Caring for Someone With Parkinson's Disease: What to Know

Does a loved one in your life have Parkinson’s disease? You’re not alone. Over 10 million people around the world are living with this condition. Parkinson’s disease is a neurological movement disorder that inhibits the brain’s ability to control movement.

Unfortunately, Parkinson’s disease is a progressive condition that has no cure. However, it can be managed with treatment, often for a significant amount of time. Over time, a person with Parkinson’s disease may become increasingly dependent on their caregivers.

Recognize Parkinson’s Disease Symptoms in a Loved One

Close friends and family members are often the first to notice the symptoms of Parkinson’s disease. However, these changes are easily confused with the typical signs of aging, particularly in the early stages.

The symptoms of Parkinson’s disease include:

• Tremors or shaking in the hand or jaw
• Jerky, rigid movements
• Bradykinesia (slow movements)
• Muscle cramps and contractions
• Difficulty moving and maintaining balance
• Reduced facial expressiveness
• Stooped posture
• Difficulty chewing and swallowing
• Soft, hoarse, or monotonous speech
• Dizziness upon standing
• Cramped handwriting
• Trouble sleeping
• Constipation
• Urinary incontinence
• Loss of smell
• Fatigue
• Depression
• Dementia and other cognitive issues
• Hallucinations and delusions

How You Can Help Someone With Parkinson’s Disease

After your loved one has been diagnosed, you might wonder what you can do to help and support them. Learning how to be a caretaker can be a big transition, but there are things you can do to ensure that you are offering the right kind of help. These are some ways you can assist someone with Parkinson’s disease.

Medical Care

Parkinson’s disease can be treated with medication and surgery. It can be helpful for a loved one to:

• Accompany the person to doctor’s visits.
• Make sure the person is taking their medication regularly.
• Report any worsening symptoms or changes in behavior to the person’s healthcare provider so they can adjust their medication and treatment plan accordingly.

Practical Care

People with Parkinson’s disease can have trouble walking and maintaining their balance, which can make them more prone to falling. If you live with someone who has Parkinson’s disease, these are some steps you can take to prevent them from falling and injuring themselves:

• Keep the floor clear: Remove throw rugs, footstools, or other objects that can be a tripping hazard. Don’t let loose wires or cables hang down to the floor. Mop up any spills immediately. 
• Make the bathroom skid-proof: Put in anti-skid mats and install grab bars in the bathing areas.
• Ensure the house is well-lit: Make sure entrances, hallways, and staircases are bright and clear. Leave night lights on so people can find their way to the bathroom at night if necessary.
• Secure the stairs: Check that all the stair treads are secure and none are loose. Install a railing on both sides of the staircase for support. If your loved one has difficulty using the stairs, try shifting their living quarters to the ground floor. Consider installing ramps for unavoidable stairs.
• Consult an occupational therapist: An occupational therapist can evaluate your living situation and suggest ways to make it safer.

Parkinson’s disease can also make everyday activities harder. These are some strategies that can be helpful:

• Plan ahead: Your loved one may take longer to perform simple tasks such as getting dressed due to symptoms such as hand tremors, muscle cramps, and bradykinesia. Plan ahead and budget enough time for them to complete their daily tasks. If they’re on medication, it can be helpful to wait for the medication to kick in before getting started.
• Simplify dressing: Your loved one may struggle with buttons, zippers, and laces. To help, keep tools such as button aids, zipper pulls, sock aids, long-handled shoehorns, and dressing sticks handy. Alternatively, you can replace their clothes and shoes with options that have Velcro or elasticated closures.

Emotional Care

Your loved one will need a lot of emotional support to come to terms with their diagnosis and cope with the changes the condition brings. They may experience a range of emotions, including denial, shock, disbelief, fear, sorrow, anger, and frustration.

These are some strategies that can help you be a source of emotional support for your loved one:

• Educate yourself about Parkinson’s disease: Learning about the condition can help you prepare your loved one for the changes ahead. 
• Encourage them to seek support: Encourage the person to seek therapy or join a support group to help them process their emotions and develop coping skills.
• Plan activities with friends and family: It can be helpful to plan activities where the person can spend time with close friends and family to have their company and support.
• Show your affection: While caring for a terminally ill person can be a lot of work, make it a point to still be affectionate and maintain a bond with them. Add fun elements like songs and jokes to your daily routine with them so that the time spent together is enjoyable for both of you.

What to Avoid As a Caregiver for Parkinson’s Disease

These are some things to avoid while caring for someone with Parkinson’s disease:

• Avoid changing their day-to-day schedule: Stick to a daily routine as far as possible, so the person knows what to expect at each time of day. They may struggle to cope with changes to their routine.
• Avoid distracting stimuli: Try to keep the person’s environment free of distractions, such as loud noises or brightly-patterned decor, as it can be confusing and disorienting.
• Avoid changing their environment: Try not to make any changes to the person’s surroundings, such as changes to the layout of the house. Keeping it the same can help prevent falls caused by disorientation.
• Avoid confusing them: When you communicate with the person, use simple sentences and ask only ‘yes’ or ‘no’ questions. Avoid interrupting them or finishing their sentences. Though it may take them time to complete a sentence, interjecting in between can confuse and frustrate them.
• Avoid losing your patience with them: Parkinson’s disease can cause the person to speak and move slowly. Be patient with them and try to match their pace to make them more comfortable.
• Avoid shouting at them: There may be times when you get angry or frustrated with your loved one. However, try to refrain from shouting at them or speaking to them sharply. The dementia that may accompany Parkinson’s disease can cause them to respond aggressively. Stay calm and be still while you talk to them.

How to Talk to a Loved One About Parkinson’s Disease

These are some strategies that can be helpful while talking to a loved one about Parkinson’s disease: 

• Check in regularly: Check in on the person regularly to ask them how they’re feeling and coping. 
• Use empathetic language: Parkinson’s disease can affect a person’s ability to go about their daily life. The person might find it challenging to do things they once did easily. This can be difficult and frustrating for them. Try to be empathetic when you speak to them, so they feel supported.
• Offer assistance: As Parkinson’s disease progresses, the person may not be able to drive, cook, clean, or care for themselves. Offer them your assistance and let them know they can count on you.
• Encourage them to settle their affairs: If your loved one is in a position to make important decisions, it can be helpful to encourage them to settle their affairs.

Tips for Yourself as a Caregiver

While caring for someone with Parkinson’s disease, it’s also important to care for yourself. These are some tips that can be helpful:

• Allow yourself time to process your emotions: Your loved one may not be the only person struggling to accept their diagnosis and prognosis. You may feel like you’re in an alternate reality, where your whole world has turned upside down. Take the time you need to process your emotions so that you can stabilize yourself and be a source of support for them.
• Set realistic goals: Caregiving can be stressful and take a lot of work. It can be helpful to set realistic goals for yourself and determine your limits. 
• Forgive imperfections: There may be times when you’re unable to do everything you planned to or as well as you hoped to. Be kind to yourself; accept that you’re human and everything may not always be perfect. 
• Explore community resources: It can be helpful to locate medical services, support groups, and other community services for your loved one as well as yourself in advance before you need them.

Takeaways

If a loved one has been diagnosed with Parkinson’s disease, you probably have a lot of emotions to process and a lot of questions about the progression of the condition and your role in it. 

Learning about the condition can help you understand it and prepare yourself for the road ahead. Throughout the process, remember to be kind to yourself and seek help and support when you need it.