A tense caregiving relationship can be difficult for everyone involved.
Although the focus often is on the person with ALS, sometimes caregivers also need help dealing with their feelings and learning new skills, including how to ask for help from others, says Elizabeth Etigson, a licensed professional clinical counselor who facilitates the MDA/ALS support group in Albuquerque, N.M., and has a private practice, Purple Turtle Counseling.
Below are some tips for addressing common complaints from caregivers and improving the caregiver/care receiver relationship.
“I can’t do everything myself!”
Caregivers often feel overwhelmed and as if everyone is pulling them in different directions, Etigson says.
One solution is better organization. Hold regular meetings to discuss what tasks need to be done and assign a variety of people to do them — family members, friends, neighbors, hired professionals and acquaintances who have offered to help. If a task must be done by the caregiver, can someone else pick up one of the caregiver’s other responsibilities? Be ready to reach for the task list whenever people say, “Let me know if there’s anything I can do to help.”
“I never have time for myself!”
If caregivers don’t take time off every now and then, resentment can start to build and may spill over onto their loved ones. To avoid burnout, caregivers must learn to take periods of time for themselves, whether it’s a weekend away or short breaks to get a massage, go to the gym, take a nap, phone a friend, walk the mall or read a book.
Sometimes caregivers feel guilty about being away from their loved ones, so they put their own needs aside. Care receivers must address these feelings of guilt, urges Etigson, and let caregivers know they want them to take breaks and ask for help when needed.
“What happens if I get hurt?”
Many caregivers worry about the possibility of hurting themselves, especially during transfers, and not being able to care for their loved ones any longer. This concern needs to be addressed before problems arise, especially as caregivers age.
Again, getting some help is a good way to solve this problem. Another solution is to have occupational therapists evaluate transfers and suggest ways to make them safer, says Etigson. Patient lifts (like a Hoyer lift) take the risk and physical strain out of transfers. For their own well-being, all caregivers should consider using lifts for transfers. Care receivers can help by being willing to accept this different form of transfer.
“I don’t feel appreciated!”
Sometimes discomfort or bad days make it hard for care receivers to show gratitude. But it’s important to let caregivers know that their hard work hasn’t gone unnoticed.
Never underestimate the value of a smile and a “thank you.” Etigson also suggests writing a letter of appreciation or simply acknowledging the situation in a humorous way: “‘I know I’m a pain in the butt sometimes, and I really thank you for hanging in there with me.’”