This review was written by Tracy Farnsworth of Georgia, Virginia. In addition to being a family caregiver for parents with Alzheimer's disease, she is also a self-employed content writer for several marketing companies.
One out of nine American adults (6.2 million people) 65 years of age or older has Alzheimer's disease. In Vermont alone, there are 14,000 adults with Alzheimer's disease.
When nursing services are needed, families will find waiting lists spanning several years. There are 25,000 unpaid family caregivers in this state. I don't know anything about it because I am one of them. For more than ten years, I have been helping my mom and dad.
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My mother is very inspirational. You might even see her at some point. She and several other mothers planned and successfully hosted the Underhill ID playground several times. She is one of the faces you see at Ames Essex, TD Bank and Williston's Natural Provisions.
All of this changed when she began to forget what had been in her daily life for a long time.
In my life, many people have told me that Alzheimer's disease is not that serious. "Of course, the one you love will forget who you are..." The forgetfulness is just a scratch on the surface. The person you love has flinched and doesn't want to have anything to do with others.
She looks into your eyes, tells you how much she hates you, and hopes you go away and never come back. She clenched her fist and pushed you down against the wall, and at the same time told you she was leaving, you couldn't stop her. When you were driving on the road, she grabbed the steering wheel because she saw a little man sitting there and she asked you to let him go away.
When my father died unexpectedly, we didn't know what he was going through. Even if we visit once a week, it does not paint a complete picture. I quit my job and went back to work at home to write web content for my former clients. I started to learn more about what kind of care she needed, caught up with her medical appointment, and did my best to learn. Soon after, we realized that she needed someone around 24/7.
She can't recognize her house for almost 50 years. She was convinced that the neighbors threatened to kill her. We spent hundreds of dollars on her clothes, only to be thrown into the trash can because she didn't know anything. The store triggered a panic attack, and she desperately needed to escape. She would leave her patio door open all night.
I tried to work at her house, but she always jumped out. She put the dirty cat litter in the washing powder, put the purse in the refrigerator, and put the clothes on the inspection board of the bathtub. She only sleeps for two to three hours a day.
Deciding to let her enter assisted life is not easy, but it is the safest. We are faced with a long waiting list. No matter where you look, the cost of Alzheimer's care usually exceeds $7,000 per month. Money is spent very quickly. Experts tell us that it is best to move to a Medicaid approved facility and pay privately for one year.
She didn't even spend a month in a level III Medicaid approved community, which is said to be proficient in advanced Alzheimer's disease. They told us that they were unable to deal with aggression and anger, both of which are common in the later stages. After a month in the hospital, she ran out of money and had to join the Medicaid plan earlier than planned. Her paramedic found a bed for her in New York. I heard that there are several Vermont states there because this state lacks Class III facilities.
Vermont's family- and community-based long-term care system is in poor condition. Thirteen tertiary facilities have been closed. Some level III patients cannot cope with the aggressive behavior of dementia. At least three adult day centers have been closed. The waiting list for facilities that are still open and accept severely aggressive Alzheimer's patients will be extended to years instead of months. Many people tell you that if your parents are not private paying residents for a year or more, they will not accept them. Where does this leave the family?
Many other home caregivers in Vermont can tell you very similar stories. Like me, they will eventually feel hopeless, alienated, depressed, etc. People with Alzheimer's disease experience verbal and physical abuse every day. Countless hours are spent making calls, writing emails, and trying to figure out who to ask for help. Sometimes, this kind of help call is unanswered.
How do you support friends, family and neighbors in this situation?
Every State of Vermont can help families like me and many others by getting Senator Leahy, Senator Sanders, and Congressman Welch to support the Alzheimer's Comprehensive Care Act (S.1125/HR2517). I’m contacting the Vermont delegation and let’s stop and look at this problem faced by thousands of us.
Consider the November kindness to help people in the community, even people you know. Reach out to your elected officials and talk to them about the importance of funding Alzheimer's and dementia programs and services.
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