Planning Ahead

There are a lot of day-to-day tasks and responsibilities that are necessary to help you care for your loved one with Parkinson’s disease (PD), but it is never too soon to begin planning for the future.

It is okay if you feel like you need to get a handle on the present before the future, but it is important to have these discussions sooner rather than later. Planning can seem extremely overwhelming, so we broke it down into sections for you:

Logistical Planning

Caring for someone with Parkinson’s means keeping track of medical records, medical and family contact lists, financial documents and other critical information. Below are some tips on what information to gather and how to keep it all organized.

Getting Organized

Consider creating a binder with the following main document categories:

Medical
Family
Insurance/Property
Finance

Even though you can now keep digital files, it can be useful to have a physical copy of key documents 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 of emergency.

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)
- Allergies
- Surgeries (and year)
- Blood type
- Advance directives
- Names and phone numbers of two emergency contacts (use the My Contacts worksheet)
In this context, “family” can include any contacts and information relevant to your daily life. Include:
- Names and contact information for family members, close neighbors, friends or coworkers who need to be notified in case of emergency
- In-house locations of important items such as an extra house keys, electrical breaker box, water cut-off, thermostat and alarm system.
- Names and contact information for family service providers:
  - Attorney
  - Accountant
  - Banker
  - Broker or investment counselor
  - Clergy
  - Doctors, dentists, veterinarian
  - Home and appliance service people
  - Insurance agents
  - Pharmacy
  - 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
  - Passports
  - Disability verification
  - Advance directives
  - Durable power of attorney (POA)
  - Instructions regarding funeral, burial, cremation, etc.
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.)
- Health
- Homeowner
- Automobiles, boats, recreational vehicles
- Disability
- 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:
- 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. However, it is important to regularly update information regarding:
- 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.

Emotional Planning

You will experience a range of emotions over the course of your loved one’s Parkinson’s journey. Shock and denial at diagnosis, or validation that your suspicions were confirmed; fear of the loss of control; frustration as symptoms worsen; satisfaction from caring for a loved one; concern about finances; shame because you wish it were all over; exasperation, relief, anger, sadness, joy. As the disease progresses and your role as caregiver evolves, you will have to come to terms with the disease again and again.

Caregiving is a demanding job. There is always something else that could be done, so feelings of guilt that you cannot do everything are normal. Ask yourself if doing more is necessary or possible. Accept your limits.

As Parkinson’s progresses, it is hard to let go of the hope that your loved one might return to his or her former self or that things will go back to “normal.” Even when you have the diagnosis, know the facts and witness the effects of the disease, you might still feel like your relative could be the one who beats the odds.

In addition, family dynamics add complexity, and past feelings can affect how you respond to situations now. The historical relationship between care partners has a huge impact on how care is given and decisions are made. Real-life examples illustrate this point:

Sam and Barbara were both in their mid-80s when Sam was diagnosed with Parkinson’s disease. She did not have a tremor, but her stiffness and slowness made it hard for her to get around or to help Barbara in caring for their home. About three years after being diagnosed, Sam fell and broke her hip. Rehabilitation did not bring her back to her pre-fall level of independence. After much discussion, Sam and Barbara decided that Barbara could no longer care for her at home and she remained as a resident in the rehabilitation/skilled care facility. Barbara felt sad that Sam was no longer at home with her, but when talking to her support group members told them she realized it would have been dangerous to both of them to bring her back to the house. Sam passed away about 13 months later, and Barbara continued to be satisfied with the decision they had made although she missed her terribly after their many long years together.
James is in his mid-60s was diagnosed with dementia with Lewy bodies (DLB). He was a former county politician with connections everywhere. With his DLB, he was a subject of pity, while his wife Alice was often criticized for her seemingly “cold” response to him and willingness to place him outside the home as soon as he met skilled care requirements. In a counseling session, she revealed that he physically abused her frequently during their marriage. When she tried to report him, his police connections looked the other way or told her it was her fault for provoking him. When it came time to provide the type of intense care he would have required, Alice knew she couldn’t do it. She had insight into the effect of the past relationship.
Juan is in his mid-50s and lives with his mother, Gloria, who is in her 80s and has advanced PD and Parkinson’s dementia. Gloria is bed-bound. He does all the care for her, even the most intimate things. He refuses to accept hospice and continues to search for something that will “make her better.” Juan admits he is not ready to let her go or even to accept comfort care. When she dies, he will have no life, since he has no job, no friends and no interests outside of caring for her. He has no insight into the possibility that he is forcing her to live in circumstances that may not be the best for her, but meet his needs.

Ultimately, caring for yourself mentally and emotionally requires understanding the changes in the person you’re caring for and adapting to them. The relative or friend you’ve always admired for his strength might be showing weakness; on the other hand, his perseverance and optimism in the face of debilitating illness might demonstrate strength you never knew he had. Your emotions throughout the journey will be varied, and some might surprise you.

It is important to be honest with yourself about what you feel and to have an outlet for your emotions. Some of these emotions will be appropriate to share with your loved one, but some will not. Make sure you have a person or group you are comfortable sharing your feelings with, so you can freely express everything that is on your mind.

Join a Support Group

If you need help locating a support group, contact the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636) or helpline@parkinson.org.

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Palliative Care

Just as a healthy diet and ample exercise can help you live optimally with Parkinson’s, so can palliative care. Palliative care — sometimes mistaken for end-of-life, or hospice, care — is instead holistic, team-based treatment designed to support a person’s quality of life from the point of their diagnosis onward.

Studies have shown that people who receive palliative care experience:

Less pain and other adverse symptoms like nausea or shortness of breath
Better communication with their doctors and family members and experience more emotional support
Receiving care is more in line with their wishes and meets their emotional and spiritual needs

Palliative care is usually provided by a team of professionals that may include doctors, nurses, social workers, chaplains, pharmacists, nutritionists, counselors and others. Most insurance plans cover all or part of the palliative care treatment costs. If the person with PD is an enrolled veteran, palliative and hospice care are part of the Standard Medical Benefits Package if the need for clinical service requirement is met.

If you are worried about the cost of this type of treatment, the social worker from the palliative care team can help answer your questions. The palliative care team can help people with PD and family members make decisions about treatment options in advanced disease and can segue into hospice care if that is desired.

One major benefit of palliative care is the emphasis on taking the time to understand your treatment preferences and goals. This process puts more control into you and your loved one with Parkinson’s hands.

Advance Care Planning

Advance care planning is a valuable process for you and your loved one to align your values, wishes and preferences with medical care you wish to receive.

When starting the conversation, discuss a situation where your loved one would be unable to make their own medical decisions. Advance care planning is recommended for all adults, in all stages of health.

When to Plan

It is never too early to plan. It is ideal to initiate an advance care planning discussion when your loved one 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.

The Conversation Project can help you and your loved one think about and begin to discuss your wishes for end-of-life care.

Advanced Parkinson’s

When a person with PD has problems with mobility and cannot complete activities of daily living without help, this is generally known as advanced Parkinson’s. Explore our articles and tips created to help care partners navigate this next stage.

Help with Activities of Daily Living Planning for End of Life

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 sharing their thoughts and wishes.

It can be helpful to include a social worker, 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.

Sometimes people work with a lawyer to finalize these documents, but this should be the final step, not the first step, because it is essential that you, your love one, and their healthcare team all understand your loved one’s preferences.

Read our Legal, Financial & Insurance Articles

How to Start the Process

One way to jump-start the process is to look at the Advanced Directive forms in your state. Consider printing the form and bringing it to your next medical appointment. Ask your doctor to talk to you about their advance care planning process or ask them to help you find a social worker to discuss it with.

Visit the AARP Advanced Directive Forms page to find the form used in your state.