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Cover story: The caregiver's marathon

Every day, family members cope with the challenges of caring for ailing parents and spouses

Bea Crane, 69, had a good life in New Orleans. She ran a hammock shop near the French Quarter; jazz, bistros and friends surrounded her.

Then her life drastically changed. When Hurricane Katrina hit in 2005, she survived by swimming through muddy floodwaters, which rose to the second-story stairs. Given the choice between being robbed and diving into the unknown dangers lurking in the water, "we took the water," she said.

That same year it wasn't a natural disaster but rather a familiar human concern that turned her life upside down. She came back to Palo Alto to care for her mother, Blanche Frith, who is now 101 years old. It is the caregiving, not the hurricane, that's left Crane feeling as if she's drowning.

She's not alone. Family members frequently take on the all-consuming responsibility of caregiving when loved ones age or become ill. Some care for frail parents, others for an ailing spouse. Sometimes the infirmities and attendant responsibilities arise gradually; for others, a medical emergency alters life overnight.

The task is daunting, caregivers said.

"Some days, it's a blessing to get insight into my mother. But there are times when you think you just can't handle another minute," said Crane, a perky, outgoing personality.

Roughly one third of all U.S. households provide care for a chronically ill, disabled or aged family member or friend, spending an average of 20 hours per week, according to a 2009 report by the National Alliance for Caregiving and AARP.

In Santa Clara County, roughly 24 percent of older adults report they are caregivers. That number is expected to rise dramatically as the tidal wave of Baby Boomers age, creating a so-called "Silver Tsunami."

By 2020 Santa Clara County's population of persons aged 65 and older is projected to nearly double to 428,300, according to a countywide 10-year strategic plan on the well-being of older adults.

Some families are caring for not only a spouse or older parent but also children or grandchildren. The pressures are great, caregivers said, taking their toll financially and emotionally.

Some seek respite through day care organizations such as Avenidas Rose Kleiner Center in Mountain View; others rely on family or friends to provide a day off.

"We think there are 8,000 people in our area (Palo Alto, Mountain View and Los Altos) that are caregivers," said John Sink, vice president of programs for Avenidas, a Palo Alto nonprofit organization that helps seniors and their families.

Avenidas holds four caregiver support groups per month. Two are for adult children of aging parents, and two are for spouses, said Michael Griggs, manager of social work services. Avenidas also offers individual and family caregiver consultations, employs two information-and-assistance specialists and publishes a monthly caregiver newsletter. Avenidas Village, a program that connects seniors and caregivers to services, helps aging and disabled persons to live safely and comfortably in their homes.

The nonprofit receives 500 to 600 requests a year from caregivers regarding social work services, from a quick call to full consultations, he said.

The average age of a caregiver is 63 years old, according to national statistics. About one-third are in poor health, Sink said. Often, caregivers are in denial about the status of their own health or can't afford to address their own medical issues. About half of spouse caregivers die before the person for whom they care, Griggs said.

That sobering statistic resonates with Crane.

Crane's mother "eats like a truck driver and is as big as a minute," she said. "I see the woman living to 106 or 108. She's amazing."

Crane admits she has been neglecting her own health, mainly because she doesn't have the resources to take care of herself.

"If I get sick what will happen to her?" she asked. "A doctor said to me, 'Do you have a health directive for yourself? ... You're under so much stress, you could have a heart attack.'"

Meanwhile Crane lives on $500 a month. She can't work because she gives care around the clock.

"The financial burden is horrific," she said.

Griggs isn't surprised.

"One thing that has fascinated me about this area is the level of wealth everyone expects. But underneath it, there is the level of poverty. Those people tend to end up invisible. But there are poor seniors here," he said.

Crane hasn't seen a dentist in some time because she can't afford to. She also has serious back problems.

Her mother is a tiny woman, 4-feet 10-inches tall.

"But when she goes down, she might as well weigh 400 pounds. I had to call the fire department when she fell in the bathtub," she said.

But Crane does receive some support. Recently a volunteer started coming for two hours once a week, and a woman from Pathways Home, Health & Hospice comes in to bathe and care for her mother for two hours, she said.

She also attends a monthly caregiver support group at Avenidas.

It is a "godsend," she said. "We share constantly. We laugh together; we cry together. We share the whole 9 yards."

Crane is unable to afford the fees for day care at Avenidas Rose Kleiner Center, which range from $80 to $150 per day (Medicare does not pay for services, although Medi-Cal does). She catches an hour or two for herself when she can.

"I have no social life whatsoever. She gets mad even if I leave her with someone else," Crane said.

Crane does allow herself one indulgence: occasionally getting her nails done. But she hasn't been inside a dress shop for four years.

Her daughter-in-law insists on giving her respite so that she can take time for herself, and her ex-husband has lent a hand. But Crane also cares for her 2-year-old grandson twice a week while her son and daughter-in-law work.

Many weeks, Crane gets no time for herself at all. She said she hasn't caught up on the laundry in five years.

It's not just the round-the-clock schedule that is taxing but also the fact that Crane's mother has dementia.

"There are times when I love every bit of her," Crane said, after explaining the trying emotional impact of the disease. "For the caregiver, it's like you're on a teeter-totter. You're up and down; you're up and down. One minute you think you've got it together, and then there are times you think you can't take it anymore."

---

Marc Roddin's father, Frank, also has dementia. His 85-year-old mother has physical disabilities. But she remains her husband's primary caregiver, he said.

Roddin, 61, still has much to do. He is his parents' driver and financial and medical-care manager. He worries about their future.

"I'm afraid if one were to die, what would happen to the other?" he said.

His mother could face financial problems since his father's pensions would not transfer to her, Roddin said.

Frank Roddin was diagnosed with Alzheimer's disease eight years ago. Prescribed medication has helped prolong his life. In 2009 the younger Roddin helped his parents move from Hawaii, where they had retired, to a condominium near his home. They purposely picked a place close to the Mountain View Senior Center, he said.

After learning about Avenidas and the Rose Kleiner Center the family placed Frank Roddin in day care three times per week. The payments are aided through the Veterans Administration, Marc Roddin said.

He took over his parents' finances with their consent, after discovering they were getting notices from debt collectors despite their having a comfortable income.

Roddin and his wife attend caregiver groups at Avenidas and the Alzheimer's Association. But the sessions are depressing; people talk about their loved ones' capabilities fading away, he said.

It's hard to watch his father's fragile silhouette as he slowly makes his way to the day care van, he said.

The role reversal from child to parent -- and parent to child -- is one of the most difficult parts of caregiving, Roddin said.

"Very recently I had a ramp installed," he said. His mother was laboriously negotiating a single step up and down into their ground-floor condominium.

"They are fighting me. They view it as, 'I'm not a handicapped person.' I say, 'Hey, Mom, you're going to fall one of these days and break a hip, and then you will be handicapped,'" he said. "We still have a continuing dialog on this subject."

The issue is particularly poignant given that he knows he will become his parents' decision-maker one day.

"At some point it has to happen. It's a little trickier. This ramp is the first example," he said.

Roddin also wants his parents to receive some household help. But his mother, a child of the Great Depression, is concerned about spending money that took a lifetime to accumulate, he said. His parents cling to their independence and determination to take care of themselves.

The trait is typical for their generation, Sink and Griggs said.

Boomers such as Roddin, who often have a higher level of education, are willing to seek caregiving resources, Sink and Griggs said. The characteristics of each generation are marked by their experiences early in life, Sink said. Those differences can create difficulty in getting help when it is needed and cause frictions between the caregiver and the parent, they said.

But a different set of circumstances arises when one is caring for a spouse, they said. Recently, Griggs counseled two people who placed spouses in care facilities.

"It's very profound to put a person they have loved and shared a bed with for 60 years in a care facility," he said.

---

Marlene Sleek never expected to care long-term for her husband, Tom, 77. But she became his caregiver in 2004, when he began to suffer from Lewy body dementia. The disease causes abnormal round structures -- called Lewy bodies -- to develop in regions of the brain. Thinking and movement degenerate, and sometimes the sufferer hallucinates.

A former administrator at Lockheed, Sleek said she always considered herself a problem solver. But she soon realized she was not going to fix anything in this situation. Her goal became giving her husband the best quality of life, she said.

"You don't want to recognize that anybody you love dearly has something going on that you can't take care of," she said last week at Avenidas on Bryant Street.

Sleek was also a caregiver to her parents, she said.

"Spousal care is very different than taking care of parents. You anticipate your parents will die before you -- you do not anticipate that with your spouse. It affects your goals and what you share.

"In most marriages there is this separation of duties. You suddenly are now responsible for everything. The role-playing totally changes. My husband was a strong, robust guy. Even he would say, 'I should be doing that.' A lot of the physical stuff goes away," she said.

Caring for a spouse often brings feelings of loneliness and guilt, she said.

"You are a couple but can no longer partake socially as you once did. And so (you) are isolated from friends and events that were once part of your life. You also can no longer communicate as partners or share thoughts and plans together. The spouse is often all alone even when you are together," she said.

But Sleek said she hasn't been "left alone." She has support from professionals, her church, family and friends.

She has two dear friends whose husbands suffer from Lewy body dementia, she said.

"We have held each other up. I don't know how people without someone to turn to make it. Faith and attitude is what's getting me through. I have to feel that there's a reason and purpose from this. If not for Tom and I then that someone out there is going to be touched by this," she said.

Four years ago she took her first trip without Tom. She went to her niece's wedding in Mendocino. Sleek said she felt "horrid guilt" leaving him behind with a hired care group.

"None of this is comfortable for you," she said.

Sleek got Tom into a respite program at the VA Menlo Park campus. The program allows caregivers to even go away for a week, and fees are on a sliding scale, she said.

"That saved my life," she added.

Tom could go three days a week. But the first time he left in an Outreach car, Sleek wasn't sure she could handle the sense of loss.

"Then I shut the front door and went, 'Ahhh.' It was so I could just get my head together, so I could deal with all of the things I didn't have time for, like the grandkids' birthdays," she said.

Recognizing and accepting that one can't do it all -- what Sleek called "The Super-Cinderella Principle" -- is an important step caregivers must take, she said. But it doesn't take the pain away.

"Someone said to me, 'You'll get your life back. Wrong. I'll get my life back when my husband calls and says, 'I just got off the 18th, and why don't we go out to dinner tonight?'" she said.

A social worker at the VA and staff at Avenidas helped Sleek find a care facility when the time came. It is very expensive, which is frightening, and the couple didn't have long-term-care insurance, Sleek said.

She grew quiet.

"It was a very difficult decision to make -- it was the right decision to make.

"I hate it," she said.

---

Sometimes caregiving comes straight out of left field. When Ted Dolton had a stroke in March 2011, his and his wife's lives changed instantly, Cathy Dolton said.

"It all comes on suddenly. Your life just turns around. You put aside your former life, and that becomes your focus," she said.

The couple had been social and active. He was a birder, and she loved wildflowers. They volunteered at Filoli and went hiking; they attended concerts and plays.

"Then it just had to stop," she said.

After the stroke, Ted needed 24-hour care at home. But he is making progress with his rehabilitation, and he can do many things outside the home. Caregiving doesn't always mean the end of a loved one's life. It is often part of the rehabilitative process, she said.

Dolton now takes Ted to Rose Kleiner three times each week. He socializes and works on improving his physical strength. The couple takes walks in their Palo Alto neighborhood, stopping to chat with neighbors.

"There is a noticeable change in my life, but I've been able to deal with it. I have a whole new set of challenges that have energized me in many ways. We just really love spending time together and doing the therapies at home," she said.

The Doltons are members of Avenidas Village, an online community that links people together to share resources within their neighborhood. Avenidas Village recommends services to help people "age in place" at home. A young woman comes to the Dolton's home two times each week through a local home-care agency.

"I don't think I could've done this by myself. If you have to, you have to -- but it would be exhausting. This is the hardest job I've ever had in my life because of the demands on you," she said.

Dolton cooks and shops and keeps track of Ted's medicines. And she is watchful -- always on the alert. Their family is close, but Dolton, 74, said their children live an hour away. Both are working and married with children.

Even with help, the day-to-day grind of caring for a loved one builds. Thinking about their lives now, Dolton's eyes moistened.

No matter what's happening, "there's always 14 things to do," she said.

But she said she has learned the critical step of taking time, however scarce, for herself.

"I just give myself treats," she said recently while in the cafe/bar at Il Fornaio in downtown Palo Alto. "I come here and get a cup of tea and minestrone, and I feel relaxed and pampered here."

The space is quiet yet near people. Dolton gets a chance to rest her mind and to think about things other than caregiving, she said.

Sometimes she goes shopping or sits quietly and reads. One recent day she stopped to watch the courtship dance of two mourning doves in the backyard.

If there is a silver lining to caregiving, it is in human kindness, she said.

Griggs said sometimes such hardship brings people together. There are the siblings who rally around an ailing parent, or the sister one hardly spoke to who suddenly pitches in. The neighbor drops newspapers on the doorstep, or the volunteer comes to help clean the kitchen.

"These are called angels that come into your life," Sleek said.

Dolton agreed.

"I've learned to appreciate the kindness of people that comes from unexpected places. I've learned a lot about the caregiving side of our society," she said.

Comments

 +   Like this comment
Posted by observer
a resident of another community
on Jun 15, 2012 at 10:10 am

There are a lot of other angles to aging.

One is the elderly person who lives in an unsuitable home but refuses to plan realistically for later life.

I have an extremely elderly relative who told me it is each person's responsibility to think ahead to some extent (at least, if one reaches a certain age -- let's say, 80) and PLAN for choices, options, financing of one's later part of life. This person made a choice to live in a CCRC (continuing care retirement community) which is excellent (fyi - it's not in this area) and I have stayed overnight in a guest room there and been very impressed. I could see myself living in one of their independent living apartments. This person also tells me she has "peace of mind" and this is valuable.
By contrast, some people stick their heads in the sand and absolutely refuse to plan ahead realistically and this greatly burdens their family members. I realize not everyone can afford a CCRC, so my point is more about looking ahead and getting informed. There is a lot of information around here about aging, including in the newspapers (which older people continue to read) and one can really learn a lot to prepare.


 +   Like this comment
Posted by DDee
a resident of Crescent Park
on Jun 15, 2012 at 5:36 pm

Observer,
You presume that everyone will have sufficient means to make plans other than trying to stick it out in their home. While there may be a significant percentage of people around you who can, I assure you that there are 5 times more who cannot. It reminds me of all the pundits and economists who talk about housing prices and the investment values. Newsflash... for MOST Americans, just getting into a home is a life-long commitment for at least their generation, and usually two. And so many homes, even sold in those good market times, do not raise enough to pay for a care facility. So, family is the only fallback... which, by the way, is the natural and emotionally preferable and healthy way that most of the world does it. What WE don't have any longer, is a culture that provides multiple supports and understanding for the family caregivers. If the US bishops want to focus on helping the family, they might start there and drop the rest of their antics.


 +   Like this comment
Posted by C
a resident of Fairmeadow
on Jun 15, 2012 at 5:46 pm

What I want to see in the future is the ability for people to stay in their homes with added support. When a person suffers from dementia it is extremely hard to move to a new place and start over because they have to learn everything new and it is practically impossible for them. The government should support this type of care. Also, the government should support some way of saving money for your care when you get old. And they should allow people to get genetic information about themselves without the insurance companies casting them aside because they have a marker for some disease. No one knows what triggers genes you might have in your body.


 +   Like this comment
Posted by a fan of Sue Dremman
a resident of Duveneck/St. Francis
on Jun 15, 2012 at 8:20 pm

thanks so much for this compelling story Sue.....my parents live in Michigan and the drop in housing values there has been catastrophic for older persons there. That coupled with the financial services fiasco has left many without a lot of options. Our nation is going to be really strapped for care of elders if we don't figure out some options for the future. My parents saved and lived frugally their whole lives but it's not easy.


 +   Like this comment
Posted by Raymond Lavine
a resident of another community
on Jun 16, 2012 at 10:06 am

We own property in Pescadreo.

I welcome these stories because it provides "word pictures" of what happens to those who are care givers and those who need care giving.

As we plan for retirement -- we also need to have a plan for extended care. As there are consequences with planning for retirement, there are consequences with not having a plan for care giving.

Let me put this in Plain Facts and Plan English -- care giving and how we think about care giving is changing.

It is emotional, it is physicial, and it is financial. Every quote and comment reflects what is occurring with care giving.

The facts of how much it costs in the home or in a care facility is written so often, few are paying attention or taking action to own a long term care plan.

We do not own auto, home, health, disability, and life insurance because we want something to happen to us. We own it because if something happens to us we may transfer some or most of the risk to an insurance company.

None of us enjoys paying premiums, but we are always pleased when we may transfer payments to someone else.


 +   Like this comment
Posted by Mary
a resident of another community
on Jun 19, 2012 at 5:20 pm

Are you aware that in CA you can be paid as a (family) caregiver for a family member? Also in CA you may have a friend paid and only about 22 U.S. states allow a family member or friend to be paid as a c/g via county/state programs. If state budget allows at least it is something to help so check it out. Plus other resources can come with that once you're in the door to services so to speak.....


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