Hidden heroes: when family members serve as caregivers - Salish Current
October 23, 2023
Hidden heroes: when family members serve as caregivers
Aria Nguyen

Crafts created by Patti, who attends a Dementia Support Northwest group, send messages of encouragement. Patti makes and sells cards and other items thing to raise money for the organization. (Courtesy image)

October 23, 2023
Hidden heroes: when family members serve as caregivers
Aria Nguyen

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(Ed.: Content warning: discussion of death.) 

Garvin Eddy and his wife Julie sit in front of a canvas, each taking a turn adding strokes and designs to the image forming before them. 

What may seem like a regular activity to some poses deeper meaning for Garvin — this is how he began to communicate with his wife after she lost her ability to speak due to frontal temporal dementia.

“I’ve always kind of treasured it because … she would paint for a while and then I would paint for a while,” Garvin said. “So, art was one of the ways that we were able to still communicate.”

Garvin — like the other 850,000 family members in Washington state — served as a long-term caregiver, according to the Washington State Department of Social and Health Services — all the labor going unpaid.

Most of these family members —children, spouses, even grandchildren — care for those living with cognitive diseases that impair memory, such as Alzheimer’s or dementia. In total, their efforts would equate to about $10.6 billion each year in paid care. 

With Alzheimer’s the fifth-leading cause of death in Washington state and the third-leading cause of death in Whatcom County in 2021, family caregivers very often are those who care for the ones they love until the very end.

Garvin’s and Julie’s story

Garvin was a production designer for 45 years in Hollywood before moving to Vancouver, British Columbia, in 2012 to teach at the University of British Columbia.

In 2013, Julie started to show signs of memory issues. Garvin took her to a neurologist in Bellingham and she was diagnosed with dementia. At the time Julie was assessed as “cognizant,” but over the next two years, her health rapidly declined. 

“I realized at the time that I didn’t know how much longer I was going to be able to work,” Garvin said. “As her condition declined, I was able to do less and less, and finally I ended up having to retire because she required more and more attention.”

About 39% of caregivers nationally leave their jobs to have more time to care for a loved one. Around 17% of caregivers of people diagnosed with dementia quit their jobs either before or after taking on the responsibility of caring for their loved one. 

Despite making these life changes, Garvin refused to put Julie into a care facility; he said he believed he could give her the best and most comfortable care she deserved. 

“Fortunately, I had reached retirement age by that time. I was able to get my Social Security and my pension and so I didn’t have to keep working [and I] was able to make enough money to continue to be as supportive and also be a caregiver,” Garvin said. “That isn’t always the case.”

The cost

Caring for a loved one can be expensive: about eight out of 10 caregivers stated having to pay out-of-pocket for expenses related to caregiving, which often accounts for 26% of their annual income. 

Most people turn to at-home caregiving due to the price of long-term memory care, which is about $8,000 to $10,000 a month according to  Kelsey Lovik, a Northwest Regional Council dementia program specialist.  When it comes to long-term care, she said, it is “absolutely not” accessible.

“There’s not enough of it to go around. It’s not affordable to most people,” Lovik said.

There are many hurdles and bureaucratic processes involved when trying to care for a loved one with a disease like Alzheimer’s or dementia. 

The most trouble often stems from wanting to use state-funded care, she said. People who cannot pay for care out-of-pocket may turn to Medicaid — which is a strenuous and complex process.

“For an individual and unmarried person to be considered eligible for Medicaid, they need to have less than $2,000 in resources,” Lovik said. “And that $2,000 — less than $2,000 — is really scary for a lot of people. I don’t think people recognize that really, Medicaid is a last resort.”

She explained Medicaid is designed to ensure people are using all other assets before turning to the state or federal government for long-term care expenses. 

“I’ve sometimes saved people some trouble when they call and say ‘you can get what you can pay for,’” Kate Massey, another Northwest Regional Council dementia program specialist said. “If you have a lot of money there are some choices, and you can probably find somebody to help you navigate them.”

Massey said there is currently a shortage of caregivers both working in facilities and at home. This “gaping hole” in the system has resulted in more people continuing to do the care work themselves. 

The average age of family caregivers is about 49 years old.

Care for the caregiver

Findings show that family and at-home caregivers lack time, or refuse, to care for themselves. This can lead to a variety of issues such as anxiety, depression, lack of sleep and more.

Without any kind of break or support the caregiver is as sick as or sicker than the person they’re caring for, Massey said. 

The Centers for Disease Control and Prevention states caregivers are at risk of having multiple chronic diseases due to the neglect of their own health while tending to the health of others. About 40.7% of caregivers reported having two or more chronic diseases, the organization reported.  

“Dementia is an extraordinarily cruel disease not only for the person with it but also for the family,” Garvin said. “It affects the entire family. The entire family.”

Finding support 

Family caregivers also do not receive the training they need to appropriately and safely tend to their loved one, Gavin said.

A home care aide or advanced home care aide specialist is required to have about 70–75 hours of training, something Garvin said he would have liked to go through to better care for Julie while she was sick.

“I didn’t have any training on anything. I had not a clue how to do any of that,” he said. “I didn’t really know anything about bathing, I didn’t know anything about, you know, all kinds of hygienic things. I was pretty much on my own.”

Garvin did attend online support group meetings provided through Dementia Support Northwest — a nonprofit organization supporting caregivers throughout their journey. Meetings are offered both in person and on Zoom.

“You really suffer two deaths when you have somebody with dementia, because first the person that you knew dies, and then their body dies,” he said. “You watch the person who you knew die over a very long period of time in small little pieces … you don’t really realize it when you’re caregiving you’re subjected to trauma.”

Garvin attended online support groups, listened to his peers and met with others who understood the process of caregiving, although most of the time choosing not to speak.

Leslie Jackson helps run the support groups. Jackson was a nurse for 50 years working primarily in long-term care with gerontological nurses. Much of Jackson’s family lived with dementia or Alzheimer’s.

Moving up to the Pacific Northwest to be with her son who attended Western Washington University, Jackson got involved with Dementia Support Northwest and the Alzheimer Society of Washington.

Jackson started running groups for people living with dementia. These sessions consisted of discussions, exercises and validating each person. The three main components of the group were physical, social and cognition, she said. 

Jackson also got involved with support groups where people are brought together to address challenges or issues they are having from evidence-based perspectives, where nurses and previous social workers answer questions raised by groups members and give advice to avoid individuals gathering misinformation about cognitive diseases.  

One of the best things people can do is access support, she emphasized.

“Many people that attend say it saved their life because they’re with other people that understand; they’re not isolated,” she said. “The worst thing that could happen for the caregiver and the person living with dementia is isolation because that increases the risk for depression and it’s under-recognized and undertreated in the geriatric population.”

Patti (who asked that only her first name be used) said the best support she has ever received came from Dementia Support Northwest.

Patti took care of her husband after he broke his back in an accident. After going in for multiple surgeries and being put under anesthesia, he started to develop cognitive issues such as being unable to remember his birthday, pump gas or use a screwdriver, issues out of the ordinary for someone whom Patti described as “handy.” 

This year Patti decided to admit her husband into an assisted-living home.

“I was just getting tired and worn down,” she said. “And then the doctor said you need to find a support group.”

No matter how similar or different the experience an individual may share during a group session, Patti said everyone is understanding. 

“There’s no competition,” Patti said. “The person that you love and married, they’re gone, and you need that reminder that you’re doing good. You’re doing wonderful, and you know you are in your heart but sometimes you’ll have to be validated.”

Lovik said a great first step is to call the Aging and Disability Resource Center to find the programs one might be eligible for in long-term care, income, and other resources now or in the future. 

What happens next

People living with Alzheimer’s or dementia often do not plan or do not know what goes into planning when it comes to their health conditions.

Massey said it is important for the individual to have legal and financial plans and to have lots of conversations with family members about what is important to them.

Lovik said something the Northwest Regional Council offers is a program called SHARE Dementia, specifically for people who are newly diagnosed or at an early stage.

This program allows these individuals to share what kind of care they would like and who they would like to give that care. 

“At the end of the sessions, they have a care plan in place and they can go back and revise it, but it’s theirs,” she said. “And to give people some autonomy in that decision-making process is great. It’s also a huge relief for the families to know, ‘I’m honoring this person’s wishes and I’m not just trying to guess and make it up along the way.’”

In terms of more solutions, Lovik said there needs to be investments in home and community-based services that support caregivers.

“Investing in our workforce, investing in caregivers, getting more people interested in that field, and also compensating them,” she said. “If we’re going to make it more lucrative to people, we’re going to naturally have more people interested in that kind of work.”

Garvin said there is a lot to the subject of Alzheimer’s and caregiving, but through sharing these stories he hopes the needle will change slightly and that more awareness will be brought to the situation. 

“There is there is help,” Garvin said. “You are not alone.”

Resources:

— Reported by Aria Nguyen

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