Here are some valuable suggestions from former patients and families for caregivers:
Make an active choice to take charge of your life. Do not let the illness define who you are.
Sometimes crying is part of being strong.
Try not to put your life on hold. Continue to meet with friends, participate in hobbies or activities, and maintain as “normal” a schedule as possible in order to keep you energized and less likely to feel isolated, lonely, and/or burned out.
Be good to yourself. Self care is not a luxury; it’s a necessity! If you intend to be a caregiver for your family member over the long term, it is essential to make and take time away for yourself with the assistance of friends and family as necessary.
Take care of your own physical, emotional, and spiritual health. As a caregiver for a person with a life-threatening illness, you participate in the journey as well. Recognizing this is the first step to good self-care.
Learn to recognize when you are stressed and identify your stress “triggers.” Learn and practice relaxation techniques. Deep breathing, visualization, meditation, and physical exercise can all be helpful for reducing stress. Please see the BMT social worker for more information on this.
Keep an eye on your consumption of alcohol and/or recreational drugs. You may feel “relaxed” in the short run, but they are depressants.
Learn to recognize the common signs of depression and seek professional help if you think you (or other members of the care giving team) are depressed. Signs include:
Constant sadness, anxiety or emptiness
Changes in sleep patterns. This can be too much sleep or not enough sleep.
Changes in eating habits resulting in unwanted weight gain or loss
Loss of interest in people and/or activities that you once enjoyed
Becoming easily agitated, angered, or irritable
Feeling tired and/or exhausted all the time
Overwhelming feelings of guilt, hopelessness or worthlessness
Thoughts of death or suicide, or attempting suicide
Get your financial and family affairs in order. This may include preparing Wills, Powers of Attorney, DNR, Advanced Directives, etc.
Don’t do it all yourself! Seek, request, accept and if necessary, demand offers of help and be ready with suggestions, even if you are not used to doing any of this.
Educate yourself and be informed. Ask questions of the health care team and establish your caregiver role with the team. Learn as much as you can about your care recipient’s medical condition and the available community supports and resources. Knowledge is power.
Trust your instincts. They’re usually right!
Acknowledge and grieve the many losses that accompany a life-threatening illness, but don’t forget to dream your dreams.
Stand up for your rights as a caregiver. Honour your care giving role. Give yourself the credit and positive reinforcement/encouragement you deserve. Remember that the care that you provide does make a significant difference!
Have someone you can talk to. Seek support from other caregivers and professionals and develop a personalized support system. Consider participating in a support group.
Learn to say “NO”. Set limits as to your ability to provide care and be realistic in your planning and goals. Set priorities and learn and practice time and stress management techniques.
Consider keeping a journal on a regular basis. You can write down your thoughts about care giving, your hopes and dreams, disappointments and frustrations.
Don’t underestimate the value of maintaining a good sense of humour and perspective. Remember that you can plan all you like, but you can’t control everything. Laugh, regroup, and make the best of it.