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Caring for the caregiver

If you’re helping to care for a loved one with an illness or injury, you’re a “caregiver.” And you’re not alone. It’s been estimated that nearly 50 million Americans are currently caring for a family member, friend or neighbor. To provide this care, families are often thrown into the stressful situation of making changes in their own lives. If needs are long term, stress and strain on families can become overwhelming or seemingly impossible.

There are many different ways to be a caregiver, and every caregiver faces unique challenges. But there are common emotions all caregivers may experience. Anticipating and acknowledging these emotions can help reduce stress and prepare for difficult times. Typical feelings may include:

Denial: The doctors are wrong — Mom is going to get better!

Anger: Why my loved one? — this is too much to ask of me.

Sadness: It hurts to see my loved one suffer — I miss my “normal” life.

Fear: What does the future hold? — what if I do something wrong?

Helplessness: I don’t know what to do — nothing I do seems to help.

Isolation: Nobody understands — it’s all on my shoulders.

Frustration: I’m overwhelmed — I can’t manage this!

Guilt: I have no right to complain — I keep making mistakes.

Anxious: What if I can’t do this? — what if my loved one gets worse, or dies?

There is also one fundamental need of all caregivers: to care for themselves in order to effectively care for their loved one. Too often, caregivers put their own needs aside to focus on the needs of their loved one. Over time, emotions can build and intensify, leading to extreme stress which can present serious problems for caregivers. Many have experienced “burnout” because they didn’t recognize or acknowledge warning signs, so didn’t get help which could have provided emotional and practical relief. Signs of extreme stress can include:

Physical — headache, muscle aches, sleep and eating problems, frequent illness

Emotional — increasing anger, guilt, depression, anxiety, loneliness

Mental — forgetfulness, difficulty making decisions, wandering attention

Interpersonal — withdrawal, blaming, irritability, impatience, resentment

Spiritual — feelings of alienation, loss of hope, purpose and meaning

While some degree of the above feelings and symptoms are typical, there are ways to prevent them from becoming unmanageable. It’s impossible to avoid the emotions one experiences when a loved one is suffering and some practical problems can’t easily be resolved. However, there are ways to cope and regain some measure of control.

  • Embrace change. Work to change things you can. Accept things you can’t change.
  • Become informed about your loved one’s condition and what to expect. Ask questions. Take notes during medical visits.
  • Get organized. Keep current information — medical history, medications, allergies, phone numbers, calendar of all appointments.
  • Prioritize responsibilities. Focus on most important tasks first. It’s OK if some tasks don’t get done as
  • you intended.
  • Encourage your loved one’s independence when appropriate, but don’t push too hard.
  • Talk with your loved one but also listen! Discuss their wishes regarding health care, legal matters, etc.
  • Talk openly with other family about how everyone can help. Express feelings and frustrations before they become resentments and conflicts.
  • Learn about resources that might help.
  • Ask for and accept help from family and friends. Make suggestions when asked “how can I help?” Let one person be the contact and organizer of help.
  • Make time for yourself. Relax. Do “normal” activities.
  • Don’t neglect your own physical health and needs.
  • Seek support from other caregivers — group, individually, online.
  • Try to keep your sense of humor. Laugh together when possible

Holidays present added challenges for caregivers. How to celebrate when a loved one is suffering? How to make extra preparations when time is already stretched? Planning and special precautions can help you make the most of special occasions. Allow yourself to say “no” to tasks or invitations you can’t manage. Try not to feel guilty. Ask for help. Consider new, non-traditional activities that won’t stress you or your loved one. Acknowledge your feelings and adjust your expectations of yourself, your loved one, and others.

No matter how well you care for your loved one and yourself, there may be times when you feel you could have done better or even that you’ve failed. Try not to blame yourself. Focus on the things you’ve done well, and keep a sense of humor if you make mistakes. Yours is a true labor of love, and your efforts are appreciated. Caregiving is challenging and demanding, but can also be very rewarding! Recognize this as a special opportunity for you and your loved one to connect in very special, even life-changing, ways.

Judy Humphries, CMSW, OSW-C, is the patient navigator at the Marion Shepard Cancer Center in Washington. For more information, contact her at 252-974-9393 or judy.humphries@vidanthealth.com.