“Never give from the depths of your well, but from your overflow.”
At 22 I decided to put my career on hold and return home to take care of my grandfather who was struggling with Parkinson’s disease and dementia. I devoted my life to his daily care, determined he would not end up in a nursing home, surrounded by strangers. He needed constant attention, especially when the dementia would take hold, causing him to have confusion and fear. I knew I could handle it, and I did with all the kindness and grace I could muster. However, I paid the price. During my lowest moments of depression, I felt alone and overwhelmed with no way out. My intention was to love and care for my dear one, yet somewhere along the way, I lost myself.
Caregiver burnout can be a serious issue. Generally, your first instinct is to help others before helping yourself. In reality, it should be the other way around—only when you help yourself first can you lovingly and effectively help others. This may feel wrong initially. Although demonstrating love and commitment to your loved ones can be rewarding on so many levels, it can also take a heavy mental and physical toll on you due to the immensely stressful demands as your role as caretaker. At the end of the day, who is taking care of you—the caregiver? As stated in this article published by Stanford Medicine, “It’s fair to say there are really two patients, the caregiver and the person who is terminally ill.”
Every so often my mind wanders back to that time many years ago spent with my grandfather, and I am a bit surprised to find that I don’t regret one moment despite the challenges. I take this time now to share not only what I learned from that experience, but what I truly believe would have helped me cope with the demands of the responsibility.
Take Responsibility for Your Well-being
You are a little speck in the universe doing the best you can. It’s impossible to have control over every little thing. The well-known Serenity Prayer offers a beautiful reminder:
“God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”
You may not be able to change a situation or other people, but you can certainly change yourself. It may sound harsh, but don’t expect people to step up and help in a way you would like. Instead, take action, no matter how small, toward fulfilling your own needs. This will make a huge positive impact on your physical and mental wellbeing. Get in the driver seat of your own life and take control, even if it’s baby steps at first.
What can you do today to start making changes? Rather than just thinking about everything you should be doing, start generating some momentum by taking some form of action. If you are having trouble getting started, notice any negative self-talk such as, “There is no way this can change” or “I never have time to myself.”
Remember, your mind believes what you tell it. Instead, get into the practice of countering with, “I know with effort and time, positive changes will happen” or “I deserve to make time for myself.” Next, begin brainstorming some ways to integrate more self-care into your life and write it down.
Tip: It’s important to set some goals. Look at your list and choose something easy. For example, “By the end of the week, I will choose an inspiring book to read.” It’s all about the little accomplishments. If scheduling more mini getaways is on your list, set a deadline to find dates that work and get it scheduled.
Honour Your Feelings
Taking care of a loved is an emotional roller coaster. One moment is full of love and devotion, the next moment is full of anger and resentment. Take a moment to think about how you handle your emotions. Do you stuff them inside? Do you ignore them? Do you scorch the earth with your words? Over time, feelings not fully experienced can accumulate as emotional toxicity, which appears as the following:
Keep in mind, before an emotion is fully expressed, it can be felt in the body first. It might be a lump in the throat or a queasy feeling in the pit of the stomach. Start to pay attention to these signals. An emotion or thought is packed with energy and information and starts at a subtle level, waiting to see what action will be taken. If no action is taken, it builds and builds, trying to let you know something is very wrong. If you catch it early, the power behind a negative emotion can be dissipated, and you can proceed with a sense of peace and higher clarity. Consider this to be an opportunity for positive change.
Never feel bad for having certain emotions or feelings. They are there for a reason, but the catch is you must actually listen to what the deeper message is telling you. Don’t get stuck in the rut of thinking you can’t do anything about it. You can! You just need to get the right track playing in your mind. Your mind listens and believes your internal dialogue, so press stop on the old track and start a new track with uplifting self-talk that promotes hope, deservedness, strength, and courage.
Tip: When experiencing a challenge, go to a quiet place. Close your eyes and place your hands, one on top of the other, over your body where you feel tension building. Take three deep breaths and imagine the tension melting away with each exhalation and then smile. It may feel silly, but smiling releases endorphins and helps to lower stress levels.
Communicate Your Needs
Caregivers are notorious for saying everything is “fine” when in fact they are not. The ability to communicate effectively with family and healthcare workers becomes essential to preventing an accumulation of emotional toxicity.
If the idea of expressing your thoughts and feelings seems daunting, you are not the only one. Where do you begin? Keep in mind that as a human being, you have fundamental needs that, when not tended to, can lead to stress. Some of these needs are: attention, affection, appreciation, and acceptance. When your needs are met, you feel:
When your needs are not met, you feel:
Get to the root of what’s causing certain feelings. For example, feelings of resentment may be caused by not being appreciated for all the work you do. Once you’ve identified some of the root causes, commit to learning the skills necessary to communicate what it is you need. Communication is like a muscle that becomes stronger with practice. After a difficult situation, ask yourself the following questions taken from the book, Nonviolent Communication by Marshall Rosenberg:
- What just happened?
- What are these feelings arising in me?
- What do I need that I’m not receiving?
- What am I asking for?
It’s ok if you don’t know the answers, just ask and observe the responses from a state of calm witnessing awareness. When finished, proceed with love and compassion.
Of course, sometimes communication skills get thrown out the window in the heat of a moment and that’s okay. Just knowing there is a tool out there to help support you is comforting to know. You deserve to be heard.
Learn Stress-Reduction Techniques
Meditate, meditate, meditate. One of the most important things you can do for yourself as a caregiver is to learn stress-reduction techniques, and meditation is one of the most accessible techniques to learn.
When your inner world is peaceful, it extends out to your outer world, taking stress levels down a few notches. With regular meditation practice, fears are overcome and challenges that seemed insurmountable are more easily resolved. Luckily, online meditation programs, such as the Primordial Sound Meditation online course, are available so you don’t have to leave home to learn. Find one that works for you.
Breathing exercises or pranayama is another powerful stress-reduction technique that only requires your attention in order to be effective. The more burdened you feel, the more your body will restrict itself—your breath becomes shallow when the opposite needs to be happening. Long, deep, life-giving breaths that bring in much needed oxygen will help circumvent stress.
Tip: Before meditation, try alternate nostril breathing known as Nadi Shodhana in the yogic tradition.
Build a Support System
Just as the person you are taking care of has a team of people for various healthcare needs, you need your own support team in place. They will be your outlet to help maintain some sanity and experience some peace in your life. Here are some examples to consider for your support team:
- Massage therapist
- Home health aide
- Caregiver support group
- Primary care doctor
Make every effort to avoid isolation as much possible. Caregivers feel more supported and strengthened when other people are present.
Tip: Schedule a monthly gathering with friends and make sure to use the time for fun only. Make it a potluck so you don’t have to cook as much. Friends want to support but often don’t know how.
Stay tuned for part two to the caregiver’s guide to self-care.