MaryAnne Sterling, EVP Caregiver Experience
I am frequently disappointed at the lack of knowledge about Alzheimer’s disease (and other forms of dementia) that seems to be pervasive in the US. Thirty years ago, this was understandable – but not in 2019, when it’s an epidemic. It is still the taboo subject that nobody wants to talk about. Get over it.
Last week, I was absorbed in a heart-breaking article about a Hollywood movie mogul who has Alzheimer’s disease and the epic battle that his family is going through as they publicly disagree about his care. Some of the accusations are stunning and misinformed. I felt the need to debunk a few myths.
If you have not been a family caregiver for someone with Alzheimer’s, you have no clue how this insidious disease impacts a caregiver. It drains the life out of you and decimates your finances, your career, your physical and emotional health, and eventually, your sanity.
There is currently no treatment and no cure for Alzheimer’s. There are several drugs on the market that are very confusing for families to understand and misleadingly advertised. These drugs can slow the progression of the disease in some people (not all) for a limited time. As the disease progresses, the drugs become useless and are eventually discontinued. Don’t be fooled by snake oil. There is nothing that can treat or reverse this disease.
Caring for a loved one with Alzheimer’s is extraordinarily expensive. There is a desperate lack of trained home healthcare workers available – no matter how much money you have to pay them. Many family caregivers must quit their jobs because of the duration and intensity of the caregiving. They go bankrupt or, at a minimum, put their financial future in extreme jeopardy paying for services that are not covered by insurance plans – including Medicare. Memory care facilities can run $10k+ per month.
The perception that someone with Alzheimer’s is just “forgetful” is comical. This is a neurodegenerative disease that has consequences far beyond lapse in memory. As the disease progresses and different parts of the brain are impacted, people with Alzheimer’s can become combative, incontinent, unable to perform simple tasks like eating and dressing themselves, wander away from home, and need 24-hr-a-day supervision to ensure they do not hurt themselves or others by leaving the stove on or the water running (just to name a few). Serious falls are commonplace. Hospital stays are a nightmare. The healthcare system has no idea how to deal with someone who has Alzheimer’s. Family caregivers have to continuously battle for decent medical care in a system that is often reluctant to engage with the caregiver.
To make matters worse, you lose the person with Alzheimer’s twice: first to the disease and then to death. As the disease progresses, you get little sleep and struggle to keep your job while your friends and family become invisible. Any semblance of normalcy disappears. Eventually, you realize that you can’t stay awake 24-hours a day to monitor the person with Alzheimer’s who no longer sleeps at night. You make the devastating decision to put the person you care for in a nursing home or memory care facility, knowing they will not receive the same compassionate care that you provided. If you don’t put them in a facility, you may not survive – physically or mentally – but inevitably, you have family members who won’t understand.
You are now armed with a dose of reality. The next time you hear about, read about, or encounter someone who is an Alzheimer’s (or other form of dementia) caregiver, perhaps you will see them through a different lens. Encourage them to:
- Connect with other caregivers in the same situation – via online or in-person support groups
- NOT try to do everything on their own – solicit help from family, friends, and the community
- Be open with family and friends – don’t keep the disease a secret from others
- Pro-actively take care of themselves