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Fighting Alzheimer's

Debt of Gratitude: Repaying Our Nation’s Caregivers

While any caregiving situation can be stressful, caring for a loved one with Alzheimer’s is a particularly daunting task. The problems with memory, thinking, and behavior — which eventually become severe enough to affect work, lifelong hobbies, and social life — make Alzheimer’s disease an especially challenging scenario for family caregivers.

Who are family caregivers?           

Caregiver Action Network’s Alzheimer’s disease Family Caregiver Survey looked at who these Alzheimer’s family caregivers are and found out what challenges they face. The survey showed that the average Alzheimer’s family caregiver is a married 52-year-old woman caring for a parent or in-law for more than four years.

But the survey also revealed some surprising statistics about Alzheimer’s caregivers. For instance, there are 1 million younger Americans (between ages 18 and 29) who are family caregivers, mostly caring for grandparents with Alzheimer’s.

Measuring sacrifices

The amount of time spent caregiving is enormous. On average, the most-involved family caregivers of Alzheimer’s patients spend 43 percent of their time providing care. When you consider that most of those caregivers are already working full- or part-time, their caregiving role really does become a second full-time job, leaving very little spare time.

No wonder that so many caregivers report neglecting other aspects of their lives as a result of their caregiving responsibility, such as staying home from work or school (46 percent); skipping the gym or exercising (52 percent) or neglecting other personal or family obligations (65 percent).

Improve communication

The majority of Alzheimer’s family caregivers are not getting the stress relief they need from their support networks, and many are seeking information on how to be a more effective caregiver and ways they can better communicate with family and friends about the patient. Some tips to improve communication are:

With your loved one

  • Talk slowly and speak in a calm and reassuring tone. Maintain eye contact and use positive reinforcements, such as a smile or gentle touch, to put your loved one at ease.
  • Remember to ask one question at a time. Try using signals, such as gestures, in addition to your words, to start communication.
  • Although it may be frustrating, be sure to allow your loved one to communicate their thoughts — be careful not to interrupt, criticize, or correct too quickly.

With the doctor

  • Before you go to a doctor’s appointment, write down your questions and the thoughts you want to share. Daily records of your loved one’s ability to function independently, both mentally and physically, can be helpful at these meetings.
  • Educate yourself by asking the doctor about treatment options that are available for every stage of the disease.
  • Try to set aside any frustration stemming from your situation with Alzheimer’s disease. Recognize that your doctor may not have answers to all of your questions, but he or she is there to support you.
  • Familiarize yourself and your loved one with the doctor’s staff and office, so your loved one feels safe there.

With family, friends, and other support networks

  • Your family, friends, and neighbors may not know what you are going through. If you do not feel comfortable discussing your loved one’s condition with others, ask another family member, or perhaps a member of your faith community, to talk about it on your behalf. You do not have to do this alone.
  • Teach others how to communicate with your loved one. Share tips you have learned and methods that work best.
  • Speak up for the rights of all family caregivers in your community by talking about the need for education, financial suppor, and better illness care.

Take care of yourself

  • Protect your health. Recognize that taking care of yourself is just as important as taking care of your loved one.
  • Caregiving is mentally, emotionally and physically draining. If you feel your own health and well-being are suffering as a result, be sure to talk to your doctor.
  • Schedule brief periods of rest or breaks often. Respite is not a luxury. You need regular breaks in order to stay healthy and strong.
  • Join a support group. It can be a safe haven for sharing feelings, a place to make new friends and a place to receive information and resources on how to deal with what lies ahead.

Ask for help 

  • Recognize that asking for help is a sign of strength, not weakness. Get comfortable with the idea of talking about your need for assistance and reach out to someone you trust for help.
  • Recognize your own strengths and limitations to help assess when you need assistance.
  • Create a list of tasks that need to get done.
  • Hold family meetings to review the needs of your loved one and divide the responsibilities.
  • Reviewing individual responsibilities is a good way to engage others to share the burden of caregiving.
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