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Caring for a dying relative

Wisdom from caregivers who have been there

Published: October 30, 2014 05:45 AM

Even with hospice, most caregivers are unpaid family members and friends. Providing that care can be emotionally, physically, and financially draining, we found in a survey of 200 caregivers. During the last six months of their loved one’s lives, they told us, 60 percent provided care on a daily basis; another 21 percent for three or four days a week. Their greatest stresses were balancing caregiving and work, lack of sleep and time to relax, and lack of personal time. Here are some of the lessons they passed on.

Expect major emotional and physical demands.

“I was under so much stress because you know you’re going to lose your parent whom you love very much. You’re changing your own life to be there with them, trying to take care of all their needs. I was exhausted.” — John A., 50, Arizona

Expect great rewards as well.

“Look at what you’re doing as just a gift. It’s a gift, taking care of people when they’re dying.” — Herbert R., 57, California

Ask for and accept help.

“Get a much extra help as you can. It doesn’t matter if it’s somebody doing a load of laundry, coming over and vacuuming, doing dishes, or somebody to make a run to the grocery store. Any respite means more than you can imagine.” — Mary V., 63, Missouri

Take advantage of hospice.

“Hospice will come to your home and they help with the physical needs like changing the sheets with a person in the bed. I didn’t know how to do that.” — Jean L., 64, Florida

Don’t second-guess yourself.

“We all just do the best we can, and in the end we try to make their passing as comfortable as possible.” — Mary V., 63, Missouri

Ask questions of health care providers.

“Think about them ahead of time, because when you’re in the middle of doing something, questions pop up all the time. You need to write them down.” — Jean L., 64, Florida

See our complete end-of-life coverage

Click on the photo at right to see our full report, "A Beautiful Death." It follows the end-of-life journey of Paul Scheier, a retired dentist from Buffalo, N.Y., and his family, and contains more information on how to prepare for this final passage.  

For collected resources and information for caregivers, go to ConsumerHealthChoices.org/caregiving.


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