Parkinson’s Care: How to Help Someone with Parkinson’s Disease?
Caring for someone with Parkinson’s can be both rewarding and challenging. Parkinson’s disease affects everyone differently, and the way you provide care can make a big difference in their comfort, safety, and quality of life.
As a loved one or Parkinson’s caregiver, your role is deeply meaningful. You’re not just helping manage symptoms; you’re supporting their dignity, comfort, and quality of life. From learning about the condition and exploring Parkinson’s disease support options to lending a listening ear, your support matters more than you may realise.
Still, living with someone with Parkinson’s can feel overwhelming at times, but you don’t have to face it alone. When extra assistance is needed, there are services designed to help, such as Parkinson’s group homes, and even NDIS meal preparation support.
Whether you’re a family member, friend, or professional caregiver, understanding how to help someone with Parkinson’s is the first step to providing meaningful support.
Remember, treatments can help manage symptoms, but the support for Parkinson’s disease from loved ones can make the challenges of the illness easier to cope with.
What Are The 5 Stages of Parkinson's Disease?
Understanding the stages of Parkinson’s disease is an important part of providing the right support for Parkinson’s disease and planning effective Parkinson’s care.
Parkinson’s is a progressive neurological condition that gradually affects movement, coordination, and balance. To help guide treatment and support for Parkinson’s, doctors often describe the condition in five stages, each reflecting different levels of symptom severity and care needs.
Stage 1: Mild Symptoms and Subtle Changes
In the first stage of Parkinson’s, a patient will likely show mild symptoms that shouldn’t have much impact on daily activities such as:
- Slight difficulty walking
- Mild issues with balance and posture
- Movement issues on one side of the body like tremors, rigidity, and bradykinesia (slow movements)
- Small changes in facial expression
Stage 2: Increasing Movement Difficulties
When symptoms from Stage I start to worsen, daily activities can be more difficult and symptoms appear more frequently, but someone at this stage is still able to look after themselves. They may experience symptoms such as:
- Movement issues such as tremors, rigidity, and bradykinesia affecting both sides of the body
- Difficulty walking
- Balancing issues
- Poor posture
- Reduced facial expressions
Stage 3: Mid-Stage Parkinson’s and Loss of Balance
This stage, also known as mid-stage, has more severe symptoms than those at stage II, but people experiencing stage III can also still be independent. Loss of balance and bradykinesia are more pronounced and daily activities such as bathing and cooking can be difficult. Falls are also more of a concern at this stage.
Stage 4: Severe Symptoms Requiring Daily Assistance
At this stage, daily activities such as eating, bathing, and dressing are almost impossible to achieve without support. A person experiencing Stage IV may be able to stand on their own but require assistance to move around.
Daily tasks like eating, bathing, and dressing become difficult without assistance. People may need Parkinson’s support or assisted living arrangements.
Stage 5: Advanced Parkinson’s and Full-Time Care Needs
This is the most severe stage where stiffness in the legs can make even standing without help unlikely. Someone at Stage V will likely be bedridden and require a wheelchair as well as around the clock support. This stage often requires full-time parkinsons care.
They may also experience:
- Delusions
- Hallucinations
- Loss of smell
- Constipation
- Weight loss
- Poor memory
- Vision issues
- Sleep deprivation
Knowing these stages helps caregivers provide better Parkinson’s care at home and prepare for the kind of support their loved one might need in the future.
Practical Tips on How to Support Someone with Parkinson’s
- Learn About Parkinson’s Disease
Understanding the condition empowers you to give better Parkinson’s care. Read resources, join Parkinson’s support groups, or attend doctor appointments to stay informed.Learn all you can about the disease, Inform yourself about what causes it, what the symptoms are, and how to manage it. This will have a huge impact when providing Parkinson’s help at home. By being well informed, you’ll be better equipped to manage the disease with them.
- Assist with Daily Activities
The simple things that we take for granted can take a lot longer to achieve, and people living with the disease may be too proud or embarrassed to ask for help. You can help by offering to take off the burden of running to the store, cooking a meal, picking up medication, or doing chores.Small acts of help that includes assisting with mobility can make a big difference when living with someone with Parkinson’s. Encourage independence when possible but be ready to lend a hand when needed.
- Encourage Regular Exercise
Being active is important for us all, but especially for those living with Parkinson’s.
The Parkinson’s Foundation Quality Improvement Initiative found that exercise is a vital component to maintaining balance, mobility, and daily activities as well as having a potentially neuroprotective effect by helping the brain produce dopamine, an essential neurochemical involved in movement. Activities like walking, swimming, or stretching can even slow the progression of symptoms.
- Be Patient and Compassionate
Parkinson’s can slow movement and speech. Allow extra time for daily tasks and communication, and approach every moment with empathy and understanding.
Make time and don’t rush them. Speech and physical therapy can help with these symptoms, but if they get worse, encouraging them to use alternatives such as a walker or wheelchair and other forms of communication will help them to get around and communicate.
- Provide Emotional Support
A listening ear can be as powerful as medical treatment. Let your loved one share their feelings, frustrations, or fears without judgment that can strengthen their sense of comfort and dignity.
Let them talk about their emotions and let them know you’re listening. Living with a degenerative and unpredictable disease can induce anxiety and depression, which are both common side effects of Parkinson’s. This can be diminished by having the support of the people around them. - Monitor New or Worsening Symptoms
Stay observant of any shifts in mood, balance, or physical ability. Be aware of any changes or worsening of symptoms such as difficulties with walking, speech, balance, fatigue, or coordination. These symptoms will likely progress over time.
Help them get the support they need from a doctor or therapist. Early detection allows doctors to adjust treatment plans and improve support for Parkinson’s at home.
Words of Encouragement for Someone with Parkinson’s
Emotional support is just as important as physical help when caring for someone with Parkinson’s. But sometimes, it’s hard to know the right words of encouragement for someone with Parkinson’s.
While some people might be able to cope with these situations, others may want to scream, cry, or avoid the situation.
Both reactions are perfectly normal and understandable. It’s important to remember that as much as you may want to support them, you too are dealing with all the questions and emotions that come with this kind of diagnosis.
But on’t be too hard on yourself!
With this in mind, empathy and genuine care go a long way when coping with Parkinson’s diagnosis and supporting your loved one. And people with extensive experience regarding what to say and what not to say to their loved ones living with a chronic illness frequently recommend some of the following:
Don’t ask: How are you feeling?
Instead, say: It’s great to see you. I’m so excited to tell you about (something you have a common interest in).
While “how are you feeling?” is a reasonable question to ask most people, especially if they are recovering from an accident or a stomach bug, asking this question when it comes to chronic illness keeps it front and centre.
They likely have to answer that question multiple times a day. Help them focus on something different other than the obvious and make sure they know you’re happy to be there.
Don’t say: You don’t look sick.
Instead, say: You look nice!
Focus on the positive. Some days, they may not display any signs of their illness, but there are invisible signs and symptoms that we can’t see.
Don’t reduce the illness to its outward manifestations, but instead let them know you appreciate the depth of what they’re dealing with.
Don’t say: I know how you feel.
Instead, say: I’d love to know more about Parkinson’s if you’re up for sharing.
If you don’t have Parkinson’s, you don’t know how they feel. It’s natural to want to connect with them or to imagine how someone feels by using other experiences to try to relate.
But, in reality, this can diminish the other person’s feelings. If you want them to feel comfortable talking with you, be humble and let them share their experience with you.
Don’t say: Everything will work out.
Instead, say: I want to help in any way I can.
False hope and positivity when faced with a chronic illness is not necessarily helpful, it’s better to face it, acknowledge it, and let them know they can count on you throughout their journey.
Don’t say: Let me know if I can do anything.
Instead, say: Would it be helpful if I came on the weekend to help with some housework?
Outline when and what you can do. Not only is an open ended offer harder to accept, it puts more work on your loved one to decide how they need help. Allowing a yes or no response to your offer is helpful and will be more easily accepted.
A bit of empathy and genuine care can go a long way in offering Parkinson’s help and emotional support.
The Parkinson’s Care!
Caring for someone with Parkinson’s disease can be challenging, but you don’t have to do it alone. At Maple Community Services, we specialise in providing expert Parkinson’s support and personalised Parkinson’s care plans.
Whether you’re a family member, friend, or professional Parkinson’s carer, we’re here to help make the journey easier as your trusted NDIS provider in Australia!