By: Rachel Wallace 
After my mother had a stroke, I longed to take care of her.  I was sure I was up to the challenge.  After all, how hard could it be?  I moved her in to live with me and was her primary caregiver for more than five years.  I learned it was harder than I thought.  I learned I needed help.  I learned I needed to take care of myself.  I wished that I had had a mentor…someone who would have given me insight and encouragement.  But as I learned and made mistakes, I found and gathered people around me to help me.  I hope that some of these pointers will help you, as caregiver, take care of your family member and take care of yourself.

The most important thing I learned is that caregiving is rewarding, but stressful.  For most caregivers, being there when a loved one needs you is a core value and something you wish to provide.  Many family members who are actively caring for another often don’t identify as a “caregiver.” When you become a caregiver, there is a shift in roles.  You become more than just a spouse or child. You step into a role that encompasses much more that those roles and you experience a loss of the role and relationship you had with their loved one before the illness. It becomes easy to see yourself as more a caregiver than wife/husband/parent or child. It helps to talk about family events and news about children and grandchildren. Look at family photos together. Change your daily routines periodically by taking a day trip, adding candles to the dinner table, or putting on their favorite music. Making the effort to retain the relationship you have had with your loved one will help you in coping with the multitude of changes caregiving poses.

Emotions become involved when caregiving and it is natural to feel angry, frustrated, exhausted, alone or sad. Caregiver stress, the emotional and physical stress of caregiving, is common. The following are tips that I learned along my way to make things easier for the caregiver:

  1. Learn as much as you can about your family member’s illness or disability. The more you know, the less anxiety you’ll feel about your new role and the more effective you’ll be.
  1. Seek out other caregivers and support groups. It’s comforting to know that you’re not alone and to give and receive support from others who understand what you’re going through.
  1. Trust your instincts. Remember, you know your family member best. Don’t ignore what doctors and specialists tell you, but listen to your gut, too.
  1. Encourage your loved one’s independence. Caregiving does not mean doing everything for your loved one. Be open to technologies and strategies that allow your family member to be as independent as possible. This will relieve both your stress and theirs.
  1. Organize!
  • Organize medical information so it’s up to date and easy to find.
  • Make sure legal documents are in order.
  • Keep records of medical appointments, test results, medications, dosages, symptoms, side effects, questions, and names and numbers for resources.
  • Ask for an insurance case manager to help manage insurance concerns (what is covered, how to handle insurance issues, and find home care).
  • Determine financial status. Knowing the financial status of the patient can help guide future health care choices.
  1. Know yourself and your limits. Be realistic about how much of your time and yourself you can give. Set clear limits. Communicate those limits to doctors, family members, and other people involved. Learn to recognize your strengths and weaknesses as a caregiver which will allow you to set boundaries and know when to ask for help.
  1. Recognize that you are going to have anxiety, worry, anger, resentment, guilt and grief. Don’t beat yourself up over these emotions or your doubts and misgivings. These feelings don’t mean that you don’t love your family member. They simply mean you’re human. Don’t keep your emotions bottled up.  Find at least one person you trust to confide in.
  1. Be proactive. Take charge and plan as much as possible to prevent last-minute emergencies. This can also help provide a sense of control and order.
  1. You can’t do everything on your own. You need help from friends, siblings, and other family members, as well as health professionals. If you don’t get the support you need, you’ll quickly burn out which will compromise your ability to provide care. It’s not always easy to ask for help, even when you desperately need it. But if you simply make your needs known, you will find other friends and family members who want to help, but don’t know how.
  1. Calm, relaxed caregiving can bring pleasure to both you. By taking the time each day to really connect with the person you’re caring for can release hormones that boost your mood, reduce stress, and trigger biological changes that improve physical health for both of you.
  1. Even if you do not provide all of the physical care, learning how to provide proper physical care can reduce your stress and keep you prepared.
  1. Take time to relax daily. Learn how to regulate yourself and de-stress when you start to feel overwhelmed.
  1. Feed your spirit. Pray, meditate, create art, take walks or do another activity that makes you feel part of something greater.
  • Talk with someone to make sense of your situation and your feelings.
  • Keep a journal.
  • Watch for signs of depression, anxiety, or burnout Get professional help if needed.
  • Stay social and be with other people. Don’t let yourself become isolated.
  • Do things you enjoy.
  • Maintain balance in your life. Try to keep activities that are important to you.
  • Give yourself regular breaks from caregiving, and give yourself an extended break at least once a week.
  • Join or reestablish your connection to a religious group, social club, or civic organization. The broader your support network, the better.
  1. Watch your health.
  • Exercise regularly. Try to get in at least 30 minutes of exercise, 3 times per week to relieve stress and boost your energy.
  • Eat right. Take your vitamins.
  • Avoid alcohol and drugs. They can compromise the quality of your caregiving which leads to greater stress.
  • Try to get enough sleep or your energy level, productivity, and ability to handle stress will suffer.
  • Keep up with your own health care. Go to the doctor and dentist on schedule. Keep up with your own prescriptions or medical therapy.
  1. Take advantage of other services that may be available in your community (adult day care, home health aides, home-delivered meals, respite care, errand service, transportation services, and skilled nursing). Reach out to find these services.
  • Call your local senior center, county service, family services, or hospital social work unit for contact suggestions.
  • Contact your local Area Agency on Aging for help with caring for older family members.
  • If you are caring for a veteran, home health care coverage, financial support, nursing home care, and adult day care benefits may be available.
  • Check with family member’s affiliations. Fraternal organizations (Elks, Eagles, or Moose) may offer some assistance if your loved one is a member.
  • Many communities offer free or low-cost transportation services for trips to and from medical appointments, day care, senior centers, and shopping malls.
  • Consider adult day care which can provide you with needed breaks during the day or week, and your loved one with some valuable diversions and activities.
  • Personal care services can help with activities of daily living, such as dressing, medication reminders, bathing, feeding, or meal.
  • Trained professionals such as physical or occupational therapists, social workers, or home health nurses can provide some services at home.
  • Meal programs. Your loved one may be eligible to have hot meals delivered by a Meals on Wheels program. Contact your local senior center.

Remember that caregiving is a team effort by family members, friends, volunteers, and the health care team. Try to stay positive. And give yourself credit for doing the best you can in one of the toughest jobs there is!

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