Family dynamic

Case Study: Family living with Parkinson’s disease with

Increasing Caregiver Strain

Diana is 64 years old, and is married to JT, 67 years. Diana was a hairstylist for many years, and ran her own small business, in a small shopping complex in Winnipeg.JT was a senior manager for a large insurance company for 45 years but has been retired for the last 4 years. When JT was 62 years of age he was diagnosed with Parkinson’s disease. Upon diagnosis, the neurologist explained that he had likely been living with Parkinson’s disease for many years, but that it had not been diagnosed.  Diana and JT have a strong extended social network of family and friends inside and outside of the city of Winnipeg. You are unsure of their cultural background.

Since JT’s diagnosis, he has experienced an unrelenting progression of his symptoms, which have significantly impacted his quality of life. His muscles are becoming more difficult to move (bradykinesia, rigidity, and postural instability) despite aggressive medication management. His gait has become progressively slower and unsteady, which has made walking difficult. He can now only stand independently for short periods of time and requiresthe assistance of a walker. He recently had a fall down the front steps of the couple’s home.

Diana had to sell her hair salon one year ago, due to the increasing caregiving demands of the illness. JThas experienced increased anxiety, chronic constipation, and urinary retention, which now requiresJT to self-catheterize himself throughout the day. He takes multiple medications that require frequent monitoring, and his medicationshave been adjusted regularly to address progressive symptoms. JT now has difficult getting up in the morning, and requires assistance with ambulating, and some activities of daily living.  JT has recently experienced some cognitive deterioration which has meant that Diana has had to take over the responsibility of managing the couple’s financial affairs, including their retirement investments.

Diana and JT have three children:

1. Josie (35 years, environmental management consultant, Calgary) who is married with two children (Olivia, 3 years and Jessica, 5 years) and is married (Tyson, 36 years, drafting engineer).
2. Mark (38 years) who is recently separated from his wife and has one child (6-year-old son, David), Diana and JT often provide childcare for Mark.
3. Jennifer (30 years) who is single and completing her PhD in architecture in Ontario.

Diana has had concerns about the increasing caregiving required for JT at home and wants to talk with you (as the nurse) about possible supports, as well as what the future might hold. She has asked to come to meeting with you without JT present as she feels guilty talking about her concerns and worries with JT present. Diana’s children have limited awareness of the caregiving burden she is experiencing. Diana protects her children from the painful emotions she is experiencing, as well as from the physical caregiving, as she doesn’t want to burden them. Diana is physically exhausted and has not had time away from JT for the last eight months.