When Peggy Galle first met her husband Pete more than 20 years ago, he was always trying to help other people and make them laugh. Many things are different now that he’s in the later stages of Alzheimer’s disease, but some things have stayed the same.
“He still tries to be the speaker,” Galle said. “And it gets garbled. And sometimes, you just don’t have a clue what he’s saying.”
Galle still cares for her husband in their Anchorage home. He goes to adult day services during the week and in-home care workers help every morning. Pete, who is 74, started developing symptoms 13 years ago. When they wed, Galle said they felt like they had so much time ahead of them and exciting plans for travel. Then everything startinging changing, and she said it’s hard to watch him slip away.
“My husband dies every day,” she said. “Every day, I see less and less of the man I married.”
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The Alzheimer’s Association estimates that Galle is one of about 12,000 Alaskans caring for elders with memory loss in the state. According to the Alaska Commission on Aging, the number of people with Alzheimer’s or dementia in Alaska is set to almost double by 2030 to 23,900 older adults.
Galle, who is 69 and still working full-time, is exhausted. She said she knows the situation needs to change for everyone’s safety. He has fallen in the shower and out of bed, and she has trouble lifting him because he’s a large man.
She said she’s still considering what their next steps should be, but it’s a hard decision to make. Each facility offers different types of care, and just because something is marketed as a memory care facility, that doesn’t mean they provide special facilities or care. “Memory care” isn’t a licensed designation in Alaska, so it’s not regulated by licensing authorities at the state Department of Health and Social Services.
Elizabeth Smith, a care coordinator with Alzheimer’s Resource Alaska, helps people like Galle navigate the maze of services and options available to people with memory loss.
“So there really isn’t any specific criteria” for memory care services, Smith said, “other than you understand the individuals that you are helping have significant cognitive impairments. So you take more precautions. There’s usually more staffing ratio to resident ratio. Not all the time. I do want to make that clear.”
Smith said memory care facilities also take measures to ensure that residents can’t wander outside by themselves by putting keycodes on doors or disguising them as bookcases or windows.
“It’s creative approaches so people don’t feel captive and they feel like they still have freedom to roam around, which is what we want,” Smith said. “We don’t want them to feel enclosed and like they don’t have options. Even someone with significant cognitive impairment still needs room to breathe.”
Choosing an assisted living home for your loved one is a personal decision that requires touring the many small and large facilities around the area and asking a lot of questions, Smith said.
“I encourage them to ask, ‘What is their staffing? What is their staffing turnover?’ That’s a big one: continuity,” she said. “I have found in my years as a care coordinator that long-term staff usually provide happier, better care for individuals.”
Smith said people also just have to trust their gut instincts about what they see when they tour a facility.
“You’re seeing their care and actions,” she said. “So talk to residents, talk to staff, get a picture, get a feel for it. If something feels off, you’re not going to feel comfortable with your loved one being there.”
And then comes the question of payment. Costs can range from $7,000 to $14,000 per month. If people can’t pay for assisted living out of pocket or don’t have long-term care insurance, then families may be able to sell off assets to qualify for Medicaid, Smith said.
Smith said the system is very complicated and care coordinators can’t help everyone because of different program eligibility requirements and high caseloads.
There are some small grant programs to support caregivers and keep people in their homes, but they are limited. The grants can cover things like adult day services to provide respite or assistive technology, like lifting recliners to help people get up and down. Alzheimer’s Resource of Alaska also provides free education resources and support groups for caregivers and for people with dementia. All of those programs help, but Smith said they aren’t enough.
“It’s a far from perfect system,” she said. “It does not meet the needs of everyone by a long shot. There are nonprofits, including our own, that really try and provide supports where we can, but there’s also a significant lack of funding to meet everybody’s needs.”
For Peggy Galle and her husband Pete, some moments together are still sweet.
“He just wants me to sit with him,” she said. “Just sit next to him, hold his hand… He doesn’t want to lose that closeness. I think he’s afraid. Things are slipping away. Somehow, maybe there’s some knowledge of that. And he’s still trying to grab hold of it.”
Galle is still searching for a place where her husband will be comfortable and where she will be okay with the care he’s receiving. She’s grappling with the idea that for the first time in her life, she will be living alone. It’s physically and emotionally hard, but she doesn’t have many options.
“I need to keep going,” she said. “Because I need to take care of him.”
With the support of friends, people Pete helped in the past, and others who are helping her navigate their options, Galle said she’ll continue to look for a solution.
This story is part of an ongoing solutions journalism project at Alaska Public Media about destigmatizing mental health. The project is funded by a grant from the Alaska Mental Health Trust, but is editorially independent.