The Seven Care Partner Needs

Couple sitting on the couch smiling at each other

Since Parkinson’s disease (PD) progresses differently for everyone, being the care partner to a loved one with Parkinson’s can feel daunting. Worrying about the many possible futures can leave you feeling out of control.

We highlight the seven needs of care partners to help you feel more in control through this process. Addressing each of these needs will help you provide better care for you and your loved one.

Build Your Plan

As you look through the seven needs, know that the goal is not to address them all at once. As you read these needs, start building a plan to help you identify which ones you should tackle first, and who in your life can help with each.

As you build your plan:

Identify your concerns according to the seven needs
Place your needs and concerns in priority order
Think about and write down “action steps” you can take
Discuss your ideas with others
Implement the steps with help from others as needed

If at any point you find yourself feeling overwhelmed, take a break, talk to a friend or contact our Helpline at 1-800-4PD-INFO (1-800-473-4636) to talk to a Helpline specialist.

Learning About Parkinson’s

As you begin to learn about Parkinson’s, it may be helpful to think about it in categories.

- Understanding Symptoms
- Exploring our PD Library for in-depth information
- Learning about available treatments
- Considering the impact of Parkinson’s on everyday life
- Accessing resources
- Exploring your role as a care partner
Not sure where to begin?

Contact Our Helpline

Find Your Nearest Chapter

Managing Your Time

As many care partners know, caregiving is extremely time-intensive. Working towards using your time effectively will help ensure that you can make time for yourself as you care for your loved one.

- Get organized. Make daily and weekly lists of things to do. Aim for manageable and realistic tasks, breaking large projects into smaller, more doable parts.
- Prioritize. Do the most important or difficult things first. Don’t do so much in one area that you cannot be effective in another. Forget unnecessary tasks and delegate those tasks that don’t have to be done by you.
- Master the art of multi-tasking. Save errands to do more of them at one time. Identify small tasks that can be done from anywhere and take them with you to work on when you have downtime or have to wait.
- Schedule breaks. Resting is necessary and productive. Build it into your schedule. There will be times when the pressure gets too great — take a break when you need to, do not wait for exhaustion as your cue.
- Balance flexibility and routine. Routines will help both you and your loved one with Parkinson’s maintain a manageable day-to-day flow. However, it is important to remain flexible. Some things are beyond your control. Many tasks and activities will take longer for the person with Parkinson’s as the disease progresses — there will be days that throw a wrench in your routine.
- Show yourself and your loved one grace. You’re both working towards balancing and navigating life with Parkinson’s.

Prioritizing Self-care, Health and Respite

If you don’t stop to take care of yourself, you will not be adequately prepared to take care of your loved one with PD. There are many ways that care partners can turn small pockets of time into their own self-care and respite time.

Self-care
- Build in quality time for yourself and protect it. Use this time to keep up with your own needs, hobbies and activities.
- Tend to your own health. Exercise leads to better sleep, decreased tension and depression and increased energy. Staying hydrated, eating well, and getting enough rest will help more than you would expect. Keep your regular check-ups and medical appointments.
- Recognize when you are stressed and take time to relax. Only you can set your limits and stick to them. Bring in outside help (family or paid worker) so that you can take a break.
- Think about your future. What goals do you hope to achieve, and how can you work towards achieving them? Can your loved one help you achieve them?
Work on Your Coping Skills

It is normal to experience a wide variety of emotions. Give yourself permission to feel sad or frustrated at times, but also take time to enjoy life. Focus on the present, the needs, and the rewards of the day. Try not to be critical of yourself in moments of anger.

Give yourself credit, not guilt, and try to forgive any mistakes. Use positive self-talk: for example, tell yourself, “I am doing a good job.” Know that it is okay to grieve the losses that you and your loved one may experience.

Research shows that writing — in a journal or other format — can help you work through your feelings and emotions. What causes you to mourn? Where do you find satisfaction and pleasure?

Watch Out For Depression

It is estimated that 20 to 60 percent of care partners experience depression — a rate much higher than the general public. Because it is so common, know the core symptoms of depression:
- Sleeplessness
- Loss of appetite
- Difficulty concentrating
- Feelings of hopelessness and worthlessness
- Feeling slowed down or restless inside
- No interest in once pleasurable activities
- Thoughts of death or suicide
If you think you may be depressed, talk to a doctor or mental health professional about your symptoms. Find a supportive professional that you trust and with whom you feel comfortable.

In most cases, depression is effectively treated with psychotherapy, antidepressant medications or a combination of both, plus activities such as regular exercise, spirituality, supportive social interactions and meditation.

Read More: Caring for the Care Partner

Building Your Support Team

It may feel like you are alone on this journey at times, which is why it’s important to establish a support team before you begin to feel alone. Building a support team of health professionals, friends, family and other loved ones can help prevent isolation and accessibility to help when you need it. Remember, it is a strength, not a weakness, to ask for help.

Emotional and Spiritual Support Networks

Members of your support network can include your and your loved one's care team (physician, nurse, social worker and others), family, friends, neighbors, your support group, clergy and online support forums.
- Seek comfort from your faith, faith community and spiritual practices.
- Find meaning, insight, understanding and your own inner strengths.
- Adjust your expectations: Life and you are not perfect.
- Accept changes as they occur.
- Get help, as needed, including emotional help or counseling. Each person experiences depression in a unique way. It is important to take any symptoms seriously that could signal depression; you should not feel embarrassed or ashamed.
Share the Care

No one person is ever able to meet all an individual’s needs. As Parkinson’s progresses this becomes increasingly true. Begin adding outside resources to your caregiving early on. This makes adding other care sources easier as the disease progresses.
- Start building your “Caregiving B Team.” These key friends and family members can help you in small ways now and establish a relationship with the person with PD, making it easier for them to fill in for you in the future when the need becomes greater.
- If you are considering hiring a paid caregiver, read Getting Outside Help for information on where to look for help, questions to ask when hiring, how to train a paid caregiver and more.

Working on Your Relationship

It is likely that you knew the person with Parkinson’s long before their diagnosis. To have a successful caring relationship, work to maintain your relationship outside of the caregiving role.

Work to maintain open communication. Communicating about Parkinson’s throughout your journey is a critical aspect of living well with the disease.

- Open and honest communication can be uncomfortable or difficult. It can be especially challenging if your loved one is experiencing speech or voice issues. Because of this common challenge, as well as potential cognitive changes, many specialists recommend that you remove or turn off loud and distracting noises when communicating with someone with Parkinson’s. Decreasing distractions can have a surprisingly significant positive impact on the quality of communication.
- Good communication takes intention and adaptation. Allow time to have conversations about each of your PD experiences; time to share your fears, feelings and needs.
- Express love and appreciation as well as concerns and feelings of frustration. Don’t let those feelings transform into resentments.
Adjust Your Expectations

Your loved one’s abilities will evolve over time as the disease progresses. Match your expectations to the reality of your loved one’s actions and abilities.

Share Time Together Outside of Caregiving Tasks

Shared time as husband-wife, mother-daughter, siblings or other relationship — rather than as care partner and care recipient, or even care partners — allows you to enjoy each other and build happy memories.

Your hands-on duties, especially as the disease progresses, might feel like work, but these tasks bring you together. Add some fun to your hands-on care: sing songs, tell jokes, share goals and dreams.

Reviewing Medical, Financial and Care Decisions

Just as there is no one-size-fits-all approach to treating PD, there is no single best approach to making decisions surrounding financial planning, medical preferences and long-term care. Bring up these topics early and often so you are both on the same page.

Assess Your Financial Options

Addressing finances can be a big hurdle — especially if you are already in an uncomfortable financial situation. However, facing this sooner rather than later allows for you to plan as best you can within the realities of your life.

Work together to develop a realistic financial plan early and revisit and revise it annually. Taking a big picture and realistic approach, which you reassess as new information becomes available, will help you to move forward.

Financial planning may be especially important if your loved one has been diagnosed with young-onset Parkinson’s disease (YOPD) because it is likely that one or both of you are still working and were planning to continue working. YOPD does not mean you must stop working but is an added layer to financial planning. If this is your experience, consider exploring all your options with your employer.

Explore Financial Planning and Parkinson's

Discuss Medical Preferences

Many people wait to think about what their medical priorities are until a crisis strikes. Instead, opt to discuss medical preferences early and often.

Every adult should work towards establishing advance directives and understanding their long-term care options. This is true for both the person with PD and the care partner. What should happen to the care of the person with PD should something happen to the care partner?

Discuss All Possible Care Options

Many care partners feel pressure to reassure their loved one that they would never consider certain options, like a skilled nursing facility. While this is understandable, because of the unpredictable nature of the progression of Parkinson’s, we recommend not making promises on this subject.

When making decisions about hands-on care, ask if your decision promotes your loved one’s independence: Do not confuse “caring” with “doing.”

Utilizing Resources

For many care partners, the hardest part of getting help is finding the help you need. The good news is, that there are many types of organizations that offer diverse types of resources, services, information and support.

The Parkinson’s Foundation Helpline

Your first call can always be to the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636). Helpline specialists provide up-to-date information about Parkinson’s, referrals to healthcare professionals, and community resources.

Call us Monday through Friday, 9 a.m. to 7 p.m. ET. or email us any time at Helpline@Parkinson.org.

Healthcare Professionals

There are many different types of healthcare professionals that can help you with different aspects of your PD journey. Learn more about building a PD care team. Learn more

View All Care Partner Resources