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. Watching a loved one live with Parkinson’s can be painful, but there are ways to help them. Learn what to do, avoid, and how to maintain your own well-being.
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
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: Get rid of any throw rugs, footstools, or other objects that can be a tripping hazard. Don’t let any 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 in the house are bright and clear. Leave night lights on, so the person can make their way to the bathroom at night if they need to.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 and shift their living quarters to the ground floor. Consider installing ramps for stairs that are unavoidable.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. Try to 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. It can be helpful to keep tools such as button aids, zipper pulls, sock aids, long-handled shoehorns, and dressing sticks handy for them to use. Alternatively, you can replace their clothes and shoes with options that have velcro or elasticated closures to make dressing easier.
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.
These are some of the questions you may have if someone in your life has been diagnosed with Parkinson’s disease.
A Word From Verywell
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.
There is no cure for Parkinson’s disease yet, but research is underway.The condition can be managed with medication and other forms of treatment, often quite successfully. People with Parkinson’s disease have almost the same life expectancy as those who don’t have the condition.The symptoms of Parkinson’s disease can worsen with time and compromise the person’s independence. Some people may experience severe disability; however, most people only experience mild to moderate disability.Parkinson’s disease does not cause people to die; however, it can strain the body considerably and make the person vulnerable to other infections that can be fatal.
American Parkinson’s Disease AssociationMichael J. Fox Foundation for Parkinson’s ResearchParkinson’s FoundationParkinson’s Resource Organization
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.
