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What Every Caregiver Should Know About Parkinson’s Disease 

By Thomas H.

April is Parkinson’s Awareness Month. Approximately one million people in the US have Parkinson’s, with 50,000 new cases each year. Men are twice as likely to get Parkinson’s. The average age of someone diagnosed with the disease is 56.

Parkinson’s is a brain disorder

It causes unintended or uncontrollable movements, such as shaking, stiffness, and difficulty with balance and coordination. Parkinson’s is usually diagnosed only when symptoms appear.

There’s no known cause, and no cure 

We don’t know what causes Parkinson’s disease, although a family history of the disease increases risk. There is also no cure. However, there are medications that can help patients with the symptoms. Patients can also undergo deep brain stimulation. This is when doctors use electric current treatment to help block tremors and manage movement symptoms of the disease.

Here are 10 tips every caregiver should know to best support someone experiencing Parkinson’s disease:

1. Be organized

Keep all your loved one’s records in a folder you can access. These records might include medical notes, insurance papers, records, appointments, telephone numbers of clinics and doctors, and medication details. Take this folder with you to all appointments so you always have everything on hand.

2. Look after yourself

To be able to look after your loved one, you need to be physically and emotionally well. Take time off — it’s important to unwind and de-stress. Ask family members and friends to help or hire professional care. Spend some time doing something you enjoy and take your mind off things for a few hours.

3. Join a support group

Find out if there are any active support groups in your local area. If not, look online for a support group for caregivers of Parkinson’s disease patients. This will give you both practical and emotional support, and you will be able to ask advice and share your experience with others who are going through the same thing.

4. Educate yourself about Parkinson’s disease

Learn about the condition and symptoms. Talk to your loved one’s doctor about what to expect with the progression of the disease.

5. Expect changes in your relationship 

Mood swings and depression are common in Parkinson’s disease and your loved one may even become resentful. It is difficult to deal with these changes in the relationship, so open and honest communication is critical. You will both need time to adjust to your new roles in the relationship.

6. Observe symptoms 

As your loved one’s caregiver, you will be the first person to notice any changes in behavior or worsening of symptoms. Report these to your loved one’s doctors as they occur so they can be addressed as soon as possible.

7. Report changes

If you spot any changes, let your loved one’s doctors know right away. They need this info to tweak treatment plans or address new issues quickly. Your quick reporting helps keep your loved one’s health on track.

8. Encourage independence

Try to let your loved one maintain routines that are doable. They will want to hold onto their independence for as long as possible. Ask if they need help and respect their answer.

9. Know your rights

Familiarize yourself with both caregivers’ rights and disability rights. Find out if you are entitled to any disability or caretaker benefits.

10. Talk about the future

Although this is a difficult topic to broach, it’s important that you understand what your loved one wants further down the line. You need to discuss wills, treatment options, and end-of-life decisions.

Find resources and get support

Caring for a loved one with Parkinson’s disease is challenging, but you aren’t alone. JEVS Care at Home (JCAH) supports clients with Parkinson’s disease and their families. We provide award-winning home care that helps clients live full and independent lives. Contact us today for more information about our services or how you can become a paid family caregiver.

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