Caregiver Stress

by Kathy Bosworth 

More than one quarter of the adult population (26.6%) has provided care for a chronically ill, disabled or aged family member or friend during the past year. Based on current data, that translates into more than 50 million people! Sixty one percent of “intense” caregivers (those providing at least 21 hours of care a week) have suffered from depression. Heavy-duty caregivers, especially spousal caregivers, do not get consistent help from other family members. One study has shown that as many as three fourths of these caregivers are “going it alone”. Is it any surprise that caregiver stress or burnout is becoming a critical issue?

Dealing with stress is not a new concept. None of us have immunity from the challenges of getting through life with the least amount of stress. Some people drink, over eat, smoke, bite their nails, yell at the cat, or retreat inside themselves when the going gets too tough. I’m sure you have your own ways of protecting yourself from the ravages of stress. I have often thought my cat has the right idea when stress enters her life. After one loud meow and an angry swish of her tail, she retreats to another room to take a nice long two-hour snooze. Bamm! The stress is gone. Unfortunately, people do not have the same luxury.

Are you caught in the web of stress while being a caregiver? In the book, "Living with Stroke," there is an interesting section on stroke stress analysis. People list nine sentences that sum up all the different ways that stress exhibits itself in families of stroke survivors. Do any of these ring a bell with you? 

  1. Panic: “Ohmigod, I can’t handle this.”
  2. Anxiety: What if he needs me in the middle of the night and I can’t hear him?”
  3. Denial that leads to over-optimism: “Oh, he’ll be fine. He just needs to come home.”
  4. Irritability and Anger: “It’s all the rehabilitation team’s fault.”
  5. Frustration: “I can’t stand one more thing going wrong!”
  6. Fatigue: “I’m utterly, completely exhausted from the experience.”
  7. Hopelessness and helplessness: “What’s the use? Nothing’s going to change.”
  8. Guilt: “How can I be so angry at him? It’s not fair.”
  9. Ambivalence: “I don’t know how I feel anymore. I can’t make a decision about anything.”

If you are a caregiver, I’m sure you find yourself nodding your head at more than a few of these stress indicators. I often say that caregiving is not something that people plan on or sign up for. It is a situation sort of plops itself in your lap totally unexpected. Caregivers are usually overwhelmed, untrained, and uneducated in the beginning. With time comes a sense of control that can help you through. Being out of control in any situation can knock a person off balance. Don’t be too hard on yourself as you muddle through this. You are a rookie now, but you are getting some heavy on the job training.

Here are some tips that I have found to be helpful in getting your life in balance again.

  1. When well-meaning people offer to help, accept their help. Be specific in things you could use help with. Now is not the time to show the world how strong you are. You will only burn out quicker without help.
  2. Watch out for signs of depression. Get professional help if you need to.
  3. Educate yourself about your loved one’s condition. Information is empowering!
  4. Trust your gut feelings. I’m a firm believer in our innate instincts. If something sounds out of whack to you, keep asking questions until you are satisfied that the best care is being administered.
  5. Find other caregivers to connect with. There are many caregiver websites and support groups. If there are none in your area, start your own. Believe me, you need somebody to talk to that understands what you are going through.
  6. Be kind to yourself. Even if you only take a ten-minute walk around the block to alleviate some stress, DO IT. A caregiver with a lower stress level makes a much better caregiver. Getting enough sleep, exercise, and eating balanced meals reduces stress.
  7. If you are caring for a parent and have siblings, be vocal about what they can do to help. Some people are not comfortable with the day-to-day care but they might be willing to grocery shop for you, pick up meds, or do a doctor’s run or two. Don’t be a martyr. Your emotional health cannot take it. Face it and get on with it.
  8. Take charge of your life and continue to do things that you find relaxing or pleasurable. If a loved one’s disability always takes center stage instead of your needs, you will become a resentful caregiver. Not good for anyone.
  9. Write down things to keep your head uncluttered. Having ongoing lists of medications your loved one is taking will not only alleviate the stress of trying to remember what and when, but it is also a valuable tool when visiting the doctor. It’s all written out and accessible. Doctor’s are often rushed and cannot wait around while you try to remember which meds are causing what side effects, etc. Keep it as simple and easy on yourself in ways that you can.
  10. Keep your sense of humor. It’s the most important tool you have and it’s free. Humor can be found in the most surprising places, even hospitals and nursing homes. Laughter is good for the soul.
  11. Know your limitations! Don’t let guilt get in the way of making the best decision for your family member and yourself. Not everyone can be a caregiver no matter how good their intentions might be. If you cannot be a caregiver due to an emotional, physical, financial or locational burden, you do have choices. You cannot help another if you yourself need help. The medical needs might warrant the need for assisted living or long term care. If you must find alternative living arrangements, make sure they are ones you can live with and serve the best interest of your loved one! Stay involved and vigilant that the care remains good.

Caregiving is a huge responsibility. Keeping the caregiver healthy; physically, mentally, and emotionally is vital. Try to find the right balance in your life that allows you to care for your loved one while caring for yourself.

Helpful websites for caregivers:

Family Caregiver Alliance:

National Family Caregivers Association:

National Alliance for Caregiving:

Empowering Caregivers:

Copyright © October 2004

The Stroke Network, Inc.

P.O. Box 492 Abingdon, Maryland 21009

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