November is Caregiver Awareness Month. This past weekend, I had the opportunity to co-facilitate a support group session for caregivers. This group is so brave and compassionate. They were so happy to find others who could validate some of the things they were going through and help them feel not so alone.
Common themes emerged throughout our discussion including: coping with anger (at the disease, not their loved one), communication, helping their loved one to feel “normal,” explaining the disease and its treatment to other family and friends, taking time for oneself and setting limits.
Here are some of the “tips and tricks” we discussed:
1. Be prepared.
Many people will ask, “what can I do to help?” Often times when you hear this, you are thinking about many other things or simply respond, “we are doing fine.” I encourage caregivers to keep a list handy of things they need. For example, “could you come over on “x” day and stay with Sally while I go to a doctor’s appointment,” or “could we join you for Thanksgiving dinner?” This way, when someone asks, you are prepared and mindful of your needs and the needs of your loved one. Think of it as preparing your Oscar acceptance speech, except this is your “help acceptance speech.”
2. Be hopeful and realistic.
Your loved one may be struggling with how to adjust to life with a life altering illness while still wanting to maintain a sense of control and normalcy in their lives. Talk with your loved one about their hopes and desires for things they might like to do: from cleaning out their workshop to going on a trip to Tahiti. It is essential to know what someone is hopeful for. This will help you and your loved one prepare a realistic plan to achieve that goal. Maybe it’s getting a crew of friends together to help him clean out his workshop, or maybe it’s talking to your healthcare team to arrange treatments around a much needed vacation.
3. Don’t bottle up your emotions: even the negative ones.
It’s okay to be mad, angry, sad, disappointed, worried, anxious and nervous as a caregiver. It is equally important to direct those emotions and their energy at something OTHER than your loved one for whom you are caring. Be sure you have an outlet for these feelings. Support groups, either in person or online can be terrific venues for sharing your emotions and getting assistance.
4. Practice self-care.
This is not selfish; it is essential to your well-being. One of my favorite quotes about self care is “you cannot serve from an empty vessel.” You must go to your own medical appointments, eat regular meals, sleep, exercise, and have downtime in order to restore yourself and maintain your care giving abilities. Make this a rule, not an exception.
5. Be present.
Many caregivers describe a feeling of “waiting for the other shoe to drop.” You may find yourself anxious about test results, disease progression and life expectancy—things you have no control over. You spend countless amount of emotional energy in this space, when really you need to be present in the moment with your loved one to fully appreciate life and each other. Embrace the good minutes, hours and days. This you do have control over.
6. Communication is key.
With all of these tips and tricks, you can’t help but notice that communicating with your loved ones, with friends and other family, with your healthcare team, and with your SELF is essential to making caregiving work. If you are struggling to communicate clearly with your loved one, healthcare team, family and friends, ask for help. Social workers are skilled at helping facilitate communication and empowering you to make your needs known.
Thank you to all of those caregivers out there! You are amazing and special people who make the world a little better with even the smallest of tasks. We are lucky to have you.
Find more helpful advice and guidance in our Caregiver Section on OncoLink.
Special thanks to the Philadelphia Area Amyloidosis Support Group for their input in this blog and for the care they provide to their love ones every day.