Caring for someone living with a chronic condition can be overwhelming. There’s a lot to think about, from medical care to emotional support, from daily logistics to planning for the future. Staying organized with paperwork may seem minor, but for caregivers, it can make everything you’re dealing with a lot more manageable.
It’s never too early to gather important papers for the caregiving journey. Start with the following four documents, tuck them in a folder or clear sleeve, and keep them in a safe yet easy-to-access place. While planning for the future can bring up difficult emotions, don’t shy away from having these important discussions with your loved one. You’ll be glad you did.
Medical Power of Attorney
A medical power of attorney (POA) names someone who will serve as a proxy to make medical decisions on behalf of a patient. For people who may not be able to communicate or make decisions on their own, it’s key to make sure that the POA is durable—meaning it will stay in effect after the person becomes incapacitated. The POA may also be springing. This means it won’t spring into effect until the person becomes incapacitated.
Ideally, a POA will be created early, while the person is still able to comprehend and sign the document with informed consent. If your loved one is unable to understand the document and process, you can appeal to a judge at your local court to review the case and grant POA to you or another appropriate person.
In either case, it’s a good idea to work with an attorney to draft a POA. You can find a lawyer through the National Academy of Elder Law Attorneys, or visit LawHelp.org to find free or reduced-cost legal aid programs in your community.
Not only does POA give you the power to make medical decisions for your loved one, but it’s also necessary for them to participate in medical research, as well as for you to obtain documents on their behalf. For example, a POA is needed to sign up on PicnicHealth so your loved one can help contribute to breakthrough research while keeping their medical records and documents in one easy-to-access place.
Living Will / Advance Directive
A living will records a person’s wishes for how and when they’ll receive medical care if they’re terminally ill or near end-of-life. It may include how long to prolong the life of your loved one if they’re incapacitated, as well as their religious preferences.
Similarly, an advance directive is a set of instructions that outlines your loved one’s healthcare wishes—but it isn’t limited to end-of-life. An advance directive goes into effect during medical events such as dementia, stroke, or coma. For example, this document may include a do-not-resuscitate (DNR) order that can be signed by a doctor and put in a person’s medical chart.
List of Recent Medical History
While you may need a lawyer to help draft the above documents, a list of recent medical history is something that you can gather on your own. This kind of list is important to have in case of emergencies, as healthcare providers will need to know the context of your loved one’s care. Be sure to include any surgeries or procedures, as well as a list of all medications, treatment regimens, labs, imaging, and the like. This may seem daunting to gather—but if you’re signed up on PicnicHealth, you have access to these up-to-date details and can pull them easily from your loved one’s Timeline.
List of Recent Medical Team
This kind of list is also handy for emergencies—and once again, you can find all the names of your loved one’s healthcare providers right on the PicnicHealth dashboard. Simply go to the Care Team tab for a list of their specialists, primary care physicians, provider locations, and more. You can even share your loved one’s PicnicHealth medical Timeline with their care team if you so desire.
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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.
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.
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.
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.
Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association
Learn MoreWhen 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.
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.
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.
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.
Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.
Learn More(from 13 patients with LC-FAOD)
38% Female
15 providers / patient
7.5 years of data / patient
(from 13 patients with LC-FAOD)
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