Simple steps ease gathering and organizing key information.
How Do I Get Organized?
Caring for someone with Parkinson’s disease (PD) means keeping lots of medical records, medical and family contact lists, financial documents and other information organized and handy. To avoid getting overwhelmed, below are some tips on what information to gather and how to keep it all organized.
Consider creating a binder with the following main document categories: Medical, Family, Insurance/Property and Finance. Even though you can now manage nearly everything online, it can be useful to have a physical copy of everything in one place. Wherever you choose to maintain your records, make sure that a close family member or friend knows where to find them in case they are needed.
And remember, it’s not all about the person with Parkinson’s. Make sure to keep your records organized, too!
It is important to keep medical information up-to-date so first responders can access it in case of an emergency. Keep these records (for both you and your loved one) updated and in a location that is easily visible and accessible. Some people keep it near their medications, as emergency personnel will often seek these out if called to your home.
Information to include:
- Date information was last updated
- Name and date of birth
- Contact information: address, phone number(s), email address
- Medical conditions
- Current medications (prescription and over-the-counter), with prescribing physician, purpose, dosage and frequency (use the Medications and Schedule worksheet)
- Primary and specialty care providers and contact information (use the My Contacts worksheet)
- Surgeries (and year)
- Blood type
- Legal documents in which you spell out your end-of-life wishes. These often come in two parts. The first, sometimes called a living will, advises your doctor and healthcare team of your wishes for end-of-life care, such as whether you want to be resuscitated or placed on a respirator if your heart or breathing stop. This decision is referred to as DNR, Do Not Resuscitate, or AND, Allow Natural Death. The second part of an advance directive, often called a medical power of attorney, designates a person you want to make your healthcare or end-of-life decisions should you become unable to do so for yourself.
- Names and phone numbers of two emergency contacts (use the My Contacts worksheet)
In this context, “family” is broadly defined, including contacts and information relevant to your daily life.
Information to include:
- Names and contact information for family members, close neighbors, friends or coworkers who need to be notified in case of emergency (use the My Contacts worksheet)
- In-house locations of important items such as an extra house keys, electrical breaker box, water cut-off, thermostat and alarm system. Just asking, “Where is the fire extinguisher?” may bring things to your attention, such as no working fire alarms in place.
- Names and contact information for family service providers, such as the following:
- Broker or investment counselor
- Doctors, dentists, veterinarian
- Home and appliance service people
- Insurance agents
- Utility company
- Copies of important documents:
- Updated wills and trusts
- Birth certificates
- Social security cards
- Military discharge papers
- Marriage license, any divorce or separation papers
- Disability verification
- Advance directives
- Durable power of attorney
- Instructions regarding funeral, burial, cremation, etc.
Insurance and property documents
Write down the location of original insurance policies, deeds and mortgage papers in your home or keep them in a bank safe deposit box. If maintained at home, keep these documents in a fireproof safe.
Insurance information checklist:
- Life (including any accidental death policy in place at work, credit union, etc.)
- Automobiles, boats, recreational vehicles
- Long-term care
- Professional liability coverage, if applicable
Property information checklist:
- List and locations of mortgage papers on any real estate property
- Titles and license receipts for automobiles, boats, recreational vehicles
- Receipts for any major property improvements
- Receipts for any major vehicle repair or maintenance expenses
Optional business documents:
If you own a business, you might want to include the following:
- Name and type of business
- Location of keys
- Structure for tax purposes (sole proprietorship, partnership, corporation, etc.)
- Contact information for partners and key associates
- Contact information for accountants, attorneys, bank officer
- Business account numbers and name of bank officer knowledgeable about account(s)
- Copies of documents such as tax records, employee and vendor contracts
Financial information is particularly sensitive, so you may choose to keep these records separate from the medical, family and insurance and property documentation. However, it is still important to regularly update information regarding the following:
- Bank accounts and persons authorized to sign transactions
- Safe deposit boxes
- Credit union accounts
- Location of checkbooks and account records
- Credit and debit cards, including location of payment records for the previous year
- Investment accounts
Keep account numbers and passwords in a safe location that you share with a trusted family member or friend.
Advance care planning is the discussion and planning for a situation when you are unable to make your own medical decisions. It is recommended planning for adults of all ages and stages of health and is a valuable process to align your values, wishes and preferences with medical care you will receive.
Use advance care planning to create legal documents called health care directives or advance directives. The living will outlines instructions and guidelines for family and medical professionals to follow if you are unable to make decisions on their own. It provides others with information about your wishes, relieving the burden of needless speculation. A power of attorney for health care or medical power of attorney, names someone to make medical decisions for you should you lose the ability to make your own decisions. This person must make health care decisions according to your wishes and in your best interest.
When to Plan
Advanced Parkinson’s symptoms can result in complications related to immobility, falls and difficulty swallowing. It is ideal to initiate an advance care planning discussion when the person with Parkinson’s can fully participate and share their wishes regarding what types of medical care they want to receive in the event of life-threatening symptoms. It is never too early to plan. The Conversation Project can help you and the person with Parkinson’s think about and begin to discuss your wishes for end-of-life care.
Who Should Be Involved
Frank, open discussions can be difficult. Not all people are comfortable talking about this delicate subject with others. Although it is not always easy, many people report a sense of relief and optimism after having the opportunity to share their thoughts and wishes.
It can be helpful to include a social worker, lawyer, chaplain or other medical team representative with experience in advance care planning in your family’s discussion. These professionals can also help create the necessary documents and assist with obtaining the necessary signatures and authorizations required to create a legal document. To get you started, CaringInfo provides advance directives and instructions for each state. Share health care directives with your medical team when complete.
Some regions in the United States use a POLST (Physician Orders for Life-Sustaining Treatment) form to communicate information to medical professionals. This signed medical order communicates patient preferences to health care providers during an emergency. People with complicated medical problems who have limited life expectancy, or would like to set limits on care received, may want to create one. It is immediately accessible and travels with the patient between their home and other care settings. To see if POLST forms are used in your area and if your loved one with Parkinson’s should have a form created, check with your medical provider.
Caregivers often wish to understand how a person’s journey with Parkinson’s will end. There are no clear answers to these questions. Every person’s Parkinson’s journey is unique. Although no one can say with certainty, continued weight loss, recurrent infections and withdrawal from daily interactions with others may signal impending changes. Maintain open communication with your physician and the medical team, so they can answer questions and offer support as needed.