible from us, we must do what we can to protect ourselves and our role as caregivers. Assess your needs routinely and make changes accordingly. Remember, resist the urge to isolate yourself. Reach out to others and make your needs known. Some of the best help is found in the most unexpected places. Be open about your own thoughts, feelings and frustrations. Don’t stuff your emotions. Find prayerful and supportive people to confide in and keep lines of communication open. In Tandem caregiving is best done with God at the helm and a supportive community by your side.