If a parent or loved one is diagnosed with Parkinson’s, it is important to know the right steps to take when providing supportive care. Caregivers can begin by educating themselves and developing a thorough understanding of the disease and its progression.
Confidence in a caregiver’s ability to respond to this challenge can grow with the right information and resources. In this article, we’ll briefly discuss the diagnosis and disease and offer eight helpful steps to best manage a loved one’s changing care needs.
My loved one was diagnosed with Parkinson’s…
The Parkinson’s Foundation defines Parkinson’s as “a neurodegenerative disorder that affects predominately the dopamine-producing neurons in a specific area of the brain.”
Symptoms that accompany this disease develop slowly over the years, however, their progression may be different from one person to another.
Symptoms of Parkinson’s
People with Parkinson’s may experience forms of tremor, along with slowness of movement, limb stiffness, gait and balance problems, and other symptoms related to movement or motor control. Non-motor symptoms can include depression, anxiety, apathy, sleep disorders, loss of sense of smell, and a variety of cognitive impairments.
Stages of Parkinson’s
Parkinson’s symptoms and stages can vary by age of onset and from person to person. The Parkinson’s Foundation outlines the stages of this disease below:
- Stage 1 and 2 – Early-stage Parkinson’s
Initial stage, with mild symptoms that do not interfere with daily activities. Tremor and other movement symptoms occur on one side of the body only. Changes in posture, walking, and facial expressions occur.
- Stage 2 and 3 – Mid-stage Parkinson’s
Symptoms start or continue to get worse. Tremor, rigidity, and other movement symptoms affect both sides of the body. Walking problems and poor posture may be apparent. Loss of balance and falls become more common. The person can live alone, but daily tasks are more difficult and lengthier.
- Stage 4 and 5 – Advanced-stage Parkinson’s
Symptoms become fully developed and disabling. The person may be able to walk and stand without assistance but needs a cane/walker for safety and significant assistance with daily activities. Gradually it may become impossible to stand or walk and around-the-clock care is needed. The person is unable to live alone.
Parkinson’s & Dementia
Individuals with Parkinson’s may experience changes in the structure and chemistry of their brains which result in cognitive changes. This disruption in normal brain functioning can lead to different types of dementia, such as Parkinson’s disease dementia or Dementia with Lewy Bodies. The complications of dementia with Parkinson’s symptoms can add significant stress to caregivers and their families.
Caring for a Loved One with Parkinson’s: 8 Helpful Steps
Families can experience an overwhelming sense of uncertainty when dealing with a Parkinson’s diagnosis. These eight helpful steps can offer guidance for prioritizing care and supporting your loved one.
Create a care plan for yourself.
Creating a self-care plan for yourself can ensure you have the support you need throughout this process. Consider working with a therapist, mental health counselor, or spiritual advisor to have someone to talk to as you manage the demands of caregiving. Do your best to set aside time for wellness practices like exercise, rest, massage therapy, meditation, gratitude reflection, and fun. Joining a support group can also be beneficial.
Become an observer.
Become an observer of your loved one, especially during the first years of dealing with the diagnosis. Get familiar with the types of changes that can occur and how to manage them. Write down significant changes you observe and offer feedback to your loved one’s physician. Your loved one may not be able to notice every unusual response or may experience denial as changes occur, so this support will be invaluable.
Gather information and resources.
Many trusted sites offer research-based support, education, and guidance for caregivers. The Parkinson’s Foundation, the American Parkinson’s Disease Foundation, The Michael J. Fox Foundation for Parkinson’s Research, and the Davis Phinney Foundation have a wealth of information for those facing Parkinson’s disease. Through this, you will feel more prepared to quickly recognize motor and non-motor symptoms in your loved one as they occur.
Plan to be present for medical appointments.
One of the best ways you can assist a loved one with Parkinson’s is by being present with them for medical appointments. You will offer them moral support and peace of mind as you work together to understand the extent of the condition and the right ways to manage it. Take note of the doctor’s advice to help your loved one absorb the information provided and use the opportunity to ask questions directly to the physician.
Be aware of medication needs.
Learn how to manage your loved one’s medication and assist them in taking it correctly. Always maintain an updated list of medications and work with your preferred pharmacy to streamline refills or new prescriptions. As your loved one experiences various stages of the disease, monitor changes or visible side effects.
Ask for help.
Asking for help from a friend, family member, or professional can provide a sense of relief as you manage competing demands. Helplines like 1-800-4PD-INFO and [email protected] are staffed by nurses, social workers, and health educators to support you with referrals, health/ social care, medical issues, and current information.
Listen and learn.
During this challenging time, your loved one will need you the most. As the disease progresses, listen to what he or she wants to say. Ask them about their preferences and practice respect and empathy. Your loved one may prefer some independence in doing certain activities but need additional assistance for other activities.
Explore assisted living or memory care options.
Assisted living provides a home-like setting for individuals with different medical and personal care needs, while memory care offers specialized care for cognitive needs. Living spaces can be individual rooms, shared suites, or apartments. You can consider this option especially if your loved one wants to have more independence while being properly cared for or when your loved one is experiencing Parkinson’s and dementia.
Help for your caregiving journey.
Offer yourself understanding and patience as you practice these eight steps. Remember, you are your loved one’s most important advocate and resource.
To learn more about how Edgemere’s healthcare services and a full continuum of care can support your loved one with Parkinson’s, contact us today.
