Family caregiver works three jobs to pay for Mom’s dementia care
The day Skip Walker received a phone call from Adult Protective Services threatening to take custody of his mother, was the day he became a long-distance caregiver. Skip, who resides in the Bay Area, found ways to care for his mother whose home was in Arkansas, but it came with a cost. Like so many of the nearly 1.4 million caregivers in California, Skip found himself struggling to support two households for the seven years his mother lived with dementia.
One of nine kids
Mary was one of nine kids who grew up on a cotton farm in Arkansas. While in grade school, Mary’s father died. This meant she had to drop out of school to help support her family. During the 1950s she decided to move to the California Bay Area where she met her husband. Together, they had three children, two boys and a girl.
Throughout her children’s life, Mary was a bright spot of humor. She loved to dress up in costumes in order to get people to laugh. “She would sit in the front window in a chair, mechanically waving and nodding at people driving or walking by,” said Skip Walker, one of Mary’s sons. “People would stop or slow down because she looked so life-like. When they did, she’d stand up and wave at them. We had people so surprised they locked up their brakes.”
Mary was incredibly close with her daughter, Jean, and they considered themselves best friends. As Mary’s husband left the family in the 1980s, when it came time to retire, she and Jean moved back to Arkansas to be closer to Mary’s siblings.
Unfortunately, Mary’s daughter had a heart attack and passed at a young age, leaving Mom alone. “They were best buddies,” said Skip. “They’re buried next to each other.”
An unexpected call
Because Mary was living alone, Skip and his brother Rob were unaware that their mom was beginning to show the signs of cognitive decline. It wasn’t until they received a phone call from Adult Protective Services that they realized how bad things had gotten for their mom.
“She had fallen and was in a rehab facility,” said Skip. “They got her back to where she could walk and be stable. We got a call from Adult Protective Services. They said, ‘She’s not going home. Either you put her in a care facility, or the state is going to take custody of your mother and we’ll do it ourselves.’”
The rehab facility Mary was in was also a long-term care facility. Skip and Rob decided it was best if she stayed there. Skip said, “It was one of the nicest facilities and had the best reviews.”
In 2008, Mary was diagnosed with vascular dementia. This form of dementia is caused by conditions that block or reduce blood flow to various regions of the brain, depriving them of oxygen and nutrients.
After learning his mother had dementia, Skip turned to the internet for help. “I like to research and understand,” said Skip, “I ended up on the Alzheimer’s Association website [alz.org]. There was a section on symptoms, stages and behaviors. Some of this she was doing seven years ago and we didn’t connect the dots.
“It was interesting and frightening. We knew so much about what was going to happen but couldn’t do anything to alter the trajectory. I don’t know how I would have survived without the caregiver section [on the website]. It helped me hold it together.”
Over the next several years, Skip, who still lived in the Bay Area, became a long-distance caregiver. He flew out to visit his mom three or four times a year, making sure he always came out for her birthday. Skip would invite her whole family over to celebrate. When he wasn’t visiting, Skip called his mom at least once a day.
Despite all of that, there came a day when Mary didn’t know who Skip was. Skip shared, “The hardest day of my life was when she asked me to remind her who I was.”
Dealing with family
Unfortunately for Skip and Mary, Rob passed away suddenly, leaving Skip as the sole child to care for his mother. Skip debated if he should tell Mary about the death of her son. “I went to the caregiver site and debated if I should tell her my brother passed,” said Skip. “Everything I read and all the people I talked to said it was mixed. It was like rolling the dice. You could make it worse, so I decided not to tell her.”
However, Mary’s local family didn’t believe that Mary had dementia. They thought it was just a normal part of aging. In their mind, it was cruel to keep her son’s death a secret. It got to the point where the local family told Skip that if he didn’t tell Mary about her son, then they would.
Against Skip’s better judgement, he told his mom about his brother. “In retrospect, I didn’t have a choice,” said Skip. “If anyone was going to do it, it needed to be me. If I could do it again, I wouldn’t have. Every time she’d forget and remember, it was like the first time.”
Sadly, Mary’s local family would come to understand that Mary did in fact have dementia as both of her sisters would later be diagnosed with the disease.
According to the Alzheimer’s Association 2023 Alzheimer’s Disease Facts and Figures report, the total lifetime cost of care for someone with dementia in the United States is estimated at $392,874 in 2022 dollars. Seventy percent of the lifetime cost of care is borne by family caregivers in the forms of unpaid caregiving and out-of-pocket expenses for items ranging from medications to food for the person with dementia.
While Mary started off in basic assisted living, as her disease progressed, the cost of her care went up. By the end, Mary’s care was costing Skip and his wife, Machelle, nearly $6,000 a month. Despite renting out Mary’s Bay Area house and the money from her social security, Skip was barely able to cover half of Mary’s monthly costs.
Skip works as a home inspector but in order to make ends meet, he had to take on a second and third job driving for Uber and Lyft. He continued to work three jobs until his car insurance threatened to cancel his insurance. “We’re a one income family,” said Skip. “I don’t even know how we did it. Every time we turned around Mom’s assisted care facility got more expensive. I make okay money but not a half million extra a year.
“When my brother passed, he didn’t leave any money to help pay for Mom. It felt like I was treading water in the deep end holding rocks. It was so stressful I can’t even describe it. The financial impact on families isn’t even funny.”
In 2015, Mary suffered a massive stroke and died. “Mom has been gone [for more than seven years] and we’re just getting back to normal [financially]. We had to stop making retirement contributions because we couldn’t afford it. I’m currently 68 and we had to delay our retirement.”
The cost of care
Paying for care is a big concern as Alzheimer’s progresses. Putting financial plans in place as soon as the diagnosis has been made can help you secure your financial future.
According to Genworth. Cost of Care Survey: Median Cost Data Tables the median costs for long-term care services in 2022 are as follows:
- Home care: A paid non-medical home health aide is $28 per hour and $1,113 per week (assuming 40 hours of care per week).
- Adult day services: $80 per day.
- Assisted living facilities: $4,635 per month or $55,620 per year.
- Private room in a nursing home: $306 per day or $111,657 per year.
- Semi-private room in a nursing home: $268 per day or $97,747 per year.
Here are a few steps that caregivers can use to get started:
- Talk about finances and future care wishes soon after a diagnosis.
- Organize and review important documents.
- Get help from well-qualified financial and legal advisors.
- Estimate possible costs for the entire disease process.
- Look at all of your insurance options.
- Consider work-related salary/benefits and personal property as potential income.
- Find out for which government programs you are eligible.
- Learn about income tax breaks for which you may qualify.
- Explore financial assistance you can personally provide.
- Take advantage of low-cost and free community services.
Helping other families
While Skip was researching his mother’s dementia diagnosis, he learned about Walk to End Alzheimer’s. He and his wife began participating at first in San Francisco and later in Silicon Valley. Skip asked a few of his coworkers to join him and they started a team. In 2017, Skip and his team raised enough funds to become one of the top 20 teams in Silicon Valley.
In 2020 Skip realized he wanted to do more, specifically a century bike ride. When Skip learned about the Alzheimer’s Association Ride to End ALZ®, he knew he had to sign up. Currently, there isn’t a Ride to End ALZ event in California, so Skip decided to participate in Colorado. When the ride became a virtual event due to the pandemic, Skip found himself hitting the Colorado peaks from his home.
“One of the reasons I ride and walk is for the family members and the caregivers providing financial support that are being pulled down to support their loved ones. It’s heartbreaking because everyone walking or riding has a sad story about a family member or friend or mom. For those people, it’s too late for them or will be too late to find a cure. And yet they are out there raising money so someone else’s [family] doesn’t have [to go through] that. That’s pretty powerful.”
Skip continues to raise funds for both Walk and Ride. He has more Walk shirts than he can wear and, since 2020, has participated in the in-person rides in Texas and plans to participate in the 2023 Ride as well.
Make Use of the Alzheimer’s Association website
Skip’s biggest piece of advice for other caregivers is to use the resources that are already available on the website. “I tell [people] to go to the Alzheimer’s website. Go to the caregiver section, look at disease progression, behaviors, ways to deal with behaviors and support systems for behaviors. Someone has already figured this stuff out and there is no reason you have to do this alone.”
Caring for a person with Alzheimer’s or dementia often involves a team of people. Whether you provide daily caregiving, participate in decision making, or simply care about a person with the disease — we have resources to help.
Paying for care is a big concern as Alzheimer’s progresses. Putting financial plans in place as soon as the diagnosis has been made can help you secure your financial future. Learn how you can put your financial and legal plans in place.