When a loved one gets diagnosed with Parkinson’s disease, you’ll crash into a lot of rushing thoughts. The first thoughts surround your loved one and the diagnosis, followed quickly by the realization that they’ll need help – and you might need to be the one to provide it.
The responsibilities as this disease progresses are countless. They range, and include things like:
- Appointments they’ll need transport to
- Prescriptions they’ll need to gather and remember to take
- Obstacles in their home they may need help navigating or eliminating
- Meals they may need help preparing and eating
- Activities of daily living (like bathing, dressing, etc.) that they may need help completing
- And a lot more.
Since Parkinson’s disease is progressive, it’s also an ongoing commitment – your loved one’s needs will change and adjust over time. Staying up to date with their needs and best treatments/care plans can feel like an uphill battle.
Stages of Parkinson’s Disease
You may have heard of Parkinson’s disease in terms of stages. What exactly are those stages? The stages include:
- Early or diagnosis stage. The first stage of Parkinson’s disease starts at the diagnosis. It continues through early symptoms (like minor tremors), and coming to terms with what it all means for you and your loved ones.
- Maintenance stage. The maintenance stage is when medication fills the role of slowing the progression, allowing life to continue relatively normally.
- Advanced stage. Often called the ‘complex phase,’ this stage is when symptoms go beyond what can be maintained with medication.
- Palliative stage. Finally, the palliative stage is centered around providing relief from the symptoms and helping to manage the stress and pain of the condition.
As you may or may not have noticed, these stages are not the same as other diseases. No amount of time or specific symptomology makes the progression between the stages clear. Instead, they have a much more flexible definition. This disease can show up differently for each individual – there is no specific timeline for it.
Signs and Symptoms of Parkinson’s Disease
There are four main symptoms of Parkinson’s disease which include:
- A tremor in their hands, arms, legs, jaw, or head
- Muscle stiffness, struggling with muscles that remain involuntarily contracted for too long
- Slow movements
- Poor balance and coordination, which can cause falls
Secondary symptoms can include:
- Difficulties with depression and other emotional changes
- Difficulty eating and speaking (including swallowing and chewing)
- Urinary or constipation problems
- Skin problems
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3 Things to Know When Caring for Someone with Parkinson’s Disease
There are a lot of adjustments you’ll need to make when caring for someone with Parkinson’s disease. Here are some of the things you should know:
Keep Open Communication
Your loved one may have Parkinson’s disease, but it doesn’t mean they’re helpless. It can be easy to slip into a routine where you (and any other family members who help) start taking care of their every need.
It’s important to remember that there are still a lot of things your loved one can and should be able to do for themselves.
Otherwise, they may start to feel demoted, useless, or like a burden – creating a catalyst for poorer mental (and ultimately, physical) health. Not to mention that it can also make you feel overwhelmed, exhausted, and stuck. That’s why it’s important to keep open communication about what your loved one can and wants to do and honor their requests. Consider your role as one defined by providing supplemental support for as long as possible.
Keep Learning
Parkinson’s disease is a progressive condition that can manifest in a lot of different ways. Your loved one may experience it differently than others. It also has no common timeline or progression, meaning that the best thing you can do is keep learning.
Because of the complexity of the disease, staying up to date with the latest research can be an uphill battle. As such, it’s important not to try to do it all alone.
There are hundreds, if not thousands, of combined resources out there that range from support groups and professional care organizations to nonprofit Parkinson’s organizations and their very own medical professionals. Together, these resources can help you navigate the complexities over time.
Keep Watch
Pay attention to the shifts and changes you notice with your loved one – everyone’s journey with this disease is different. As a caregiver, you also become your loved one’s advocate.
As their advocate, one of your biggest tasks lies in paying close attention to their signs, symptoms, and changes. Keep a notebook or cell phone note handy to make note of these observations so you can report them to their medical care team. This diligence can make a huge difference in their quality of life and longevity.
Closing Thoughts: Caring for Someone with Parkinson’s Disease
Caring for someone with Parkinson’s disease is a complicated journey – there’s a lot to uncover both about the diagnosis and about how to properly care for them as the disease progresses.
As a family caregiver in California, we invite you to check out our library of free resources designed for you. The California Caregiver Resource Centers are here to provide assistance and guidance. Together, we can navigate the healthcare landscape and help you provide the best possible care for your loved one(s) over time.
Further Reading: How to Compassionately Bring Up Concerns About Someone’s Health
If you enjoyed this article, you may be interested in a prior blog post: How to Compassionately Bring Up Concerns About Someone’s Health. It’s important to have these conversations in a way that is loving and constructive, so in this article, we break down how to compassionately address your concerns with your loved one. Click here dive in.
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