Caring for someone with Parkinson’s

Learning about Parkinson’s early helps you join health care discussions and give emotional and practical support as needs change.

People with Parkinson’s and their care partners rarely adjust at the same pace. You might be ready to talk about changes before they are, or the other way round.

Taking over tasks can feel kind, but it can also take away confidence. Ask what they want help with, and let them set the pace when it’s safe.

• Becoming more easily frustrated with your loved one
• Feeling too tired to look after yourself
• Forgetting more tasks than usual

Strain can build for a long time without you noticing. Having someone to talk to, and a second care partner to share the load, helps.

Burnout can include a change in attitude, from positive and caring to negative and unconcerned. It can happen when you don’t get the help you need, or try to do more than you can.

The person you care for is only doing as well as you are. If you don’t look after yourself, you won’t be able to look after them.

A free public service that connects older adults, families and caregivers to local help, including your Area Agency on Aging. Visit eldercare.acl.gov.

Friends and family are often willing to help, even from far away. Have a few options and a backup plan so no one gets worn out.

Pick a time that suits you and use it for something you’ve missed, like a class, a walk or coffee with a friend.

It can be hard to watch your loved one refuse things you both know help, like exercise. Remember that apathy is a symptom and they aren’t simply being lazy.

What can help

• Doing activities together
• Gentle routines and reminders
• Regular social contact
• Support groups

Parkinson’s can reduce facial expression and make the voice quiet or flat. Ask how they feel instead of guessing from their face.

Depression in Parkinson’s is often missed. You can help by mentioning mood changes at appointments, with their permission.

Tell the care team about any hallucinations or delusions, even if they don’t seem bothersome. Sudden confusion can be delirium, which may be caused by an infection or a treatment change that needs attention.

The Parkinson’s Foundation suggests reassurance, good lighting and validating the person’s experience.

You could say

• “I don’t see it, but I believe it feels real to you.”
• “Let’s turn the big light on.”
• “That sounds frightening. I’m right here.”

Delusions such as jealousy or feeling persecuted can lead to agitation or aggression. Don’t argue. Give space, contact the care team, and call 911 if anyone is unsafe.

Offering two options instead of many, and having one conversation at a time, can help when thinking is slower.

Keep a few things that are just yours together, like a TV show, a walk or Sunday breakfast, and keep health talk out of it.

• “Can we talk about how we’re sharing things at home?”
• “I want to keep doing this with you. I also need a break sometimes.”
• “What matters most to you as things change?”

Parkinson’s and low mood can affect sexual function and desire. It’s okay to raise this with a doctor or counselor.

Many people make this promise. In later stages, care can involve heavy lifting and skills you may not have. Needing help is not breaking faith. It’s making sure they get the care they need.

A change of caregiver can be hard on everyone. Teach new helpers about Parkinson’s, daily routines and what matters to your loved one, and update the plan as needs change.

The Parkinson’s Foundation includes palliative care and advance care planning in its planning-ahead resources for care partners.

Free help for care partners and families too, including caregiver concerns and local support groups. English and Spanish, Monday to Friday, 9 a.m. to 7 p.m. ET.

Information, local chapters and support groups, including for care partners.

Connects older adults, families and caregivers to trusted local services, including your Area Agency on Aging.

For you or your loved one, any time things feel too much or there are thoughts of suicide.

Families everywhere need support from health, social and legal services. Your national Parkinson’s or carers’ organization is a good start, and findahelpline.com lists emotional support lines.