Alzheimer's hurts caregivers


By KRISTI EATON

VIEW ON HEALTH

Rick Lauber initially thought little of his father's forgetfulness.

His father, John Lauber, had always been a little absentminded, he said, and with the distance between them -- Rick Lauber was in Alberta, Canada, while his parents lived in British Columbia -- he wasn't around as often. But then Rick said he started noticing things when he would visit.

"When I visited, I recall Dad being slightly more forgetful than before," Lauber said. "He would misplace his keys, share the same stories, rely more on his pocket notepad for personal reminders and disregard shoulder-checking while driving."

From there, John Lauber, who was in his 60s at this time, began the slow progression into Alzheimer's disease, a form of dementia that affects memory, thinking and behavior.

John progressed through the three stages of the disease -- early, mid-level and advanced -- and became more and more dependent on others to take care of him, Rick Lauber said.

"Throughout the progression, I felt quite helpless ... without any cure for [Alzheimer's disease] yet, I could only watch," he said.

As his father's caregiver, Rick Lauber said he had to undertake several unexpected responsibilities, like moving him three times in his dad's final years, shuttling him to and from doctor's appointments, paying bills and becoming his father's Joint Guardian and Alternate Trustee.

"As an adult child and a family caregiver, caring for Dad had to one of the hardest things imaginable," Rick Lauber said. "Watching him decline from a healthy, active, respected academic to a shell of a man was very challenging. Dad was changing before my eyes and I could not do anything about this."

However, caring for his sick father also had its rewards, he said. In 2004, John Lauber died at the age of 76 from Alzheimer's disease. But before that, Rick said the disease changed his father because it helped him become less guarded, and he was finally able to see his father for the quiet, gracious and generous man he was.

According to the 2011 annual Facts and Figures release from the Alzheimer's Association, close to 15 million Americans offer unpaid care and support for Alzheimer's and dementia patients like Rick Lauber did for his father.

They provide 17 billion hours of unpaid care worth $202 billion, according to the report.

In Nevada, the number of unpaid caregivers increased to more than 126,000 in 2010 -- up from 75,000 in 2008.

As the number of Alzheimer's patients is expected to increase over the next several decades, so too will the number of caregivers. Currently, more than 5 million Americans suffer from the disease that does not yet have a cure.

The Alzheimer's Association estimates that by the year 2025, 42,000 people in Nevada will suffer from Alzheimer's disease -- a 100 percent increase since the year 2000.

For Sandie Glass, watching her mother, Muriel McLaren, forget how to do basic things like cooking or using a toaster was difficult.

"She couldn't be left alone and needed help with bathing and taking her medications, although she still could make her bed and dress herself," she said.

Glass said being a caregiver to a parent is a lot like going through the stages of grief.

"It usually is connected to the loss of a parent and it's like you find yourself coming full circle because it's going to end in death," she said. "My stages included Discovery, Fighter instinct, Role reversal, Love and Acceptance, Appreciation for the times together, (and) Deep Loss."

Muriel didn't think she needed help, Glass, of Mason, Ohio, said, but the strain of being a caregiver affected her marriage.

More than 60 percent of caregivers report high levels of stress and 33 percent report feelings of depression, according to the Alzheimer's Association.

"My husband and I didn't have much alone time together," Glass said, adding that her daughter, Karen, was helpful in caring for her grandmother.

"A few days a week I would drop my mom off at a senior center for people with Alzheimer's and other medical needs, and my daughter Karen would pick her up on the way home from school and they would have sing-alongs in the car on the way home," she said. "Karen would stay with her until one of us got home from work."

Like Karen, Sonja Hegman was younger when she began her time as a caregiver.

She was in her early teens when her mother, Bernice Hegman, was diagnosed with the disease. By her 50th birthday, Bernice was so confused that it took her two hours to open her birthday presents, Sonja said.

Sonja remained involved at school but tried to help with her mother's care as much as possible -- bathing her and feeding her, for example.

Across America, 200,000 kids ages 8 to 18 are playing an active role in caring for a relative with Alzheimer's Disease, according to the Alzheimer's Association.

When Sonja's mother's health rapidly declined, the family had to baby-proof the house, said Sonja of Somerset, NJ.

"My dad put extra locks on the doors. We put up baby fences to keep her from falling down stairs," she said.

Bernice Hegman died in 1996 at the age of 53.

"Alzheimer's disease is hell," Sonja said. "It's a slow hell for everyone, not just the patient. Even before she died, our family was falling apart. My mother was the glue not just in our immediate family, but also with our extended family."

Jo Maeder said her mother had one of the easier forms of Alzheimer's to deal with but she continually felt like she had to be "inside her body," because her mother couldn't.

"When did she eat last? Does she need to go to the bathroom? Is the movie she's watching over yet? Does she need a shower?" she said.

But, she added, because she was forgetful, her mother, Jo Cole, was easier to entertain in some ways.

"One positive was that she didn't remember seeing the same movie 20 times. 'Animal Planet' was the equivalent of 'Barney' to a 3 year old. She could watch it all day - though at night many of the shows had a menacing edge she didn't like. She was able to go out and do things with me. We became boon companions, exploring our new state from its wineries to hot springs to even drag queen bingo," said Maeder, who wrote a book about her experiences as a caregiver called "When I Married My Mother."

Maeder said people who think about taking care of a loved one with Alzheimer's should remember to watch their words and tone.

"The way you speak speaks volumes," she said. "Avoid talking about an elderly person in the third person in front of them as if they weren't there. Don't yell if they're not deaf, or speak to them like they're 5 years old."

PROFESSIONAL CARE

For families who decide to seek help caring for their loved one with Alzheimer's or another form of dementia, there is help.

Home Helpers is a senior-care facility specializing in nonmedical and personal care. President Emma Dickison said Home Helpers deals with many families struggling with Alzheimer's.

"Some of the biggest challenges that family caregivers face is the struggle of everyday activities for Alzheimer's patients," she said. "Tasks such as bathing, dressing and eating become overwhelming for both the aging loved one and frustrating for the caregiver who is attempting to provide consistent care."

Dickison recommends family members join a support group and make sure all legal and financial documents are in order.

Sometimes, caregivers just need a little temporary relief from offering 24/7 support to their loved one.

At Silverado Senior Living in Scottsdale, Ariz., a flex program allows people caring for a memory-impaired person at home to bring their loved one to a Silverado community during times that they cannot be at home with them, said Shannon Ingram, marketing director for Silverado.

"Silverado will provide care and enriching activities for as many hours as is needed on a very flexible basis. This is a great option for family caregivers who work, because it allows them to remain in the workforce. It also enables family caregivers to have personal time to themselves on a regular basis, which is something we strongly recommend to prevent caregiver burnout," said Ingram, who herself had a loved one with dementia. Her mother, Marianne Garner, was diagnosed in 2002 with vascular dementia -- one of the most common forms of dementia behind Alzheimer's -- at the age of 79.

At one point, Ingram quit her job to take care of her parents, but when caring for her mother became too much for her and her husband, they moved them to an assisted living community.

"In my experience, caregiving for a loved one with dementia is a double-edged sword. For me, it was both gut wrenching and heart-warming, a hellacious burden and a beautiful gift," she said -- there were the messes to clean up, the trips to the emergency room and the angry public outbursts.

Yet somehow, she said, her time as a caregiver taught her to pause.

"I was always so busy pursuing all of the important and urgent activities that come with climbing the corporate ladder, " she said. "I had become unaware of all those little things that make life splendid, from holding a baby's soft hand to brushing my mother's hair, from standing still with Mom to smell the sterling roses on her patio, to strolling by the ocean and listening to the sound of the waves crashing on the shore."

 

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