Introduction:

This article is based on the video, Parkinson’s Disease Caregivers: You’re Not Alone. It aims to help you care for someone living with Parkinson’s disease. You may not feel prepared for this role, but there are many resources, and a community of professionals and Parkinson’s caregivers to help you. We will look at the early, middle, and late stages of Parkinson’s and focus on caregiving information and recommendations related to each stage. It will also cover what to expect, how to prepare, and provide strategies to help you along the way.

Let’s start with a quick overview of Parkinson’s disease.

Parkinson’s is a progressive, neurodegenerative disease that occurs when nerve cells in a part of the brain called the basal ganglia become impaired. This causes a decrease in the production of dopamine, which is essential for body movement.

In addition to the “movement symptoms” of Parkinson’s, such as tremors and muscle rigidity, many people will also experience a wide range of “non-movement symptoms.” These may include cognitive and hard-to-manage changes like dementia, hallucinations, and sleep problems.

The average age of diagnosis is 60 and risk increases with age. Keep in mind that symptoms develop slowly over time and can vary for each person.

The exact cause of Parkinson’s is unknown, yet researchers believe it may be due to a combination of genetic and environmental factors. For more information on Parkinson’s see the FCA article: Parkinson’s Disease and Caregiving.

Parkinson’s Disease – Early Stage

In the early stages of Parkinson’s, people usually need more emotional support than hands-on care. You may notice some or all of the following changes:

• tremors
• muscle rigidity
• changes in posture
• facial expression changes
• changes in speech.

Typically, symptoms will begin on one side of the body and progress to both sides over time.

These symptoms – and receiving a diagnosis – can be very distressing. The person with Parkinson’s may be in denial of their diagnosis. You may have to take the lead in researching information and resources. Newly diagnosed individuals and their families can join a support group to help ease anxiety and learn pro-active coping skills. Individual counseling may also be very helpful.

Education

Parkinson’s disease can be difficult to diagnose as there is no definitive test, and other illnesses have similar symptoms in the early stages. Some individuals may receive an initial diagnosis of Parkinson’s, but additional testing or future symptoms may result in a different diagnosis.

Get started by connecting with medical providers who understand and have experience with the disease. The Parkinson’s Foundation website provides information on Centers of Excellence across the United States. Social workers can help connect you to resources and referrals in your community and provide you with supportive counseling.

Although there are no cures for Parkinson’s disease yet, there are ways to treat and manage symptoms. Surgical procedures, such as Deep Brain Stimulation or DBS, may be recommended for some. You may also want to explore current research opportunities where Parkinson’s-specific trials are being conducted.

If you are related to someone with Parkinson’s, you may be wondering if you should get tested. Only 10-15% of Parkinson’s cases are believed to be genetic. If you do decide to get tested, meet with a genetic counselor who can provide information, support, and guidance.

Emotional Support

How are you feeling about your loved one’s diagnosis? Sadness, anger, fear? Disbelief? Perhaps you feel relief at finally having an explanation for the unusual changes you’ve been observing. All of these feelings are normal.

As a caregiver, you may experience many different emotions over time. Feelings of loss and frustration can be profound. Two types of loss common for caregivers are “ambiguous loss” and “anticipatory grief.”

• Ambiguous loss is the loss we experience when someone is “there but not there” – when they’re not the same person they used to be.
• Anticipatory grief occurs when we know a loss is coming, and we start grieving before it occurs.

In the early stages, it’s very important to find support and ways to cope with these feelings–even before you think you need it.

Although there is no one right way, there are healthy ways to deal with your feelings of anxiety, loss, and grief. Here are a few:

• Write in a journal to name and express your feelings. Many caregivers find journaling, or writing in general, useful – even therapeutic.
• Physical exercise
• Prayer
• Meditation,
• Relaxation exercises
• Support groups
• Talking one-on-one with a friend or counselor
• Creating new rituals for self-care

These activities can help you stay well and build resiliency. Engaging in activities that are fulfilling and decrease stress should be a priority.

Parkinson’s can affect everyone in the family in different ways. This includes you as the caregiver, the person with Parkinson’s, family, and friends. Each will require their own kind of support.

Both you and the person you care for will have to learn to balance Parkinson’s symptoms and care needs with the desire to be independent. You both should keep dates with friends, keep up with interests and hobbies, and do things that fill you with joy.

Legal and Financial Planning

One common question that caregivers ask, is what will happen to the person I care for if something happens to me? One thing you can do is make sure that your own legal and financial documents are updated.

This is also a good time to encourage the person with Parkinson’s to make or update their legal and financial arrangements including making arrangements for dependents, especially before they experience significant cognitive changes. For them it’s best to speak with an attorney who specializes in disability and estate planning. Key documents to complete include:

• Durable financial power of attorney
• Advance Health Care Directive
• Will and/or trust
• POLST form which specifies end-of-life medical intervention.

This is also a good time for the person with Parkinson’s to sign a release of information, allowing medical staff to speak with you and others who are closely involved in their care.

If you or the person with Parkinson’s is employed, it is important to contact the Human Resources department to learn about eligible benefits, such as long-term disability and paid and unpaid family leave options.

Securing financial help from the government can be a challenging and confusing process. Seek out experts to help you early on. Consult with an attorney, a community organization or legal aid office that specializes in Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). They can also help you navigate Medicare and Medicaid.

A person is eligible for Medicare when they turn 65, or if they become disabled earlier and have been receiving SSDI for 24 months. It’s important to remember that Medicare does not pay for long-term care, such as care provided in an assisted living, skilled nursing facility, or for private care at home.

If the person you care for is a veteran, applying for benefits and enrolling in the VA health care system should be done as soon as possible. Your local Veterans Service Organization can offer guidance about service-connected Parkinson’s and assist with completing necessary paperwork.

Parkinson’s Disease – Middle Stage

In the middle stages of Parkinson’s, tremors, rigidity, and other movement symptoms will progress. The individual may experience more problems with walking and balance issues that will make falls more common. This can be coupled with slower mental processing, language, and with visual-spatial difficulties. You’ll need to help with basic personal care such as bathing, dressing, and brushing teeth.

Emotional Support

As symptoms progress, it’s common for caregivers to feel isolated while dealing with new stages of grief and loss. Too often, just when you really need more support, friends and even family may step back, unable to witness your pain and your loved one’s decline. They may not understand the disease or how they can help. Reach out with suggestions or ways for them to be supportive. Contact a social worker for helpful resources or to facilitate a family meeting. This may also be the time to bring in outside assistance, whether from family, friends, or a hired caregiver.

If you’re feeling depressed, anxious, or angry; know that these emotions are hard to deal with on your own. Talk with your doctor or counselor. Attend a support group or retreat designed for caregivers. The Parkinson & Movement Disorder Alliance (PMD Alliance) website contains lists of support groups for both caregivers and people with Parkinson’s.

There are effective ways to help you cope and feel better. Don’t wait to ask for help! If you need more time-off, there are out-of-home respite options for your loved one, such as adult day programs or a short-term stay in a care facility.

Too often caregivers don’t feel they need a break until they experience a crisis or problem with their own health. We encourage you to seek respite early and as often as you need it. Some signs that you need more support and time to care for yourself include:

• health issues, like a rash or an ache that won’t go away,
• rising blood pressure,
• chronic health conditions that are getting worse,
• trouble sleeping,
• feeling anxious, irritable and less patient,
• turning to alcohol or drugs to relieve stress.

It may cause you anxiety to take time for yourself because you worry something bad will happen. Or you feel guilty. The truth is that it’s essential to confront these concerns and make time to step outside of the caregiver role for both you and the person you care for.

Be sure to prioritize your physical and emotional well-being!

Safety

Because Parkinson’s causes unsteady movement, it’s important to identify potential hazards that may exist in the home. A Physical Therapist (PT), can complete an evaluation of the person, assess the home for safety issues, and suggest modifications, such as bathroom grab-bars for getting in and out of the shower. PTs can also recommend other types of equipment and ways to prevent falls and injury.

Staying active is vital for individuals with Parkinson’s disease. A range of Parkinson’s- specific exercise classes are available across the country and online, including boxing and dance classes. The PMD Alliance website provides a list of virtual exercise groups.

An Occupational Therapist, or OT, will help promote independence and safety for the person living with Parkinson’s. They can suggest assistive devices and tips to help with daily activities and personal care.

For safety outside of the home, we recommend the person with Parkinson’s carry an ID card or wear a bracelet that specifies their health condition and who to contact in an emergency.

You should also carry identification that you are a caregiver for someone who may need assistance if you become injured or unable to communicate.

Medical Care and Nutrition

As the disease progresses, swallowing issues, along with speech and voice disorders, can have a significant impact on the person’s quality of life.

Speech Therapist: It is recommended that the person you care for get a baseline speech evaluation, along with speech therapy, to help with difficulty talking and swallowing.

Dietitian: A dietitian can provide guidance on proper nutrition and create individualized meal plans as food can impact medications and non-movement symptoms. Dietitians can also help with planning the timing of meals and medications.

Palliative Care helps to improve the quality of life for people who have debilitating chronic health conditions. Palliative care teams can help manage symptoms and reduce suffering. A person does not have to be in hospice to qualify.

Contact the medical team for referrals to any of these services. And if it’s difficult to attend an appointment in-person, ask providers about tele-health or virtual visit options.

Parkinson’s Disease – Late Stage

This is when the person will need assistance with pretty much all of their personal care. As symptoms progress, they will require assistance walking, and eventually it will be impossible to even stand. Some individuals may experience hallucinations and delusions, as well as other non-movement symptoms.

Talk with your medical team about all the ways to help reduce the person you care for’s pain or suffering and increase their comfort. Remember, you are their connection to quality care and services when they can no longer advocate for themselves.

There may come a time when the person living with Parkinson’s requires a higher level of care than can be provided at home. For some, the transition to a nursing facility can be a tough but necessary decision. You may feel like you’ve failed or you’re breaking a promise – even when you know that moving them will provide better care and safety.

If you’re considering a skilled nursing facility, it’s helpful to get a list of local options and be sure to visit. Even if the person you care for is living in a skilled nursing facility, your role as a caregiver does not end. Your presence and advocacy will help ensure that proper care is provided.

Hospice and End of Life Care

Hospice services are designed to support individuals towards the end of life. Care can be provided wherever the person resides – including at home or in a care facility. This includes visiting nurses, pain management, and personal care. Hospice can also provide spiritual, grief, and bereavement support as well as respite for family caregivers.

Hospice is a Medicare benefit and individuals are eligible when a doctor has determined a patient has 6 months or less to live. Ask your doctor for a referral to begin services, or hospice can assist you in getting a referral if the patient is eligible.

Conclusion

Find out more about all the topics addressed in this article through the accompanying Parkinson’s Disease Caregiver Resource Guide, by speaking with the Parkinson’s medical team, and by contacting your local Parkinson’s support organization.

We hope the information included in this article will give you a starting point for what questions to ask and what resources to request. Finally, when you finish reading this article, if you can, remember these important key take-aways:

• Get support early.

• Connect with Parkinson’s specialists.

• Identify local resources.

• Review your medical, legal, and estate plan preferences, and update them as needed.

• And make time to care for yourself!

Resources

Parkinson’s Disease Caregiver Resource Guide
Parkinson’s Disease Caregivers: You’re Not Alone (video)

Family Caregiver Alliance
National Center on Caregiving
(415) 434-3388 | (800) 445-8106
Website: www.caregiver.org
Email: info@caregiver.org
FCA CareNav: https://fca.cacrc.org/login.
Services by State: https://www.caregiver.org/connecting-caregivers/services-by-state/.

Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research, and advocacy. Through its National Center on Caregiving, FCA offers information on current social, public policy and caregiving issues, provides assistance in the development of public and private programs for caregivers, and assists caregivers nationwide in locating resources in their communities. For San Francisco Bay Area residents, FCA provides direct family support services for caregivers of those with Alzheimer’s disease, stroke, ALS, head injury, Parkinson’s disease, and other debilitating health conditions that strike adults.

This article was underwritten with funding from Adira Foundation with additional support from other generous donors and produced by Family Caregiver Alliance.