After 42 years of marriage, your husband develops Alzheimer's. Or your mom suffers a debilitating stroke. You've gone from companion or child to full-time caregiver. And the map for this particular journey isn't always easy to follow. If you can find it.
"Almost the greatest challenge is that people get hit with a bit of bad news, or reach a crisis point in a deteriorating situation, and they don't know where to go for help although in our community, we are blessed with massive amounts of help for people. But they are not making the connections they need," says Helen Rollins, director of the LDS Hospital Spirit of Caring program and coordinator of bereavement services for Intermountain Healthcare's urban central region.
Aging issues, from taking care of yourself as you get older, to medical treatments and how to be a caregiver, will be covered in today's Deseret Morning News/Intermountain Healthcare Hotline. From 10 a.m. to noon, Rollins and Kip DeWeese, a geriatric nurse practitioner at LDS Hospital, will take phoned-in questions.
The best place for a caregiver to start is with the physician. "And don't forget the staff. They get asked these questions as much as physicians themselves," Rollins says.
Each county in Utah has an Area Agency on Aging that provides services and answers. Many also have a referral program that can help you find alternative housing or figure out what insurance to buy or where to get home-delivered meals.
People in stress often forget their closest resource: friends and neighbors. It's not a popular topic, so it doesn't easily get discussed. But Rollins points out that there are, for instance, 92 different hospices in Salt Lake and many, many nursing homes. "But there's not one that says, 'We have a little weakness in that area.' A family that used a service will give you a balanced answer."
Resource booklets like "55 Plus" are widely available.
Support groups can offer great information and comfort, Rollins says. The referral and aging agencies can help you find them. Many are disease-specific, and their names reflect it, so they're easy to find in the phone book. "If you can get a phone book and a kind person on the end of the line, you can start this process," Rollins says.
The amount of information available on the Web is impressive.
The hardest part is the "grinding exhaustion of caregiving. Add to that an already busy life and in seeps guilt, in seeps doubt," Rollins says. People question themselves and whether they're doing the right thing, why they are tired or discouraged or even angry. Society may praise you, she says, but there are times when it won't feel heroic, it will be hard. And the emotions that come with that are natural.
"Grief is an overlooked aspect of caregiving. The grief begins when you take that responsibility. You are already losing a loved one who is changing before your eyes and beginning to understand what's ahead of you. "
And when an individual dies, there's another, sometimes unexpected loss a full-time job that, no matter how hard or easy it was, helped define your life at that point.
Dedication and love can actually complicate things, because "you think you should and can do it all. You can't. And you shouldn't. But it gets all wrapped up in emotional attachment for another. Call county caregiver services and let them send out a stranger a professional who is knowledgeable and can point out what you need and what they can provide.
"So many times, people are more willing to accept help from a stranger than from a daughter. And when they do, the daughter can reorganize her life."
That may simply bring the ability to find moments of respite, a walk, a day out, the laundry done. But it helps.The outcome of caregiving is never one you want, Rollins cautions, because it ends with a death of someone you have loved. But the journey can be rewarding and satisfying.