A diagnosis of blood cancer dramatically affects the lives of families and all others who have a relationship with the patient. The patient and the entire family will experience an emotional, physical and, possibly, financial impact. Both patient and caregiver usually need to rearrange daily activities to some degree - changes that may not come easily.
Family caregivers are a vital extension of the healthcare team. Blood cancers are often treated on an outpatient basis, leaving the responsibility of the details of patient management to a caregiver.
Caregiving often starts gradually with tasks such as driving to medical appointments, shopping for groceries and housecleaning. Over time, this can even lead to round-the-clock care, which can feel overwhelming. Your tasks may grow to include feeding, bathing, supervising medications, arranging medical care and managing financial and legal affairs.
Am I A Caregiver?
You are if you're caring for a loved one with a blood cancer who can no longer manage on his or her own. You are if you're helping your loved one with daily needs, such as bathing or dressing, balancing the cheque book and taking him or her to the doctor's office or the grocery store. You may be a son or a daughter, a husband or a wife, an in-law, a neighbour or a close friend. You may live together or next door, across the province or across the country.
If you're providing regular assistance, you are a caregiver.
Care for the Caregiver
As a caregiver, you need as much information and support as the person with cancer does. After all, if you sacrifice your own health and well-being, you won't be at your best to effectively care for a loved one.
With careful planning, good self-care and knowledge of available help, your job can be less stressful. The Leukemia & Lymphoma Society of Canada (LLSC) offers a wide range of programs that help both patients and caregivers.
Follow these suggestions so you don't feel overwhelmed and can be at your best to help your loved one:
- Acknowledge that an adult loved one has the right to make decisions about his or her life. Respect that right unless your loved one is no longer capable of making decisions or could put others in danger through his or her behaviour.
- Whenever possible, offer choices. The ability to make choices is a basic freedom, so provide choices whenever possible — from where to live to which cereal to eat at breakfast to what to wear. Choices enable us to express ourselves. As your loved one's options become more limited, due to health losses, financial constraints or social losses, you have to work harder to provide choices.
- Do only those things your loved one can't do. If your loved one is still capable of performing certain activities, such as paying bills or cooking meals, encourage him or her to do so. Helping your loved one maintain a feeling of independence will make him or her feel better about being in a care-receiving situation.
- Be sure to do what you promise to do. Many care recipients find it emotionally difficult to depend on others, and many worry about being a burden. With all these mixed feelings, your loved one needs to be able to rely on you. Do what you promise. Remember that your loved one needs you, even if he or she doesn't say so.
- Take care of yourself. Caregivers often exhaust themselves by trying to handle caregiving responsibilities on top of normal daily routines. Providing care for a loved one while holding down a job can lead to exhaustion. If you do become exhausted, you're more likely to make bad decisions or to take your frustrations out on your loved one. Take care of yourself. Take time out to do things you enjoy even if it means saying no to your loved one. Caregivers who refresh themselves can be there for the long haul. Ask your loved one's doctor to suggest local resources such as adult day care services that can give you some relief from responsibilities that may feel overwhelming.
- Remember that your family is your first resource. There can be deep emotional currents when a loved one becomes ill. Some family members will want to do everything, while others will do very little unless they're asked. Yet, spouses, brothers and sisters, children and other relatives can do much to ease your caregiving burden. Don't be afraid to reach out to them for help.
You Are Not Alone
Caregiving can be a lonely experience. Caregivers often don't feel they should be seeking support for themselves, but the best way to care for a loved one is to care for yourself.
There are several ways to reach out to others who are in similar situations or have recently been through a similar experience. LLSC offers a number of helpful resources. For more information about any of the services listed below, call an Information Specialists at (800) 955-4572.
Patti Robinson Kaufmann First Connection Program
First Connection is a telephone support program that links you with a trained peer volunteer who has experienced a similar situation. Anyone with a blood-related cancer, as well as caregivers, is eligible to receive a call or visit. There is no charge for this program.
LLS Blood Cancer Discussion Boards
Meet your peers online and share thoughts and experiences on our Blood Cancer Discussion Boards.
Family Support Groups
LLSC's Family Support Group program is open to patients, family members and caregivers. Volunteer nurses and social workers professionally lead the groups. Contact the office nearest you to find out about Family Support Groups in your area.
Caregivers often become the primary "researchers" for disease information and support in an effort to assist the person with cancer and to help him or her better understand the disease, treatment options and side effects.
LLSC offers free materials and services designed to simplify this search for information and support. Review our Patient and Caregiver Resources or contact an LLS Information Specialist at (800) 955-4572.
Be good to yourself! Caregiving is a difficult job. To continue doing your job well, you must take care of yourself. Visit CancerCare for additional caregiver information.