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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.
"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
"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
"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
"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
"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
"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
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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