Parkinson’s disease is a progressive condition, meaning it worsens over time. Because of motor symptoms like tremor and stiffness, and non-motor symptoms such as depression and speech changes, people with this condition often rely on others for help.
This is where a caregiver comes in. Caregivers can be someone close to the person with Parkinson’s, like a partner, child, sibling, or close friend.
Caring for someone with Parkinson’s disease can be rewarding, but it’s also challenging. As this disease progresses slowly, you may be in this role for many years. You need to be prepared for the long haul.
It’s important to know what you’re up against and how caregiving might affect you.
Parkinson’s disease can affect many parts of someone’s life, from their movement to their ability to speak and eat. Your level of responsibility will depend on your loved one’s disease stage and how well they can care for themselves.
Here are some things you might do as a caregiver:
- take the person to doctors’ appointments and help them communicate with their medical team
- refill prescriptions and check that your loved one takes all of their medications on schedule
- keep track of Parkinson’s symptoms and drug side effects to report to their doctor
- help them get around safely without falling
- manage household chores such as cleaning and paying bills
- prepare meals and help your loved one eat, making sure they don’t choke
- assist with daily grooming tasks like bathing and dressing
- take them out for exercise and social interaction
- facilitate communication if they have trouble speaking and writing clearly
- help them remember important dates and events if they have memory issues
- calm them when they have symptoms like hallucinations and delusions
- manage their finances, including health insurance, medical bills, and expenses
- be patient and supportive
Caregiving can be a full- or part-time role. Your time investment depends on how much help your loved one needs and how much responsibility you’re willing to take on.
If you already work full-time or have children at home, you may need to delegate some of the caregiving duties to other family members, friends, or a paid caregiver. Do an assessment of the person’s needs and calculate how much work you can handle.
Caring for someone with Parkinson’s disease can be stressful and time consuming. It can also have profound effects on your mental health.
About 40 to 70 percent of general caregivers experience significant stress. Half of these caretakers also meet the official criteria for depression.
The challenge of caregiving increases as the disease gets more severe. The more care the person needs, the more of a load the caregiver has to bear, and the more it impacts their mental health,
First, be honest with yourself and others about how you’re feeling. If you’re experiencing stress, anxiety, or depression, talk to someone. You might start with the people closest to you, like your partner, siblings, or friends.
Join a support group for Parkinson’s caregivers. You can find one of these groups through an organization like the Parkinson’s Foundation or the Family Caregiver Alliance. You’ll meet people there who understand what you’re going through and who can offer support and advice.
Make time each day to practice relaxation techniques like these to ease stress:
- sitting in a quiet place and breathe deeply for 5 to 10 minutes
- taking a walk
- listening to your favorite music or watch a funny movie
- practicing yoga or meditation
- calling a friend
- getting a massage
- taking a warm bath
If these techniques don’t help and you still feel overwhelmed, get advice from a professional. You might see a counselor, therapist, psychologist, or psychiatrist.
Trying to do everything yourself can be overwhelming. Lean on a support team, which can include:
- doctors and nurses
- family, friends, and neighbors
- members of your place of worship
- a local senior center or adult day care center
- meal delivery services
- transportation services
- paid in-home care
- a visiting social worker
Palliative care can sometimes be helpful, too. Although it’s often confused with hospice care, they aren’t the same. Palliative care offers support for symptoms and can help improve the quality of life throughout the course of someone’s disease.
Many hospitals have palliative care teams that can ease the burden on you by helping your loved one feel better.
Caregiver burnout happens when your duties push you to the point of exhaustion. You can reach this stage when you spend so much time caring for the other person that you neglect yourself or you put too many demands on yourself.
Signs of caregiver burnout include:
- feeling sad, irritable, or hopeless
- losing interest in activities you used to love
- avoiding friends and family
- losing or gaining weight
- sleeping too much or too little
- feeling physically or emotionally exhausted
- getting sick more often than usual
If you experience any of these signs, it’s time to get help.
Here are a few tips to help you avoid caregiver burnout.
- Learn everything you can about Parkinson’s disease. You’ll be better equipped to manage your loved one’s care if you know what to expect and understand what strategies are most helpful.
- Don’t try to take on every aspect of the person’s care yourself. Make a list of tasks that need to be done. Then, delegate them to friends, family, and members of your community who are willing to help. You can hire people to help around the house so you don’t have to do it all yourself. Your insurance may also pay for part-time caregivers for your loved one with Parkinson’s disease.
- Stay organized. Keep a binder of doctor’s names, medications, and other important information you’ll need on a daily basis.
- Don’t neglect your own health. You can’t be any help to your loved one if you get sick. Eat well, exercise, and get enough sleep. Keep up with all of your medical appointments.
- Find your joy. Hold on to the parts of your life that are most important to you — such as your job, family, and hobbies. Set aside time each day to do something just for you.
Caring for someone with Parkinson’s disease is a big job. It can take up a lot of your time and it may cause you physical and emotional stress if it becomes overwhelming.
The key to making caregiving a positive experience is to care for yourself in the process. Be realistic about what you can and can’t do for your loved one. Get help when you need it from the people in your social network or from trained professionals.