I came across an article today that I felt said a great deal about what it's like to be the caregiver for a family member that is faced with a brain tumor. Even though it was written about Alzheimer patients and their caregivers, it very clearly expresses what the caregivers of brain tumor (especially GBM, or glioblastoma multiforme) patients experience as well.
"Family caregivers assisting a person with deteriorating brain functions experience several common emotions during the middle to later stages of this disease. The person closest to the ill person may feel guilt for past misunderstandings that can not be resolved now, sadness as he no longer sees his loved one showing the recognition of his presence that accompanied their earlier relationship, sadness as each ability to care for themselves is diminished.
The family caregiver moves through stages of denial, anger at the "roll of the dice" that made their loved one vulnerable to this disease, questioning of their faith, anxiety about his future and his ability to deal with the challenges ahead, fear of the financial burden caused by long term care and embarrassment over changing behaviors of the ill person.
Support group meetings offer families an opportunity to express these concerns in a safe environment where other caregivers will understand and perhaps offer hope for the future...a changed family dynamic where people make adjustments in their roles, find sources of strength, accept the physical and mental losses that accompany this disease and know that they are not alone."
Here's the link to the story.
There is such a storm of emotions that you experience on a daily basis. So many changes in daily routines that need to be addressed, doctor appointments, medications that need to be administered, prescriptions that need to be filled, medical forms and releases to be filled out, insurance statements to organize and medical bills to pay ... and then the added stress of taking care of the needs of children and other family members. Keeping extended family and friends updated on the condition of your loved one, maintaining a presence at your job (since you are now the breadwinner of the family, and disability payments don't kick in for 6 months after the diagnosis), etc. It's overwhelming, to say the least.
I can only look back, from the vantage point of 3+ years later, and say that I could not have done what I had to do without God's help. The sensation of being "carried" through that period of time is one that lives in my memory. Not that I and my family weren't experiencing all that was happening to us and around us - we most certainly felt the heartbreak and confusion of dealing with all that GBM's can dish out as they tear through the brain - but even when things seemed the worst, there was the sense of unseen support.
If you are struggling with issues as a caregiver, make sure that you surround yourself with a support team for yourself. You will need to have people that you can call on; whether that's to talk to over a cup of coffee, come and stay with your loved one while you run to the story or the pharmacy, pick your child up from school or take them to soccer, etc. Sometimes it difficult to talk openly to people about what is happening in your family and in your life at this time. But it's very important that you take advantage of your resources, in order to keep yourself from burning out.
You owe it to your loved one to be the best caregiver that you can be for them. You are stronger than you realize, but remember that you don't have to go it alone!
