Expert Tips for Caring for the Parkinson's Caregiver (PART 2)

Who is Wissam Deeb?

Wissam Deeb completed his MD in Lebanon at the University of Balamand. He completed his residency in neurology at the University of Massachusetts in 2015. He then moved to the University of Florida to pursue a movement disorders fellowship at the Norman Fixel Institute for Neurological Diseases. He remained on faculty until June 2020on a prestigious American Brain Foundation grant and then moved back to UMass as an assistant professor of neurology. Dr. Deeb has a clinical and research interest in deep brain stimulation (DBS), Parkinson disease, and Tourette syndrome, and his work focused on incorporating technological advancements such as wearable devices in clinical and everyday care. He has been published in the New England Journal of Medicine for his work on memory flashbacks and DBS. We caught up with him and his collaborator Irene Malaty MD, and we picked his brain about expert tips for caring for the caregiver.

1. Consider advanced care planning.

Advanced planning encompasses wills, advanced directives, health care proxies, and power-of-attorney documents. Although the regulations may vary between states, these documents provide guidance regarding the estate and medical care management when the person is no longer capable of expressing their opinion. Early in Parkinson’s disease, it might not seem essential to get these documents ready. We hear many patients and caregivers say that “Parkinson’s disease is a slowly progressive disease, so I have time”, “it does not significantly affect life expectancy, so I have time” or similar statements. We usually recommend that all adults prepare these advanced directives as early as possible, regardless of their health status. This recommendation is based on two reasons: 1) change can happen unexpectedly, and 2) having thought about these topics provides the caregiver with some guidance and decreases the burden of decisions. Having these documents prepared early can avoid unfortunate and stressful situations for the caregiver. For instance, a person with PD who did not discuss advanced planning gets admitted to the hospital for severe aspiration pneumonia requiring intubation. The doctors report that he/she most likely will require ventilation assistance indefinitely. The caregiver now has to decide on the course of treatment – “did my partner want to live with ventilation assistance?”. Without a document or at least a previous discussion guiding them, the caregiver will feel significant emotional turmoil and self-doubt. On the other hand, those documents will provide some clarity and ensure that the caregiver is fulfilling their partner's wishes.

Ask your doctor and your healthcare team about advanced care planning, and they can help you find the appropriate documents and guiding resources. Here is a link to an article written by Dr. Subramanian about advanced care planning for patients and caregivers; especially useful during the COVID-19 outbreak.

2. Find a support network.

Parkinson’s disease can be a challenge to the patient, but also to the caregiver. When facing adversity, resilience is what provides the tools to overcome and to thrive. One of the main drivers of resilience is having a social support network. Indeed, social isolation and lack of social supports are associated with lower quality of life, increased depression, and lower chances of fulfillment. The caregiver must get the needed supports. We recommend that you invest in developing a support network of friends and family. We recommend considering larger associations such as caregiver-specific support groups, local clubs and organizations, and religious institutions (if applicable). The camaraderie and support a caregiver can get from being affiliated with a larger group are tremendous. Dr. Subramanian is running a virtual support group during the pandemic linked here with the PMD Alliance.

3. Know your resources.

“It is a Team Sport”. Parkinson’s disease is a complex disorder that affects many physical, emotional, and cognitive aspects of life. As with any complex condition, it is vital to know the local and national resources available and to activate them when needed. Check with your county for any elder or disability services. We recommend that you check with your doctors to connect you to a social worker who can help you navigate and obtain local resources. The social worker can provide psychological counseling, as the emotional and psychological impact of Parkinson’s disease are multiple and can affect the patient and the caregiver. Being a couple with one member having Parkinson’s disease can add significant strain on the relationship. For example, role reversal is common as the disease progresses: the patient used to manage all the house finances, but now due to the cognitive changes, their spouse assumes this role. Moreover, Parkinson disease can affect the personality and cause apathy (decreased motivation), which can also strain a relationship. In those situations, couple or individual counseling with a social worker, licensed mental health counselor, or psychologist is recommended.

4. Take care of your own health too!

As a caregiver, you give your time and effort to help your partner selflessly. It is crucial, though, not to forget oneself. Caregivers can develop both medical and psychological complications from their central role in keeping someone going. It is known that they are at higher risk of cardiovascular complications and mood disorders. The medical term is usually “caregiver burden”. Many caregivers don’t appreciate the expression due to its negative connotations, internal assessment of their role, and the societal pressures of a caregiver role. We counsel caregivers to take care of their own health. A healthy caregiver can better support their loved one(s) when contrasted to a tired and over-stretched one. We recommend that a caregiver takes at least one day a week for their own mental and physical health. Hence, connecting to local resources and having a support network is crucial. During that “personal day”, the caregiver can socialize with friends, catch up on some reading, meditate, etc. However, it is essential not to use this time to do chores, refill medications, contact doctors, or other Parkinson disease-related activities.

ANALOGY: Put on your oxygen mask before helping those around you

5. Find joy!

“Find Joy” is a very useful cliché. As Parkinson disease is complex and often unpredictable, a caregiver needs to develop the skills to find and even create their own joy. It can seem impossible sometimes to find happiness in the face of the challenges encountered with Parkinson’s disease, but some recommendations may help. Consider visualizing the last time you were happy; think about how and what you felt. Remember that happiness is fleeting, and you will not feel it all the time. We recommend that you practice identifying these happy moments, even the small ones, by working on compassion and gratitude skills. These and other approaches are the basis of mindfulness. There are multiple online and in-print resources to self-guide you towards a more mindful and joyful state. We also recommend that you consider a mental health counselor's help, who can guide you through this process. There are multiple ways to find a counselor by asking your doctor, your healthcare team, your friend, or checking the website: psychologytoday.com.

To read more books and articles by Michael S. Okun MD check Twitter @MichaelOkun and these websites with blogs and information on his books and http://parkinsonsecrets.com/ #Livingwith Parkinson’s #EndingPD #Parkinsonsecrets #LessonBedside and https://www.tourettetreatment.com/

He also serves as the Medical Director for the Parkinson’s Foundation.

To see more on Dr. Indu Subramanian she does live interviews of experts in Parkinson’s for the PMD Alliance.