Contributed by Arlene D’Alli, MSW, LCSW and Kathy Mason
It’s been said that PD is a “snowflake disease” as no two patients present the same. However, there are many similarities in the caregiver’s journey of how to most successfully deal with it. Caregivers of PD patients are resilient. They prove time and time again they can meet any situation from a position of strength and empowerment if they can better understand it. Unfortunately, caregivers often find themselves overwhelmed with the sheer volume of information available on how to best manage the complexities and ever changing challenges they encounter.
Here are some important resources for the busy caregiver:
In this time of COVID, caregivers can be especially vulnerable to difficult feelings and situations while usual activities are suspended. Arlene D’Alli, MSW, LCSW and the Fixel Institute CARES volunteer counselor, is available to help. Please make a CARES appointment for this FREE service by calling our office at 352-733-2410 or email below.
This online presentation features Arlene D’Alli, our CARES counselor, at a recent annual UF Health PD Symposium where she reviews common caregiver emotional concerns and strategies on how to best cope. It is especially helpful information for caregivers during this unsettling period.
This timely article details how marriage is affected by caring for an increasingly dependent partner and the changes to a relationship experienced by the “well spouse.” It acknowledges the challenges caregivers face to fight the disease (and not each other) in the marriage.
This is a comprehensive online guide that gives an overview of the stages of PD and a template for caregivers to follow to better manage the responsibilities they acquire as the disease progresses.
Need immediate support? Staffed by nurses, social workers and therapists, the free Helpline is available to answer caregiver questions and concerns. Just call 1-800-473-4636.
CAREGIVER Questions & Answers – COVID Edition
Answered by Heather Simpson, OTD, OTR/L
As a care partner of a loved one with Parkinson’s Disease (PD), your roles and duties can be vast. During this time of the Coronavirus (COVID) pandemic, the uncertainty of the impact can make caregiving particularly challenging. Although much information is available, it can likely feel overwhelming. Therefore, we have taken several questions from local care partners to summarize the answers available.
Question 1: In this time of COVID-19, what behaviors and symptoms in a PD patient might indicate infection other than cough and/or fever?
Answer 1: Although we know quite a bit about the COVID, there are still many questions on how the virus can impact those with Parkinson’s Disease. We know that seniors are most at risk for developing COVID and that those living with PD can be more severely affected by symptoms of COVID due to the predisposition of the motor symptoms of the disease. As a caregiver, it is important to watch for unusual symptoms that your loved one with PD might demonstrate. As cough and fatigue can be symptoms of PD, it can also be indicative of something like COVID. Determining the difference between typical PD symptom progression and COVID can be challenging, but knowing what is unusual for your loved one’s PD symptoms is the best way to stay alert. Besides the typical signs of an unusual cough or fever, unusual symptoms of increased breathing difficulty or sudden extreme fatigue and motor changes would warrant further assessment from your physician. If you are unsure, you can always contact the Parkinson’s Foundation FREE Helpline at 1-800-4PD-INFO (473-4636) or email@example.com.
Question 2: What major changes, good and bad, has the pandemic caused to medical care, treatment plans and services for our PD community?
Answer 2: COVID has certainly changed the way that healthcare and services have been offered for those living with PD. As research and experts agree, isolation and decrease physical activity can lead to a worsening of PD symptoms (motor and non-motor). However, due to the unexpected onset of the pandemic, fast changes to healthcare and services have been made to minimize the impact on health outcomes of us all. Most prevalent is the movement toward accessibility of online services for healthcare and social events. Likely, your physician has moved care to telemedicine. This shift in services to virtual medicine in your own home has allowed continued services across healthcare providers to those social distancing. Most insurances have shifted to funding these services for the temporary period to accommodate those changes with COVID. This means that continued care is likely to occur. Many rehabilitation providers (occupational, speech, and physical therapy) have shifted to telehealth care, as well. Not all rehabilitation providers can provide this treatment, minimizing the alterations in the treatment care plans. Likely, if a second wave or future pandemics were to arise, healthcare will be better prepared for the management of care due to lessons learned from this crisis. Read more about the benefits of telehealth services here.
In regards to services for PD, there has certainly been an alteration in types of programs that are available for those living with PD. Many support groups, exercise classes, and symposiums have had to move to online programming or cancel due to social distancing restrictions. Although the country is shifting back to returning to normalcy, caution is continued to be given when returning to post-COVID activities.
Question 3: During this prolonged time of social distancing and limited access to activities, what do you see as the caregiver’s role in promoting the PD patient’s optimal emotional and physical health?
Answer 3: The caregiver’s role is extensive and ever-expanding. However, one of the most important, yet forgotten about, the job of the caregiver is to engage in self-care. Like the oxygen mask scenarios when flying, similar thought can go to this. To ensure that your loved one is best supported with living with PD, you must ensure your own health by participating in self-care (rest, relaxation, support, and more). The feeling of “cabin fever” can be hard for everyone, but particularly for caregivers who rely on the support that they receive from outside services such as social groups or rehabilitation. As a caregiver, it is important to continue to wash your hands, wear a fitted mask and protect yourself and your loved one from infection.
In supporting your loved one with PD during COVID, apathy, and mood changes can make managing PD symptoms difficult. Encouraging continued exercise, plenty of water, and staying hydrated, maintaining a sleep schedule, social distancing as much as possible, and encouraging healthy social routines is important. If mood changes, demoralization, or apathy impact you as the caregiver, or your loved one, follow-up with your physician regarding mental health therapy services that are virtually available to support you during this time.
Question 4: Why is the caregiver’s effort to promote daily exercise so crucial for PD patients, especially during the time of COVID?
Answer 4: As experts agree, the best treatment for COVID is prevention. Maintaining social distancing and staying healthy is one of the most effective ways to stay safe. When discussing PD, this includes staying active with exercise. As exercise has been shown as one of the most important things you can do to manage the symptoms of PD, in regards to COVID, it is particularly important for maintaining health. Particularly, cardiovascular training is of immense importance for your heart and lungs. However, we recognize that access to exercise is limited due to social distancing guidelines, and the increased risk of passing the virus can occur during times of increased respiratory exchange with the environment (like exercise). It is important to stay disciplined and maintain a regular exercise schedule, even from your own home. If you are not connected with a rehabilitation team, this might be a good time to get connected. Whether virtually or in-person, working with a rehabilitation therapists one on one can provide structure and guidance of exercise. Also, explore virtual exercise options. The Parkinson’s Foundation offers Fitness Fridays with many virtual options. Also, check-in with your healthcare team for local support and exercise classes that are available during this time. As a caregiver, joining your loved one in exercise can be helpful. Not only to maintain your own self-care but to motivate your loved one.
Question 5: How can PD patients and their caregiver best advocate for the continuance of telemedicine and other crucial at home services once the pandemic has officially passed?
Answer 5: As healthcare providers, we can use your help to advocate for healthcare change. We have been fortunate to have the luxury of telehealth medicine and rehabilitation during this pandemic, but unfortunately are preparing for this to only be temporary. If you feel like telehealth has been helpful for your care, we ask that you help us advocate and fight with your insurances and policymakers to allow this continuance of care once the pandemic has officially passed.