Everyone seems to know someone who knows someone with an Alzheimer’s diagnosis. The diagnosis is one of the many diseases swirling around the sphere of our awareness. Like cancer, or diabetes, or even COVID-19, what we know scientifically is not always clear or comforting. Fortunately for the person with the diagnosis, part of the protection as the brain loses its “oomph” (scientific term) is that the diagnosed person isn’t acutely aware of their shortcomings or losses. Certainly not as much as the people around them.
I became a caregiver for the father of my children when he was diagnosed in January of 2021. It’s not like we hadn’t suspected for a few years, but attributed the occasional lapses to “getting older.” When officially diagnosed, the kids, now capable young adults in their thirties, came “unglued” (another technical term for the world falling out from under them). Although we have been divorced more than a dozen years, I volunteered to pick up the health care aspects of the diagnosis so that the kids could cherish and enjoy their relationship with their dad. “You have to love your children more than you dislike your former spouse.” Besides, I work in health care, therefore I should know something, right? Wrong!
In 2020, 26% of caregivers in the US were tending to someone with dementia or Alzheimer’s, up from 22% in 2015. More than one quarter of American family caregivers said they had difficulty coordinating care. Forty-five percent of caregivers today say they have suffered at least one (negative) financial impact. In 2020, 23% of American caregivers said caregiving had made their own health worse. Sixty-one percent of today’s family caregivers work other jobs. (All data from aarp.org/caregivers). I have learned that the Alzheimer’s Association and AARP are excellent resources, if you are knowledgeable enough to ask the right questions.
But, this isn’t about any of that! Clearly, caregiving is or should be its own health condition. The act of caregiving is as much a social determinant of health for the caregiver, and the care recipient, as any medication or physical intervention. The adaptations and accommodations needed to provide quality care are simply not available, nor funded, or even considered as part of the equation. And if not for family caretakers, what would happen?
And the biggest barrier builders are the medical providers and systems that are funded to supposedly help individuals live safely in an independent setting. Let me offer just two opportunities where change is needed.
First, a credible local organization is funded to provide care managers for adults of a certain age. Getting help requires an application that I had to complete because use of the computer is impossible for the kid’s dad. Because the “patient” didn’t complete the form himself, the agency required a personal interview. The referred party generally loses his phone, doesn’t turn it on, and only answers calls from known numbers. Even without Alzheimer’s, that’s his right, right? So, I set up a call at a predetermined time and day, half expecting the kids’ dad to forget it. Nothing happened. When I checked his phone history, there was no incoming call that time, or even that day, or actually ever from the number provided. I am back at square one, and our supposedly incapacitated family member thoughtfully remarked “why would I trust them now anymore anyway?” This is a not a helpful service!
Second, provider offices are unaware of the accomodations needed for success. In this care, his medical provider really appreciates that I get him to appointments, on time and on the right day, and coordinate all his care needs. If I didn’t, would they provide that service? No! But, they systematically boot me from access to his medical record. They say that, because of the diagnosis, he supposedly isn’t capable of designating a caregiver for more than one instance at a time. Hundreds of legal costs later, I updated the Durable Medical Power of Attorney (Hint: readers, get one for yourself and your family, you just never know!) and faxed it not once, not twice, but three times (at 55 cents a page at FedEx) to the provider who finally acknowledged that they received the one with the earliest date, indicating they had had it all along. Sigh, this is helping how?
I can add many chapters on dealing with the Veterans Affairs (VA), and transportation benefits, and online pharmacy benefits. And social workers with sugary sweet mawkish voices when talking to the person and then the instant ability to switch to forceful boundaries when saying “no.” And the prejudices of front desk and phone call takers talking about him rather than to him is so dehumanizing. It is a daily adventure that just has to be appreciated one day at a time.
So, my message to the folks working in the support system, medical or otherwise, is to pay attention to what you are saying and asking. Think about how your request sounds to someone who has limited capacity, or to a caregiver who has limited time. Not only “do no harm” but be useful and helpful. Say “yes” first and ask questions later. Treat others as you would want to be treated yourself, especially as you become a caregiver because statistically, that role is in your future whether you choose it or not.
And to our policy makers; let’s get on with it! Don’t keep hiring navigators to work in a broken system; fix the complex maze! Strengthen workplace support to expand the definition of FLMA to include whomever the caregiver designates. Expand financial supports for caregivers (AARP again, the average amount of annual out-of-pocket expenses for caregivers is $7,242). Get more well-trained caregivers on the job with better wages. Fix the transportation options and hint, a bus is not an option! Address the inequities that cause the disparities in the caregiving world. (All policy positions compliments of AARP).
Fortunately for our family, the kid’s dad is in good spirits and we can all find humor in the upsets and errors that abound. Without a sense of humor, caregiving is really hard, unrewarding, expensive and demanding. With a generous dose of humor, you can get through most everything.