Coping With a Loved One's Crisis While Living With Parkinson's Disease
Working in an acute care hospital as a medical social worker, it was part of my job to help deliver bad news to patients and their families and help them cope with crisis alongside the medical team. On a bright Autumn day while the leaves were glistening but still tethered to tree limbs, I was called to a patient’s room for such a circumstance.
The family was known to me from prior admissions and as we greeted they recalled the remembrance of past conversations. They were there to tend to their father who had been admitted after a fall. At rounds earlier in the morning, I had learned that there was an incidental finding on the lungs suspicious for cancer. The testing would take place that day and results would be pending, meaning they would take about a week to come back. Our goal during the meeting was to share with the family the findings and plan for care.
Multiple health issues
This would be enough to occur within the family if there was not already an additional health crisis. The patient’s wife had been diagnosed with Parkinson’s disease two years ago and was already displaying symptoms. She was quite well functioning in general with stable mobility, no need for assistive devices, and living independently at home with the support of children. She displayed minor gait shuffling, tremor and a masked face.
During our conversation, due to her masked face symptom, I regularly asked her how she was processing the unexpected news. I was in awe of how gracefully she replied and shared her emotional experience and understanding. Her daughters were present and shared with me afterwards their concern for the potential new cancer diagnosis in additional to the fall and how it may impact their mother. During our conversation I made sure to highlight a few points that I’ll share with you now. Unfortunately, it’s not uncommon for multiple health issues in families to occur and it can be helpful to learn strategies to cope.
Make use of already existing supports
If one is already in a support group, keep going. While some groups may have limits on the topics shared, others can be more open-ended and be a place to include additional family issues occurring. For this patient’s wife, whom I’ll call Barb*, she attended a group monthly at our hospital specifically for people living with Parkinson's disease and her husband attended a support group for caregivers that occurred at the same time.
Gather more support
Dealing with an additional health crisis may bring upon feelings of shame or the desire to isolate. This is a time to do the opposite of that urge and share with trusted others that you may need more physical or emotional support. For Barb, her husband helped around the house more since her PD dx and for her she knew it would be important to ask friends to help tidy or even hire a housekeeper to come in occasionally.
Rely on your medical team
Ask questions. Ask questions. Ask questions. Medical encounters are sometimes brief these days given the culture of medicine, however, this does not mean that you need to feel rushed out of asking important questions. For Barb and her family, knowing when the results of the test would be back was an important question. Also equally important was learning what would be the impact of the fall on her husband’s mobility. Would he need rehab conducted at home or at a facility? If you tend to be someone who shies away from questions, consider asking a family member or close friend to help you advocate. If you’re in a hospital system that includes social workers as part of the team, use them. I loved advocating for patients and helping their voice be heard. That was a part of my training I absolutely used on a regular basis.
Be kind to yourself
There can be a temptation in dealing with family crisis to neglect one’s own needs. This is natural, however, it can be dangerous while living with PD. Now is the time to set reminders to take necessary pills or make medical appointments. Additionally, consider adding in an act of self-care such as reading a good book, watching a favorite TV show, or spending time outside. However small the act, it shows that you are remembering yourself, caring for yourself, and therefore will be better equipped to handle the crisis situation. It can be tough, to say the very least, to deal with a crisis when there is already a Parkinson’s diagnosis. It would be preferred if we all got our quota of crisis and then no more but, unfortunately life regularly throws curve balls. How have you handled family crisis on top of living with Parkinson’s or caring for a loved one? I’d love to hear your experiences in the comments below.
*Names and details changed to protect privacy.
Do you participate in a support group for PD?