SALT LAKE CITY — Amy Weyrich's mother has Alzheimer's disease and she lives on the other side of the country.
Her son Sam, 11, has a myelin disorder so rare that there are only 40 known cases. His body is attacking the coating on his nerves, but medical science doesn't know why. He cannot speak. He requires a wheelchair and needs assistance with eating, dressing and toileting.
While her brothers handle the brunt of their mother's caregiving, Weyrich pitches in when she can. That means flying cross-country with Sam.
"It's hard when you have them on either side of the spectrum," Weyrich said of her mother's and son's caregiving needs.
Weyrich never envisioned that her life would revolve around caregiving. But it becomes a reality for most people as their parents and spouses age, she said.
"It's pretty much taken over our lives. But it's a lot better now than when he was a small child. He was unhappy with life then," she said.
"Life is much better now, or we've just figured out how to handle it better."
Caregiving presents many challenges. In the rigor of just getting through the day or past the latest emergency, many caregivers give short shrift to taking care of themselves and attending to their own needs.
To some degree, self-care is one the most challenging aspects of caregiving. Many people learn the hard way why such care is important, Weyrich said.
"You kind of figure out you need to get out do something. You get your friends to rally around you and get you through those bumpy times," she said.
A number of community resources are available, too. On Wednesday, the Utah Coalition for Caregiver Support and Utah Hospice & Palliative Care Organization will present a caregiving conference starting at 8 a.m. at the Larry H. Miller Campus of Salt Lake Community College, 9750 S. 300 West. The conference is free, but there is a $5 charge for lunch.
Dr. Raymond Moody, an author and expert on grieving, will speak on "Surviving Grief — Finding Hope."
Breakout sessions on topics such as preventing caregiver stress and providing for a special needs child also will be offered.
Jodi Hansen of Eagle Mountain, whose 11-year-old son has cerebral palsy and cystic fibrosis, said the daily grind of caregiving can be overwhelming at times.
"Sometimes the situation is difficult, but caring for him is so easy because I love him so much," she said.
As for taking time out for herself, "Often times I'm too tired to do it."
But her husband will insist that she take a break, she said.
"My husband has literally pushed me out the door. I have some great friends. He'll call them and say 'You need get my wife out of the house. Right now!'"
Christine Evans of Tooele said she, too, relies on the support of friends. She and Hansen met in the intensive care unit of Primary Children's Hospital when their children were babies. They've been close friends ever since.
Evans' twins were born 24 weeks into her pregnancy. Her daughter Camryn, now 11, survived but her twin died. Camryn has cerebral palsy and other issues related to her premature birth. She also requires a wheelchair and full-time care.
Like Hansen, Evans said it can be difficult to leave her home for a night out. But once the children are down for the night, she and her husband make a point of enjoying some time alone.
While Evans' family largely handles Camryn's in-home care on their own, some of the greatest challenges occur when they go into the community or attempt to visit other people's homes.
Most people's home are not accessible. There are times that Camryn does not have the stamina to endure a lengthy trip away from home.
"We just try to do the best we can. We have to say 'Our family comes first.' That's just what we have to do."
E-mail: marjorie@desnews.com