It was a Tuesday morning mid-winter and the snow was already falling. The forecast told for a blizzard and already the hospital discharges for the day were being delayed by family and friends being unable to come and pick up their loved ones. Judy* slept overnight by her husband, John’s side on an uncomfortable but durable cot. During our brief check-in, John and she lamented over the weather and their disrupted plans. John was hoping to head home that day in order to celebrate their grandson’s birthday. Usually it was the Parkinson’s disease that altered their plans, she remarked. Today, yet another factor outside of their control was intruding.
The conversation swiftly moved into Judy and her husband, recently retired, discussing the larger theme of canceled plans and disrupted expectations. Both had worked both in and outside of the home for their adult lives, saving up for what they hoped would have been a carefree retirement. Free of responsibility, they had expected to spend their time traveling and nurturing respective hobbies. John remarked “I thought we had time” and went on to share how he wished he had retired earlier. Judy attempted to comfort him, sharing that they could not have known or predicted his diagnosis or how it would impact their lives. Like many couples coping with Parkinson’s disease, they were coping with the loss of future they had envisioned and learning how to radically accept and make meaning of their current reality.
The emotional adjustment
In the midst of the medical treatment of Parkinson’s, it may be useful to consider how psychological and emotional processing is affecting your overall coping. For some, the emotional adjustment to Parkinson’s can be as difficult as coping with the physical symptoms. It can include coping with one’s body changing along with the need for new personality characteristics, such as increased dependence on others. For caregivers, there can be a different adjustment. Caregiving often occurs in private. Attempting to minimize the impact of providing daily support along with the personal cost of caregiving (i.e. reduced sleep) can lead to the experience of ongoing sadness, grief, and sorrow.2 People with Parkinson’s may also experience chronic sorrow related to disrupted plans, the need to ask for help and depend more on others, as well as limited socialization and challenges related to participating in former hobbies.1
You are not alone
Acknowledging the emotional toll of Parkinson’s is not necessarily easy however, I’ve noticed it can sometimes bring one to a greater sense of overall acceptance (not approval!) for the experience of living with the disease. This awareness or grieving process can occur independently, through the practice of mindfulness or prayer. It can also occur in the shared setting such as with other family members or in a Parkinson’s Disease support group. Some patients and caregivers choose to reach out to a mental health professional for support and processing especially if symptoms of depression or anxiety arise. Regardless how one chooses to cope, it can be useful to remember you are not alone and this is a part of the process of coping with Parkinson’s disease. What areas have you had to grieve since experiencing Parkinson’s either as a patient or a caregiver? How has living with Parkinson’s affected you emotionally? What has helped?
*Names and identifying information changed to protect privacy.