There are so many ways you can help make a difference in the lives of patients and families today.
“Being a caregiver is hard.
But being a caregiver to someone affected by a brain tumour is so much harder.”
Caregivers have questions, fears and feelings of helplessness when someone they care about is diagnosed with a brain tumour.
When you, as a caregiver, take good care of yourself, you can take better care of the patient!
On this page, you will find multiple ways that you as a caregiver can get support to better assist the person affected by a brain tumour.
This new resource, developed by caregivers and health care professionals is designed to assist the person caring for someone affected by a brain tumour. Although the Caregiver Handbook does not provide all the answers, we hope that it will give you hope, and let you know that you are not alone. We also hope that the personal stories and practical suggestions it contains will help you take care of the person with a brain tumour that you are caring for.
When you, as a caregiver, take good care of yourself, you can take better care of the patient!
There are two virtual support groups that meet online once a month, just for caregivers.
You are welcome to join whichever group fits best with your schedule.
You are also welcome to join one of our in-person support groups that are held year-round across Canada.
In these online groups you will gain access to an active group of Canadian brain tumour patients, survivors, parents and other caregivers who will be asking questions, answering your questions and sharing stories of hope and support.
These events are typically held in different cities across Canada each year. Three events took place in 2019 (Calgary, Halifax and Montreal).
Watch this space for more details on our next event.
If you are the caregiver of a child with a brain tumour in Quebec, British Columbia, Alberta or Southwestern Ontario, please also reference Pediatric and Family Support.
“You have a brain tumour”… five words that can bring an overwhelming sense of anxiety, fear and bewilderment. Certainly, this is the case for the individual with the brain tumour, but also for their loved ones.
After the initial diagnosis, the focus is on the patient’s needs, treatment and other decisions. But as the caregiver, you need to ensure that your needs are given priority too because it’s important for the patient that their caregivers are also well cared for. The primary caregiver may often feel overwhelmed with doctor’s visits and treatment sessions, resulting in missed time at work and contributing to a growing sense of loss of control.
Don’t be afraid to ask for help and accept help when it is offered. If there are things you need from your health care team, let them know. Additional support services may exist that you aren’t aware of.
Caregivers also need to have someone to talk to about their feeling and emotions. Sharing your fears and concerns with someone you feel comfortable talking to can be very helpful in supporting your emotional health and maintaining your overall wellbeing. Some caregivers have found other ways to reduce stress like journaling, yoga or art therapy.
Caring for your own physical needs is also important. Eating properly, resting and regular moderate exercise will help maintain your stamina.
As a caregiver to someone living with a brain tumour, your physical, emotional and psychological well-being is as important as that of your patient. Ensuring that you keep well throughout this journey will mean an enhanced quality of life for everyone in the family.
I have the right to…take care of my own health, spirit, and relationships.
I have the right to…seek help from others even though my loved one may object. Only I can recognize the limits of my endurance and strength.
I have the right to…accept help that is offered to me by others.
I have the right to…receive consideration, affection, forgiveness, and acceptance for what I achieve as a caregiver and offer these qualities in return.
I have the right to…get angry, be depressed, and express other difficult feelings occasionally.
I have the right to…take pride in what I accomplish, and to applaud the courage it takes sometimes to meet the needs of my loved one.
I have the right to…protect my individuality and the right to make a life for myself that will sustain me in the time when my care-receiver no longer needs my full-time help.
I have the right to…expect and demand increased awareness and support to find resources to aid me in caring for my loved one.
I have the right to…maintain facets of my life that do not include the person I care for, just as I would if he / she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.
Having open communication with the neuro-oncology or neuroscience medical team at the hospital is important in making informed decisions about health care decisions. It is not uncommon to feel nervous or only hear part of what is said at a doctor’s appointment or hear information differently from someone else.
It can also be a challenge to get answers to all your questions at one doctor’s appointment. Consequently, it is a good idea to go with your loved one diagnosed with a brain tumour, and / or ask a family member or friend to attend with you and your loved one to medical appointments so they can take notes.
Knowing what to ask is also important, and the following suggested questions are meant for you and your family to think about and discuss with various members of your medical team. You are also encouraged to ask additional questions that are important to you.
When someone asks, “How can I help?” or “Let me know how I can help?” consider printing this list off to give to your friend, family member, neighbour or colleague who offers to help. Alternatively, you can create your own list that is personal to you and your loved one.
Sometimes it’s difficult to think of tasks or ways to help when asked on the spot – this list takes that responsibility away from you as the caregiver and offers your supportive network concrete ways to help:
Tip to friends and family who want to help: Offer your time. Be very specific with your offering (i.e.) “I am all yours from 9:00 am – 11:00 am on Saturdays” or “I can walk your dog every day at 4:00 pm when I get home from work.
Helping your child or teen understand a brain tumour diagnosis can help him / her / her cope better with treatment. It is important to tell your child / teen about a brain tumour diagnosis and answer questions honestly and with straightforward terms. If you do not give your child / teen the facts in words they can understand, he will be left to imagine what is going to happen. These thoughts can often be scarier than the truth.
The ideas in the PDF below may help you talk with your child / teen about a brain tumour diagnosis. We suggest that you use the word “tumour” openly. It will help him / her be more familiar with the word and more at ease when asking questions.
Being a caregiver of a loved one with a brain tumour is no easy feat. Many caregivers experience challenges, emotions and life situations that are new to them. It is critical that caregivers take care of themselves. Below are some suggestions for the caregiver to do just that.
1. Ask for help – “Realize that sometimes it’s ok to ask for help from others around” – anonymous caregiver of a brain tumour patient
Trying to do all the caregiver responsibilities on your own will undoubtedly end in burnout. Reach out for support around you; even the best and most loving caregivers need help from others. Family members, friends, health care professionals, volunteers and respite services are all available choices for help. Be realistic and honest with yourself about how much time you can give, and then communicate this with your support system. Accept help from others when it is offered to you.
2. Acknowledge and accept your feelings
As a caregiver, you may experience many feelings that are new and difficult. Frustration, anger, depression, fear, guilt, resentment, worry and feeling overwhelmed are all normal and common emotions experienced by caregivers. Accept and allow yourself to feel the way that you are, as long as it does not compromise the well-being of the one being cared for.
3. Talk about your feelings – “It’s really important to find and have your own support system, like friends and/or family, who you feel comfortable to talk openly about your feelings and emotions…or vent when necessary!”- anonymous caregiver of a brain tumour patient
Confide in others about the feelings, challenges and successes you experience being a caregiver. Don’t keep your emotions bottled up; talk with at least one other person. Find a local caregiver support network, speak with trusted family members and/or friends, consider seeing a counsellor or therapist. You can also go to any of the Brain Tumour Support Groups located across Canada. For more information, explore Brain Tumour Foundation of Canada’s support services or contact our support services team at 1-800-265-5106.
4. Knowledge is power
Learn as much as you can about the effects, treatment and needs of your loved one’s brain tumour and gain information about being a caregiver. The more you know, the more effective you will be in caring for your loved one and the more satisfied you will be about the quality job you have completed. Speak with your health care team, other caregivers and read informative books. You can also order our Pediatric, Adult and Caregiver Handbooks.
5. Take time for yourself –“Don’t feel guilty for taking time for yourself! I know for me it took a while to realize I was actually being a better caregiver when I still take ‘me’ time” – anonymous caregiver of a brain tumour patient
When you are a caregiver it’s very important to take time for yourself. You owe it to yourself for the great care you provide to your loved one. Take short breaks often, take longer breaks or mini-vacations and do something that rewards your hard work and effort. When you do take breaks, try to stay away and not engage in activities related to your caregiver role. Without these breaks you may not have the emotional or physical strength to handle the extra stress or demands you experience.
6. Take care of your physical health
Eat healthy, exercise regularly, rest and relax. Caregivers often experience extra pressure and stress. Taking care of your physical health will ensure you have the energy to care for your loved one. Maintain your regular health check-ups and see your doctor if you are experiencing physical or emotional difficulties.
7. Recognize the signs of caregiver burnout
As a caregiver, if you experience “burnout” it is no longer a healthy or productive situation for you or the care receiver. Here are some warning signs that you may be experiencing caregiver burnout:
Caring for a loved one can be very rewarding, but it also involves many stressful challenges such as changes in the family dynamic, household disruption, financial pressure, and the added workload. It makes sense that caregivers are some of the people most prone to burnout.
For people caring for brain tumour patients, caregiver stress can be particularly damaging since it can be a chronic, long-term issue. With patients surviving longer today due to advances in brain tumour treatments, you may face many years of caregiving responsibilities. Without adequate help and support, the stress of caregiving can leave you vulnerable to a wide range of physical and emotional problems.
When caregiver stress and burnout puts your own health at risk, it affects your ability to provide care to the patient. This can be detrimental to both you and the person you’re caring for. It is important to recognize that caregivers need care too. Managing the stress levels in your own life is just as important as making sure your family member is comfortable, gets to their doctor’s appointments regularly or takes their medication on time.
Learning to recognize the signs of caregiver stress and burnout is the first step to dealing with the problem.
Burnout is a state of emotional, mental and physical exhaustion caused by excessive and prolonged stress. Burnout usually happens when you feel overwhelmed and unable to meet constant demands.
Once you burnout caregiving is no longer a healthy option for either you or the person you are caring for. Therefore, it is important to watch for the warning signs of caregiver stress and burnout and make it a priority to take action right away once you recognize the problem.
Hear from patients and caregivers about their experience on the brain tumour journey.