I recently participated in a caregiver symposium. I spoke to dozens of caregivers who expressed fatigue, frustration, and exasperation. Everyone was stressed and stretched to the limit. I detected little joy. Instead, people appeared resentful. “I didn’t sign up for this,” one man said. Another confided, “I read your book and am taking your advice. I will not let my wife’s illness ruin my life.”
Caregiving only goes one way: it gets harder. And when we don’t really like the person we are caring for or if we feel trapped, it is even more challenging. I was only 48 years old when my beloved husband was diagnosed with Alzheimer’s disease. I knew our lives would never be the same again. . . and they weren’t.
Yes, we had joy. Our young adult children graduated from college and got married. We went on a few trips. We had some funny moments that elicited belly laughs. But the emotions I remember most are the heaviness of grief, despair, depression, guilt, and fear. I didn’t feel resentment, I think, because I have a philosophical outlook that we reap what we sow (as in the law of karma), and that somewhere, somehow in a past life beyond the ethers I had signed up for my caregiving duty. I tried to put on a happy face. But I told my closest friends that I was exhausted and stressed.
I felt shame that after decades of practicing Transcendental Meditation and following a healthy vegetarian lifestyle our lives had come to this. Wasn’t life supposed to be blissful and free of stress? I soon realized that no one gets out of here without going through at least one huge, transformative challenge. Mine was caregiving for my life partner, who was unable to hep me make the big decisions such as finding a smaller house because ours had become unmanageable, or finding a memory care home for him when I wasn’t able to continue physically caring for him.
Guilt? Yes, I still feel guilt even though my therapist often said to me “If a friend told you what you just told me, what would you say to her?”
“I would tell her ‘you are doing the best that you can.'” And I did do the best I could for my husband. I took him to healers and doctors and gave him nutritional supplements that been shown to help support cognition and memory.
But I still feel guilt about running away every chance I got to dance or have lunch with a friend, even though I know I needed the relief time in order to stay healthy and strong so I could carry out my caregiving duties.
When all is said and done, if you are not exactly thrilled about giving countless hours to someone you love or to someone you are obligated to care for because there is no one else, you might as well learn how to be the best caregiver possible. Because when your caregiving is over, you will have another chance to live the life you chose for yourself. So give it your best shot. Here are some ways to ease the burden and to help you feel good about yourself and the person you are caring for.
Lighten the load of caregiving
- Take care of yourself first. Carve out time every day to go for a walk, do yoga, dance, sing, whatever it takes to help you feel better.
- Join a support group. I don’t know how I would have maintained my sanity if I hadn’t joined the younger-onset Alzheimer’s support group offered by the Alzheimer’s Association.
- See a therapist. Mine was a god-send who listened with compassion and gave excellent advice.
- Sign up for community services such as day programs, senior centers, Meals on Wheels, hotlines, etc.
- Hire someone to take your “care partner” (the person you care for) out for lunch, to the movies, for a visit to a museum, etc.
- Ask your friends and neighbors for help mowing the lawn, retrieving the mail, sitting with your “care partner “so you can do errands, etc.
- Talk to family members and make a plan to share the responsibilities. (more on this in another blog post)
- Make an appointment with an elder attorney to draw up a contract for you to receive wages, find out how to get social security withheld, etc.
- Breathe! After I buried my husband I realized that I hadn’t fully breathed in years. I was tight, my lungs were tight and I was holding my breath waiting for the next next emergency to occur.
Here’s an excerpt from my book Calmer Waters: The Caregiver’s Journey Through Alzheimer’s and Dementia about breath work, including a simple exercise. Follow the directions for breathing in order to release stress and feel more energized.
by Reverend Shanthi Behl (excerpted from Calmer Waters)
Breath work is the first and easiest to start with. We can deliberately extend, shorten, retain, and otherwise direct the air we breathe in a variety of ways in order to guide the prana. Second, is the mechanism of directed attention, also known as our intention. Where our thoughts go, our prana goes. An integrated pranayama practice utilizes both the breath and our focused attention.
When we say we are tired and have no energy, what we are really saying is that our energy is blocked. We need to breathe to live, and how we breathe can profoundly affect our degree of physical well-being; it can regulate our emotions, and it can deplete, sustain, or increase our experience of aliveness. Prana is constantly fluctuating and moving throughout the universe. According to yoga philosophy, it flows throughout the living body in exquisitely determined whirlpools and currents. The wonderment of the yogic system is asana and pranayama practice which allows our innate energy currents to flow as nature intended.
The following instructions are for sitting, but you can practice this exercise while standing in mountain pose.
• Sit up tall, lengthen the spine, and place the feet flat on the floor. Press the feet into the ground, even as you press the top of the head toward the ceiling.
Relax the hands lightly on the lap and release the shoulders down away from the ears.
• Soften the belly muscles. As you breathe in through the nose, lengthen through the crown of the head.
• As you breathe out through the nose, release the shoulders and press your feet into the floor.
• Continue this practice and turn your awareness to sensations along the spinal column. Feel the upward flow as you breathe in and the downward flow as you breathe out. It is perfectly fine if you feel the opposite movement. The important aspect is to tune into a sense of any movement along the spine. You may not initially feel the movement of your energy. However, by first imagining it, you will later actually feel the upward and downward flows of energy along sushumna, the central core of energy.