Worn down by Alzheimer's, some work to close "care gap" by Robin Erb, @freep

This is great story by the Detroit Free Press reporter, Robin Erb on the realities of Alzheimer's disease. Please read and share this story.

See the video here too: Worn down by Alzheimer's, some work to close "care gap"



Fred Haynes has once again wandered into the empty spaces of Alzheimer's.



On this wintry morning, the retired Realtor is laughing at something only
he can see outside the living-room window of his Port Huron home, his
lips moving nearly imperceptibly. His gaze moves toward his visitors,
then to his wife, seeking reaction.


 

Marcia  Haynes, 83, of Port Huron, is the caregiver for her husband Fred
Haynes, 85, whom she married in 1957. He now has Alzheimer's and she has
taken on the role of understanding the disease as a caregiver and
spreading her knowledge to others facing it in their families. He pets
their cat Ophie in their home in Port Huron Monday, Nov. 24, 2014. (Photo: Regina H. Boone/Detroit Free Press)



Something about a cat, perhaps? Or children?


Outside, though, there is only Lake Huron, meeting the ash-gray sky on an indistinguishable horizon.

"It's like being left behind again," wife Marcia Haynes said.



As it becomes increasingly clear how many Americans will be facingAlzheimer's in the coming years — an estimated 190,000 in Michigan by 2025, according to the Alzheimer's Association — advocates are building programs to help families work through moments like this.


She's lucky, Haynes said. She has faced Alzheimer's and has help from health aides and family and friends.


Others are isolated in a "care gap" — the time between hearing the diagnosis at a doctor's office to the moment, sometimes years later, when they're so overwhelmed and isolated by emotion and the physical toll of having to help with intimate personal care that they feel they can no longer go it alone.


"What happens is that you come in and get this diagnosis, and you just don't want to deal with it. You go on with life and you pretend it's not there and nobody wants to talk about it," Haynes said. "The patient is in denial and the caregiver, trying to be supportive, goes right along with it."

Marcia Haynes, 83, of Port Huron, is the caregiver for her husband Fred
Haynes, 85, whom she married in 1957. He now has Alzheimer’s and she has
taken on the role of understanding the disease as a caregiver and
spreading her knowledge to others facing it in their families. (Photo: Regina H. Boone/Detroit Free Press)

So frustrated caregivers feel the only option is a nursing home, said Barbara Betts Swartz, programs director at the Michigan Great Lakes chapter of the Alzheimer's Association.


"There is often a long period of time between the diagnosis and where the rubber hits the road if you will," she said. Alzheimer's is "very unannounced, unwelcome and unanticipated. Nobody is immediately prepared for all the implications."


Newer efforts, she and others say, focus on reaching out to those who are newly diagnosed — inviting them to programming so caregivers and their loved ones can walk together in the journey.


In fact, staffers at the Alzheimer's Association have been connecting with doctor's offices, encouraging doctors to have newly diagnosed patients or caregivers sign a release so that the doctor can send their contact information to the association. That allows specially trained staff members to contact the family before the caregiver is too overwhelmed.

The message must come early and be clear, Swartz said: You're not alone. Do something about this now. Don't wait.

Among new offerings by the two Michigan chapters of the Alzheimer's Association:

■ A $150,000 state grant pays for social workers and trained counselors to
visit caregivers in their homes. The staff can connect families to
organizations that can support them, help them set up care plans, and
even be a listening ear to frustrated family members. For now, the
program is limited to Macomb, Monroe and St. Joseph counties.

■ Also this month, organizers have expanded the Minds on Art program, in which
those with dementia and their care partners tour the Detroit Institute
of Arts, tapping into opportunities to socialize and stimulate creative
thinking. With the new programming, DIA experts visit the
Southfield-based Alzheimer's Association of Greater Michigan to lead art
discussions.

■ The Early Stage Social Club is designed for people in the early stages of
memory loss, and provides physical and cognitive stimulation,
socialization opportunities and stress relief through yoga and a coffee
hour. Programs have begun in Clinton, Eaton, Ingham and Washtenaw
counties and are expanding to other areas in the state.

■ Alz Connected is the first dedicated online social networking community for
anyone impacted by Alzheimer's. It provides a safe place for people to
connect with others in similar situations 24 hours a day, 365 days a
year, at no charge. Go to www.alzconnected.org.

■ Alzheimer's Navigator is an online tool designed for individuals with Alzheimer's,
their families and caregivers, to create customized and comprehensive
action plans, based on answers provided through short online surveys at www.alzheimersnavigator.org.

■ A three-part series, "Living with Alzheimer's," is a training tool kit,
available in person or online. There are actually two programs — one for
those living with the disease and the other, designed for caregivers.
Go to http://training.alz.org/.


And last year, more than a half-dozen Michiganders contributed to the book"Chicken Soup for the Soul: Living with Alzheimer's & Other Dementias." The collection of short stories from 101 caregivers and people with dementia underscores this point: Don't pretend Alzheimer's isn't part of your life now. Adapt. Journey together.



For her part, Haynes has been working with health care providers in St. Clair County to make sure every hospital, every clinic and every doctor's office has brochures to explain dementia and Alzheimer's disease to patients and loved ones.


"No one should hear, 'You have Alzheimer's' and then nothing else but 'Good-bye,' " she said.

Kim Simecek remembers that feeling of hopelessness well.


"My mom was in denial. She didn't want to tell us — her kids," said Simecek of Brighton, whose mother, Sharon, was diagnosed at 62.


Simecek said part of the problem may be that the newly diagnosed may take their cues from health providers who may not know what to say. The sixth-leading cause of death in the U.S., Alzheimer's has no cure and no good treatment.


"There's this feeling: 'OK, now what do we do?' There is no hope. It's a waiting game," Simecek said.

But that nonnegotiable end is precisely why it's critical to face reality as quickly as possible, Simecek said: "You have to get a jump-start on this. You need to know how to plan."


In Port Huron, Haynes likens the disease to a train.


It starts out slow and there are more good days than bad. But over time,especially as the two of them tried to ignore it, Haynes realized she was being crushed by the feeling of being alone.

"We've been married 57 years, and it took me awhile to understand that he has no memory of those 57 years. All our travels, our children and our grandchildren (are) completely wiped out," Haynes said.



Alzheimer's affects U.S. women more

Women in the U.S. carry a disproportionate burden — both as caregivers and patients — of Alzheimer's, the sixth-leading cause of death of Americans. Consider:

■ Women in their 60s are about twice as likely to develop Alzheimer's sometime in the rest of their lives than breast cancer.

■ At 65, women have a 1 in 6 chance of developing Alzheimer's, compared to 1 in 11 for men.

■ About 3.2 million women 65 and older already are living with Alzheimer's.

■ About 60% to 70% of caregivers for those with Alzheimer's are women. That's
about 2.5 times more women than men who provide round-the-clock care for
someone with Alzheimer's. Moreover, they're more likely than male
caregivers to offer the more intensive, intimate aspects of caregiving,
such as bathing, toileting and managing incontinence.

For more information about Alzheimer's and dementia or to find out more about programming in your area, visit www.alz.org or call its 24-hour hotline at 800-272-3900.



For facts on Alzheimer's, visit
www.alz.org/documents_custom/2014_facts_figures_fact_sheet_women.pdf

 [For additional resources see www.daaa1a.org]

Two movies raise awareness of disease

Two movies are raising awareness for Alzheimer's. One is the focus of a free screening next month:

■ In "Still Alice,"  actress Julianne Moore portrays a linguistics professor diagnosed with
early-onset Alzheimer's. Moore has been nominated for an Oscar for the film.

■ The movie "Glen Campbell ... I'll Be Me" documents the story of musician Glen Campbell, who set out on a tour in 2011, having been diagnosed with Alzheimer's.

A free screening of the Campbell film will be held at 7 p.m. Feb. 8, at the Michigan Theatre, Ann Arbor. It is being sponsored by Evangelical Homes of Michigan, Glacier Hills Senior Living, Presbyterian Villages of Michigan and United Methodist Retirement Communities.


Contact Robin Erb: 313-222-2708 or rerb@freepress.com. Follow her on Twitter @Freephealth.
Worn down by Alzheimer's, some work to close "care gap"