The Caregiving Role

Strategy: How to Face New Challenges

As you well know, the caregiving role can be all-encompassing. As Alzheimer’s disease progresses, you will likely face new challenges each day, possibly each hour, and your loved one will rely on you more and more. Some general rules of thumb can help prepare you to successfully meet these challenges.

  • Educate yourself about the disease. Read books, watch educational DVDs, attend workshops and consult with healthcare professionals.
  • Reach out for care. Obtain assistance from national organizations, such as the Alzheimer’s Foundation of America, and local resources, including AFA’s member organizations across the nation. Services include counseling, education and a host of programs and services that can meet the needs of you and your loved one.  
  • Learn caregiving techniques. Key areas are communication skills, safety concerns, and managing behavioral challenges and activities of daily living.
  • Understand the experience of your loved one. Adjust your expectations. Be patient and kind.
  • Avoid caregiver burnout. Make time for yourself. Join caregiver support groups. Pursue interests beyond your caregiving role, such as exercise, hobbies, journaling and art.
  • Maintain your own physical and mental health. Exercise, respite and other activities can reduce stress. Seek medical help if there are signs of depression.
  • Discuss the situation with family and friends. Support systems are critical.
  • Do cognitive stimulation activities with your loved one. Listening to music, word puzzles and memory games can easily be done at home.
  • Foster communication with physicians. Be involved in your loved one's medical care. Ask questions about the progression of the disease, express concerns and discuss treatment options.
  • Take care of financial, legal and long-term care planning issues. Try to involve your loved one in decision-making, if they are still capable of providing input, and consider their wishes related to future care and end-of-life issues.
  • Kindness, humor and creativity are essential parts of caregiving. Hugs, hand massage and other gentle physical contact will help your loved one feel connected and loved.
  • Think positive. Focus on your loved one's remaining strengths and enjoy your relationship while you are still able to.

FAQ (to AFA’s social services team)

FAQ: Long-Distance Caregiving

Q. I live in a different state from my parents. How can I help my mother care for my father from a distance?

A. As a long-distance caregiver, you’re not alone. According to the National Institute on Aging, approximately seven million Americans are long-distance caregivers, mostly caring for aging relatives living more than one hour away. You, like them, are vital members of the care team. By being proactive, you can contribute substantially to a loved one’s care.

From a practical standpoint, you can glean information about Alzheimer’s disease—from the Internet, books, etc. Since your mom is bogged down with daily caregiving responsibilities, you can boil down the essentials and share with her, for example, points about the progression of the disease and treatment options. You can also learn about community resources in their area.

In addition, assess your skills to see how you can be of the best service from afar. Should you be talking to the doctors, monitoring bank accounts or interviewing professional caregivers?

As well, help arrange on the ground support for your mom. Are there other family members and friends nearby who can pitch in? Is there a friendly visitor program or church volunteers? Formal caregiving circles and Web-based private group care calendars in which family, friends and others coordinate who will do what and when are one of the latest trends in care management.

Financially, perhaps you can alleviate some of the toll by offering to assist with the costs of medication, in-home care or adult day programs. Find out for your mom about financial grants for respite care, medications, medical equipment, etc.

In addition, make sure you find time to physically be there. Schedule vacation time to visit your parents to objectively check out the situation, including ensuring that the home is safe-proof for your dad and observing your mom’s physical and mental well-being. Become familiar with the Family and Medical Leave Act and consider taking unpaid or paid leave for a specific time to share the care with your mom.

One of the greatest gifts you can give someone is to act as an emotional anchor. Let your mother express her feelings and concerns. Validate her experience as a caregiver and remind her how lucky your dad is to have someone like her caring for him. Encourage her to take time for herself so that she doesn’t burnout.

Lastly, you can also be a big help by ensuring that you deal with your own emotions that arise from long-distance caregiving. Guilt and frustration are common. You might want to join a support group for adult children, chat online with other long-distance caregivers or seek professional help. Stay strong so you can be a source of strength—even if it is across the miles.