The role of a caregiver is extremely difficult to play but it’s also crucial. Unfortunately, it is often overlooked.
Living with and caring for a brain tumor patient can be an incredibly emotional experience for both the caregiver as well as the patient. From handling a rollercoaster of emotions and frequent confusion, during diagnosis, to preparing for chemotherapy and radiation treatment, the role of a caregiver is to provide around-the-clock care and unending support.
Holding the fort and organizing everyday tasks can involve an army of caretakers – it could be an ‘army-of-one,’ consisting of a husband or wife, or an army of many; including multiple family members and friends.
In order to deal with a loved one’s diagnosis, it is important that the caregiver immerses himself/herself in the patient’s journey. Doing so will not only help him stay organized but will also help the caregivers learn what questions to ask the doctor and what expectations to keep during the treatment.
While being available for the patient is important, equally important is to take some time out to look after personal needs.
For me, becoming a caregiver for someone happened abruptly. It crept in slowly until one day I realized it had consumed our entire lives. The new job was nearly as frightening as the initial diagnosis.
However, with time, and the critical responsibilities that came along with it, I was able to dodge the emotional burnout that could’ve befallen me. Here is a small list of things I learned from my experience as a caregiver to a brain cancer patient:
1. When brain tumor treatment options seem run out…Don’t panic!
At some point during the course of a malignant brain tumor, you may seem to run out of treatment options. Supportive care should always be the main focus. Although it is easier said than done, if decisions with the highly charged emotions amongst family members are discussed and agreed upon, it can help achieve some guiding principles.
The 3 basic guiding principles mentioned above made decision-making possible for me, if not easier:
- Plan as much as you can so that the patient’s wishes are clearly stated and followed;
- If you think the most aggressive of treatments, no matter how effective, are causing more harm than good, then stopping or switching treatments should be seriously considered; and
- Be firm and ask for support when you need it. Tell those around you (bosses, spouses, other family, etc.) what you are struggling with. This will help you sort out your priorities.
Nevertheless, doctors and scientists are in constant pursuit of better treatments and ways to care for patients with brain tumors. For scientific advances, health professionals have created research studies involving volunteers, called clinical trials. Many such tests tend to focus on new treatments which are safer and better than the ones being used by experts now, evaluating drugs and establishing new approaches to radiation or surgery.
A patient may decide to be a part of clinical trials for many reasons; one of them being that a new clinical trial may be the most advanced treatment available. And successful trials will pave the way for more advanced and successful treatments in the future.
2. Having emotional and practical support is significant
You can and should ask for help at any point you feel out of your depth, upset, confused or straight up overwhelmed. These might be the situations that should propel you to seek help:
- When the patient is in pain and not responding to a prescribed pain reliever
- If the patient has become depressed
- If the patient becomes unresponsive and of worsening consciousness
Whether you are at home or the hospital, the doctor or practicing nurse should be your first port of call. If you have strong religious beliefs, you might also find it supportive to involve a religious preacher in your ongoing efforts aimed at coping, support, and understanding.
3. Changing roles can be overwhelming
My role as a caregiver never changed throughout the course of my loved one’s illness and neither will yours. After diagnosis, you may need to focus on educating yourself more about brain tumors and their respective treatments.
At another point, you may be required to help the patient deal with the side effects of the treatment. In a nutshell, your center of attention will be your patient as they go through potentially significant changes.
At first, it may seem overwhelming but you will eventually fall in the rhythm of care. After working with hundreds of caregivers of brain tumor patients, Ashley Varner, an oncology social worker, noted that a caregiver soon ends up focusing on the patient’s quality of life.
“Once families settle on a medical facility and plan of treatment, it’s often a time for caregivers to catch their breath,” she says. “After feeling fairly helpless where the patient is concerned, they are finally in a place to be proactive, whether it’s researching alternative therapies, focusing on diet and nutrition, finding a support group, or investigating home care options.”
4. What to expect in every progression
As a caregiver, it is important for you to remember that a brain cancer patient can remain stable for a while but deterioration can, unfortunetly, happen fairly quickly.
Spending more time in bed and being withdrawn to sleep is normal for a patient with brain tumor.
During the last stages, brain tumor patients can present severe symptoms due to the growing tumor or treatment side effects. It is not necessary for every individual to face all symptoms, nor does the presence of symptoms mean that the patient is nearing death. Just consult a senior doctor or clinical nurse to give you a clear picture.
5. Caring needs a break, too
We may be caretakers, but at the end of the day, we are just humans with our own individual emotional and physical needs. A break from caregiving can mean anything from daily breaks of an hour or two, to a week off. Many caregivers, as I did, feel guilty if we take time out for ourselves, but it is vital that you make time for your individual obligations.
If you have a supportive family and friends, make use of their generous offers. Do something that you wholeheartedly enjoy; indulge in activities that help you switch off and find yourself again for a while. Make this a part of your daily or weekly routine.
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You may or may not feel lost when the caring role starts. Whatever your situation, the activity takes time to adjust. While experiencing a mixture of emotions, you will also have to deal with many practical matters.
Hopefully, the personal lessons shared in this article will provide you with the support you need in challenging times.
ABOUT Audrey Throne
Audrey Throne is a mother and a professional blogger. She has completed her masters in English literature from university of Birmingham. As a blogger she wrote quite a few posts on health, technology as well as management.
Find her on Twitter: @audrey_throne.