3 Links: Representation, the Time Tax and Support

PicnicHealth

Aug 09, 2021 • 2 min read

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Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023.

Hey, Check This Out! is a list of content curated with the rare disease community in mind. Have a link to share? We’d love to see it. Contact us on Twitter, Instagram or Facebook and let us know what you’re reading, listening to and watching.

Representation and Finding Dory

Back in 2017, writer Elizabeth Picciuto examined the depiction of cognitive and physical disabilities in the sequel to Finding Nemo. “ Finding Dory is hardly the worst portrayal of disability, even out in theaters right now,” she writes. “... But sadly, it may have been a significantly better representation of me—that is, a parent of a kid with disabilities — than of a character with disabilities.”

Paperwork, aggravation and mental effort

According to writer Annie Lowrey, the time tax in America is “a levy of paperwork, aggravation, and mental effort imposed on citizens in exchange for benefits that putatively exist to help them.” Lowrey continues: “The time tax is worse for individuals who are struggling than for the rich; larger for Black families than for white families; harder on the sick than on the healthy.” Anyone who’s struggled to secure a 504 or IEP or made repeated calls to a health-care provider’s billing department — and had to explain a rare condition — will experience repeated flashes of white-hot recognition.

Support: ‘There’s no right or wrong way to go about it’

Sarita Edwards, founder and CEO of Everyone Is We, is also the host of “Being Rare,” a “community conversations platform bringing awareness and exposure to several different topics,” including rare disease. Edwards alternates between bite-size and full-length episodes on topics like balance, shifting resentment into gratitude and expectations from health-care professionals. A July 12 episode is called “One Minute Monday - Support” and manages to include several profound, actionable pieces of advice in just 60 seconds.

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Create a List

List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.
Ensure You Have the Appropriate Legal Status: It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.
Gather and Organize the Medical Records in One Place: It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.
Review the Medical Records to be an Informed Advocate: The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.

1. Build a support network.

When you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.

There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.

2. Stay organized.

The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.

3. Explore treatments and clinical trials.

We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.

4. Make time for self-care.

It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.