Love doesn’t conquer all: caregiver resentment and frustration

Senior Couple QuarrellingI 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.

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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.

 

5 Ways to get into the Zen of Caregiving

purity of the zen massageI have caregiver burnout. I cared for my husband, who had Alzheimer’s disease, for 10 years. Before that I flew back and forth from Colorado to Florida whenever one of my parents had a health crisis (which was frequent). My daughter just had a baby, and I’d love to be there for her, but my mother has pneumonia and congestive heart failure. I am torn between helping my daughter and her beautiful, young family, and my elderly failing mother. I am flying to Florida for a few days and then back to Colorado. And I will probably be doing this again in the coming month. I tell myself, “you need to take care of yourself. You need to keep your head above water.” Easier said than done. But I learned a lot during the course of my husband’s illness. I know how important it is to meditate, do yoga, dance and eat and sleep well.

Caregiving is a huge challenge, and it’s very easy to let the responsibility of caring for an ill friend or relative become a yoke around one’s neck. But with practice and mindfulness it can turn into a spiritual practice. How?

  1. When you wake up in the morning let your first thought be, “I’m going to have a great day. It will be filled with joy and laughter, and I will maintain equanimity.” Be grateful for your ability to see, hear, walk, and serve your loved one. Other affirmations that you might like: I will remain calm and present throughout the day. I welcome peace, trust, and acceptance into my life. I’m feeling strong and healthy today. I am a kind, compassionate caregiver.
  2. Instead of reacting with anxiety or impatience to a stressful situation or annoying behavior such as constant complaining, asking the same question repeatedly, pacing up and down the hall, stop and breathe. Take a deep breath and let it out slowly. Do it again, and again. Now stop and ask yourself how you feel? Not too bad. Stretch your arms straight up towards the ceiling. Lower them and do it again, one at a time. Roll your head gently to the right and then to the left, and then slowly in a circle. Look to your right, center and then to the left. Take another deep breath and let it out slowly. Feel your body relax.
  3. Focus on the present. Instead of worrying about taking your loved one to a doctor’s appointment and anticipating how he or she will react or what news you will hear, put your attention on something beautiful—inside your home or out the window. If the sky is blue, appreciate its beauty. Listen to the birds singing and appreciate the miracle of their song. Look at a painting on the wall and really look at the colors, the brush strokes, and the image. Imagine the spark that inspired the artist during the creative process, and let it inspire you to get through the day while maintaining a positive outlook.
  4. Light a candle and have your care partner sit down next to you. Enjoy the glow, letting it calm your nerves. Match your breathing to your care partner’s and find your peace.
  5. Keep a journal. It’s a wonderful, easy way to get your concerns, fears, hopes, and dreams out without relying on your therapist or best friend. Use a writing prompt to get you going such as “I never thought. . . . It’s so hard to . .. “I’ll always remember . . .

These are just a few things that can ease the stress of caregiving. Have courage; find strength from the simple things.

Breathe easy exercises for relaxation

The other morning I woke myself up laughing because of the ridiculous dream I was having. I was asked to write a list of what I do to relieve stress. At the top of the list I wrote “hose down the house.” Hosing down the house during the summer might be a good way to cool off, but it wouldn’t be at the top of my list of stress relievers.  It was a funny dream and an even funnier way to wake up.

But who am I to say what is the best stress reliever. If you have something that works to reground and recenter yourself, by all means do it. . . unless it harms your body or psychology, i.e. drinking, doing recreational drugs, pigging out on unhealthy foods, etc.

Here are some breathing exercises that work for me, and have worked for millions of other people.

Breathing is something most of us take for granted.  In fact, the average person breathes 1,261,440,000 (one and a quarter billion) times in a lifetime without thinking about it.  Breathing is so vital to your overall health and well being that Dr. Andrew Weil, best-selling author, educator and practicing M.D. says: “If I had to limit my advice on healthier living to just one tip, it would be simply to learn how to breathe correctly.”

Slow, deep breathing is probably the single best anti-stress medicine we have, ” says James Gordon, a clinical professor of psychiatry at the Georgetown University School of Medicine and director of the Center for Mind-Body Medicine in Washington.”  When you bring air down into the lower portion of the lungs, where oxygen exchange is most efficient, everything changes.  Heart rate slows, blood pressure decreases, muscles relax, anxiety eases and the mind calms.  Breathing this way also gives people a sense of control over their body and their emotions that is extremely therapeutic,” says Gordon.1

Most of us do not breathe correctly.  Typically our “normal” breathing is shallow. “The result is a vicious cycle, where stress prompts shallow breathing, which in turn creates more stress,” says Gordon.2

Abdominal breathing and pranyama (yoga breathing exercises) are natural, easy ways to increase your energy and feel more relaxed because they accelerate the intake of oxygen.

Abdominal Breathing

Abdominal breathing is done from the depths of the belly, rather than breathing from your chest and nose.  It is a simple method of relaxation that can be done anywhere, at any time.

  1. Sit or lie down with your hands on your stomach.
  2. Inhale slowly through your nose, filling your stomach and then your chest.  Your abdomen should rise as if you’re inflating a balloon.  Allow it to swell and return to normal.  Your chest should move only slightly.
  3. Try to get a rhythm going, counting to 4 on the in-breath and to 8 on the out-breath.
  4. Exhale as slowly as possible through slightly parted lips.
  5. Practice this for about 10 minutes.

Alternate nostril breathing (pranyama)

You’ll notice that one of the nostrils is more open than the other.  Don’t mind this, it’s normal.

  1. Close the right nostril with your thumb.
  2. Breathe in through your left nostril.
  3. Close the left nostril with your third and fourth fingers.
  4. Breathe out through your right nostril.
  5. Close the right nostril with your thumb.
  6. Breathe in through your left nostril.
  7. Repeat the entire sequence and continue for 3-5 minutes.

The effects from these breathing exercises are cumulative, so try to practice them a few minutes each day.  You’ll experience a more settled feeling immediately, and after a week or two you may realize that the mind chatter has quieted down, and that physical tension has diminished too!

  1. Krucoff, Carol. “Doctors Empowering Patients by Promoting Belly Breathing,” Washington Post, June 2000.
  2. Ibid

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