This commentary is by Tracy Farnsworth of Georgia, Vt. In addition to being a family caregiver to a parent with Alzheimer’s, she is a self-employed content writer for several marketing firms.
One of nine U.S. adults aged 65 or older (6.2 million people) has Alzheimer’s disease. There are 14,000 adults with Alzheimer’s in Vermont alone.
When care services are needed, families discover waitlists that span years. With 25,000 unpaid family caregivers in this state, I know all about it, as I am one of them. I’ve helped my mom and dad for more than a decade.
My mom was inspiring. You may even have met her at some point. She and several other moms planned and pulled off several successful Underhill ID funfairs. She was one of the faces you’d see at Ames Essex, TD Bank, and Williston’s Natural Provisions.
All of that changed when she started forgetting things that had long been her routine.
I’ve had many people in my life tell me that Alzheimer’s isn’t that bad. “Sure, your loved one forgets who you are …” Forgetfulness is just a scratch on the surface. That person you love retreats and wants nothing to do with others.
She looks you in the eyes, tells you how much she hates you, and wishes you’d go away and never return. She pushes you into a wall with clenched fists while telling you she’s leaving and you can’t stop her. She grabs at the steering wheel while you’re driving down the road because she sees a tiny man sitting there, and she demands you make him go away.
When my dad passed away unexpectedly, we had no idea what he was going through. Even with our weekly visits, it didn’t paint the complete picture. I quit my job and went back to working from home, writing web content for my former clients. I began diving into what care she needed, catching her up on medical appointments, and learning all I could. It wasn’t long before we realized that she needed someone around 24/7.
Her house of almost 50 years was no longer recognizable to her. She was convinced a neighbor had threatened to kill her. We spent hundreds buying her clothes, only to have them thrown in the trash because she didn’t recognize anything. Stores triggered panic attacks and her desperate need to flee. She’d leave her patio door wide open all night.
I’d try to work from her house, but she was always jumping up to go outside. She’d put dirty cat litter in her laundry detergent, her wallet in the freezer, and clothing in the access panel to her bathtub. She was sleeping only two or three hours per day.
The decision to move her into assisted living wasn’t easy, but it was safest. We faced long waitlists. Alzheimer’s care is often well over $7,000 a month no matter where you look. Money runs out fast. Experts told us it was best to move to a Medicaid-approved facility and private-pay for a year.
She didn’t even last a month in the level III Medicaid-approved community that was supposedly well-versed in late-stage Alzheimer’s. They told us they could not handle aggression and rage, both very common in the later stages. After a month’s hospital stay, she was out of money and had to go onto Medicaid sooner than planned. Her care worker found her a bed in New York. I’ve heard that several Vermonters are there because of a lack of level III facilities in this state.
Vermont’s Home and Community Based Long-Term Care system is in poor shape. Thirteen level III facilities have shut down. Some level III are ill-equipped to manage aggression in dementia. Adult day centers, at least three at this point, have closed. Facilities that are still open and accept Alzheimer’s patients with severe aggression have waiting lists extending into years rather than months. Many tell you that if your parent isn’t a private pay resident for a year or longer, they will not accept them. Where does this leave families?
So many other family caregivers in Vermont could tell you very similar stories. Like me, they can end up feeling hopeless, alienated, depressed, and so many other things. Verbal and physical abuse can be daily occurrences with Alzheimer’s. Countless hours are spent making calls, writing emails, and trying to figure out who to turn to for help. Sometimes, that call for help just isn’t answered.
How can you support your friends, family and neighbors who are in this situation?
Every Vermonter could help families like mine and many others by getting Sen. Leahy, Sen. Sanders, and Congressman Welch to support the Comprehensive Care for Alzheimer’s Act (S.1125/H.R.2517). I’m reaching out to Vermont’s delegation to stop and look at this issue that thousands of us face.
Consider an act of kindness in November and help people in your community, or even those you know. Reach out to your elected officials and talk to them about the importance of funding Alzheimer’s and dementia programs and services.
