"There are four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers." Former first lady and caregiver advocate Rosalynn Carter said this, and according to a 2009 survey by the AARP, more than 42 million are in the "currently caregivers" category.
Vickie Hershberger is in this category. A health education instructor with Torrance Memorial Medical Center, she was living in New York 12 years ago when it became clear it was time to move to California to care for her mother, who had suffered a major stroke, and her aging grandmother. After her mother's second stroke, Hershberger moved her to a skilled nursing facility. Her grandmother lives semi-independently at home but needs regular check-ins.
"Long distance care, live-in care, board and care, skilled nursing-in whatever situation, I know how challenging this experience is for both the parent and the caregiver," Hershberger says.
A study by the National Alliance for Caregiving found caregivers spending 20 hours a week caring for a relative. And the figures are expected to increase. Baby Boomers are reaching senior citizen status at the rate of one every eight seconds, and at the same time, many of their parents are moving toward the end of life.
As coordinator for the hospital's Health and Healing Program, Hershberger encourages fellow caregivers to cope with the pressures of the role through meditation, therapeutic body work and other stress relievers, telling them to take time for themselves. But it's a piece of advice that's rarely heeded, and she knows that first-hand too.
"I've been there, done that-and I am currently doing that-which gives me a huge amount of compassion as well as insight into the way they (caregivers) do not take care of themselves. I try to practice what I preach, but I know from experience that it's difficult. The emphasis is always on the person being cared for, so the caregiver feels they have no right to feel exhausted, or that compared to the person they're caring for, their life is easy. But that's not the case."
Mary Jane Landrock, one of the hospital's licensed clinical social workers who also facilitates its Caregiver Support Group, agrees. "All caregivers struggle with the notion of caring for themselves-it's difficult to even get away to attend a support group," she says. "If they are caring for someone who's had a stroke or has a chronic illness or dementia, they are busy providing care. Just getting someone to and from the doctor is a major task. Your whole life becomes about going to the doctor. Caregivers must find a way to stay sane."
Landrock recommends pacing yourself and recognizing that you can't do it all. "Often the primary caregiver becomes resentful, feeling as though family members are not taking their share of responsibility," she says. "But it's important to accept what people are willing or able to give, even if it's not ideal. And reach out to extended family, friends, people at church. Try to create a caregiving team so that you have a support system-and a respite."
Sharmone La Rose teaches Caregiver Training at Torrance Adult School, held in collaboration with Torrance Memorial. She sees caregivers struggle with putting their own needs first and quotes a sobering statistic: Some 30% of caregivers will die before the person they're caring for. "People caring for Alzheimer's patients are a good example. The patient has problems with the mind working well, but the body is still healthy, so they can live for a very long time. But in the process, they wear down the caregiver."
A significant challenge for both caregiver children and their parents is the role-reversal aspect. Most aging parents don't appreciate their children telling them what to do. Coupled with the feeling of losing independence, resentments can take root.
Debra Billings and her mother, Frances, have been through this. Before Frances moved into Spring Senior Assisted Living in Torrance two months ago, her daughter had been solely responsible for her care. But after a stroke and a fall, the two had to face facts; it wasn't safe for Frances to live by herself.
"It's extremely difficult to play the role of parent with your parents," Debra says. "You want to honor and respect them, but it's also your responsibility to give them the best and make sure they are cared for. As they age, that means making decisions they may not like. My mom wants to move home and be surrounded by things that she loves, but it's not safe. As much as I want to make her happy, I have to look at the bigger picture."
Frances Billings understands her daughter's perspective and empathizes. "The strain on her bothers me," she admits. "But I've learned to accept that she is the one taking care of me now, not the other way around, and I've tried to have a better attitude. It's hard. I was an active person, and it felt like the world stopped when I became dependent on others."
Frances says finding patience and acceptance-not two of her strongest virtues-has helped her cope. So has her sense of humor. "I'm finding out what it was like for my daughter all those years when I was the boss!" she says.
She recommends that seniors in a similar situation stay upbeat and laugh a lot ("My dad taught me if you do that, you'll live longer. I'm 86, so I guess he was right."); find a new hobby or revisit an old one (she loves word circle puzzles and crocheting); stay updated on current events; keep a journal; and get outdoors as much as possible.
"I'm 19 in my head, but the rest of me is 86. I have to remember that things have changed, and mentally I have to learn how to deal. My best advice to others is to face facts and try to make your life as happy as you can. I don't like my situation-I would rather be in my own home and have my own car, but I can't. We have to accept these things."
Hershberger says she also struggled with the difficulty of switching from child to parent with her mother. She had to overcome the sadness of losing the person she knew. "My mother is not my mother anymore, and that is a huge loss," she says. "It's hard to watch someone you love suffer."
Stress also mounts for families as the financial aspect takes its toll. Those who haven't planned in advance can find themselves lost, scared and unsure of how to proceed. But this can be avoided by discussing options and finances ahead of time-something few do. Talking upfront with parents about their wishes before crisis mode hits is the best way to prepare, and the conversation-if you haven't had it yet-should happen today, experts say. Yes, it can be uncomfortable, but the alternative is worse.
Dana Hodgdon, bereavement services coordinator at Torrance Memorial, says that sometimes it's the children who fear having the conversation and the parents who want to. "Bring siblings into the discussion early and create a strategy for who's going to do what when the time comes," he says.
Debra Billings' parents always told their children they didn't want to be a burden, but specifics of their long-term care were not discussed. Luckily, she and her mother share a tight bond, which has helped keep the lines of communication open and honest as they travel this path together.
And Hershberger says she has connected more with her mother since becoming her caregiver. "As challenging as caregiving is, I wouldn't trade it. We've experienced a healing that never would've happened otherwise. We've had many conversations about her mothering, and my 'daughter-ing,' and that has brought us closer. I also didn't know my grandmother very well prior to becoming her caregiver. And she is an amazing lady! So the silver lining is that this process can and often does bring people closer together."
Unfortunately, often the first conversation about eldercare happens too late. You get the call that Mom has fallen, a series of doctor's visits follows, you realize she can no longer live alone, and you approach your siblings about next steps. Don't let this happen to you, says Torrance Memorial's Bereavement Services Coordinator Dana Hodgdon.
"Don't put off getting educated," he says. "Get as much information as possible about your options so you can make informed decisions. If you wait until there's a crisis, decisions are emotional, not logical."
Initiating a conversation about how parents wish to be cared for when they are no longer capable is not easy. But Hodgdon says to get everyone's thoughts, fears and concerns on the table anyway. "Every situation is different-family dynamics and culture play a big role-so what often happens is people are afraid to talk about it, so nobody's talking. But communication is critical."
Hodgdon suggests that parents or other family members start the dialogue by picking up an Advance Health Care Directive, a legal document that advises family of your wishes if you are incapacitated. The forms are free in the HealthLinks center at Torrance Memorial and provide the perfect conversation-starter. The hospital hosts four workshops a year focused on the Advance Directive; the next one is May 17.
Here are other tips for getting prepared for tomorrow-today:
If you are the child of an aging parent, don't be surprised if your parent isn't immediately interested in "the talk." It's not easy for parents to have the focus be on them, rather than their children. Remember, this is not a taboo subject.
Make sure there is an updated living will as well as a power of attorney (so financial decisions can be made if your loved one is not able to do so).
Have a financial plan in place; seek professional guidance if necessary. Money will be needed for any kind of custodial care. (Health insurance doesn't typically cover these costs). The costs of long-term care are staggering: According to Genworth Financial, assisted living facilities cost an average of $3,261 per month. Nursing homes with semi-private rooms are $5,790 per month; private rooms average $6,390.
Talk to your loved one about purchasing long-term care insurance if they are ineligible for low-income assistance and do not make enough money to pay out-of-pocket for home care, assisted living, a nursing home, etc. The number of Californians with long-term care insurance (just over one-half million, according to recent data) is expected to increase, thanks to legislation calling for more public awareness. But purchase it now, before there's a problem and it's needed.