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Parkinson's Disease Awareness Month: A Guide for Caregivers

Parkinson's disease is a neurodegenerative disorder that affects nearly 90,000 Americans every year. The condition is incurable, but proper treatment can slow progression and allow a normal life for as long as possible.

It's the second most common neurodegenerative disorder after Alzheimer's and has symptoms that impact mobility, mental health, sleep, and more.

Unveiling the Challenges of Parkinson's Disease

As mentioned, Parkinson's disease is currently incurable. The cause of the disease is poorly understood, and it does not run in families in most cases. It is believed to be a combination of genetic susceptibility and environmental factors. The latter is the likely explanation for an increased prevalence of Parkinson's over the last few decades. It is believed that exposure to pesticides and heavy metals increases risk.

The condition causes the loss of neurons and nerve endings, resulting in a deficiency in dopamine and norepinephrine. The primary symptoms are:

  • Tremor in hands, arms, legs, jaw, and/or head
  • Stiff muscles, with muscles becoming stuck in a contracted position
  • Slowness of movement
  • Impaired balance and coordination

However, Parkinson's Disease can also have other symptoms, which might include difficulty swallowing, chewing, or speaking, urinary problems, constipation, skin problems, and depression or anxiety. Many patients also have issues sleeping.

Some people with Parkinson's develop dementia. Mild cognitive impairment is common, affecting about half of patients. However, a smaller number will develop Parkinson's Disease Dementia (PDD), which is a form of Lewy body dementia caused by changes in the structure and chemistry of the brain.

The motor problems associated with Parkinson's are progressive. Motor symptoms can reach the point where patients may need a cane, a walker, or even a wheelchair. This is in part because of the risk of falls. They may also need assistive devices to help them exercise. Exercise is helpful for Parkinson's symptoms, but many patients are afraid to exercise because of the fear of falling.

Assisting Seniors With Parkinson's Disease

With time, many need assistance with activities of daily living, especially if they live alone or have a spouse with a disability. Parkinson's is primarily a disease of the elderly and may also be comorbid with other conditions that impact mobility and activities, such as arthritis.

Because of this, it's common for Parkinson's patients to eventually need help, and family caregivers may not be able to provide enough of it. There's no shame in admitting that you don't have the bandwidth to provide your loved one with all of the care they need.

Navigating Care Options: The Role of CDPAP Home Care Agency

Seniors with Parkinson's Disease are best off staying in their own homes as long as possible. However, this can put a lot of strain on caregivers, and it may become tempting to look for a care facility.

Typically, a care facility is needed only in the later stages of the disease. However, some patients find themselves moved to one because of busy family caregivers or unsuitable homes. This is often negative for the patient, and, of course, it can be hard to supervise your loved one's ongoing care, especially if the facility is a distance away.

In other cases, you can handle their care most of the time, especially if you trade off between family members. However, you may need a break to avoid burnout. Or you may be able to handle some parts and not others. Perhaps you can take care of them on weekends, but not during the week when you have to work. Having to work is one of the biggest obstacles for people who would like to care for their loved one themselves, but are unable to do so and have to hand them over to strangers.

In this case, home care is the perfect option. A home health aide can take care of many of the needs of a senior with Parkinson's Disease. They can come every day, or only on days when you can't be there. However, Medicare doesn't pay for home health services and Medicaid is more inclined to pay for a care facility.

How Elite Choice Can Help

Through Elite Choice, you can benefit from New York's Consumer Directed Personal Assistant Program. This program is useful for families in which the person needing care would prefer not to have a stranger come in. The program pays family members or friends, who don't have to be licensed or certified, to care for their relatives or loved ones.

The caregiver can be any adult and is typically a family member, friend, or parent. It cannot, however, be your spouse or your designated representative if you have one. The program is available to people with Medicaid who need help with daily activities and can choose a caregiver and direct their care. You can still hire a home health aide for brief periods so that the caregiver can take a break.

Empowering Caregivers and Patients Through CDPAP

Ultimately, CDPAP is about empowerment and trust. It's not easy to trust a stranger with your care or that of a loved one. But many families are financially unable to have somebody quit their job to take care of somebody with Parkinson's Disease. As the person's condition declines, they can lose the ability to do most activities of daily living.

People with advanced Parkinson's disease often have difficulty with simple activities such as:

  • Safely sitting and standing
  • Eating
  • Dressing
  • Bathing and using the toilet
  • Shaving
  • Traveling to a medical appointment
  • Taking medication
  • Skincare

In addition, some people with Parkinson's develop sleep disorders, which can include sleepwalking. In this case, the person likely needs somebody to move in with them who can care for them.

CDPAP can support your caregiving journey by financially supporting family caregivers, and in some cases will pay for somebody to move in with the patient. Elite Choice can help you navigate proper care options, hire and onboard your caregiver, and provide the tools needed to pay your caregiver. Take the next step towards getting the support you need during your caregiving journey and contact Elite Choice today.

Written by: Leah Ganz
Director of Patient Services

Leah Ganz, RN, BSN is the Director of Patient Services at Elite Home Health Care. She has an extensive background in homecare and previously worked in various specialties including pediatrics, pain management and internal medicine. She oversees all patient services across Elite's departments.