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.

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 facing Alzheimer’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.

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.

Marcia Haynes, 83, of Port Huron was the caregiver for her husband Fred Haynes, 85, whom she married in 1957. Marcia took on the role of understanding the disease as a caregiver and spreading her knowledge to others facing it in their families. 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.

Contact Robin Erb: 313-222-2708 or [email protected]. Follow her on Twitter @Freephealth.