1. Meet Jessica
Jessica has known her friend Aileen for over 30 years. They were neighbors at one point in time. Jessica has a family of her own – a husband and 3 teenage children, and now live an hour outside of Toronto. Aileen has 2 children, one (David) who lives nearby but travels regularly for work and the other (James) in England. Alieen lives alone in a 2-storey home in Toronto. Her health has been declining and recently had a severe stroke.
Jessica checks in with Aileen regularly and helps with shopping and cooking prior to her stroke. Since the stroke, Aileen has been coming to the hospital with the GoTrain at least 3 times a week to help care for her friend. David has been to the hospital a few times in between his work travels, and James has not been able to fly back from England due to work commitments. David and James have been the primary contacts for the clinical team via telephone/ .
Jessica is not sure how long she can keep caring for Aileen because she feels she is now neglecting her own family. She is also not getting a lot of information as Aileen’s children are the clinical team’s primary contacts. Jessica feels she has a lot of information to share with the team particularly around a safe discharge as she knows her friend well.
Before Arrival:
Jessica was worried and anxious. She was helping David make a decision about rehab, but they didn’t get a lot of information from acute care and hoped they were making the right decision for Aileen. Her mind was not at ease.
Arrival to Rehab:
Jessica accompanied Aileen and David on the first day to Bridgepoint. Generally, happy and relieved but she felt that the team was not including her in conversations and was kept at a distance. All of the questions were directed at David.
Care in Rehab:
Jessica felt frustrated and discouraged. She was not receiving any information, and when the team did speak with her, the updates were vague. At the same time, David had been getting updates but not communicating regularly with her.
Jessica was at the hospital at least 3 times a week and was starting to feel stressed and burnt out between caring for her family and for Aileen. No one ever asked how she was coping.
Transitioning:
Jessica felt very worried and didn’t know what will happen to her friend. She felt betrayed because Aileen was her friend. The team kept indicating that she was not family and that she was just a friend. David finally reached out to Jessica after the family meeting to let her know that Aileen will not be able to go home. He asked if Jessica was able to tour some LTC homes. Jessica was angry that she was not included in the family meeting, but relieved that David was finally including her. However, because Jessica was not included in the family meeting, she didn’t know what she needed to do and didn’t feel she had the necessary information to choose and tour the homes.
Continuing the Journey:
Jessica was relieved when she finally spoke with the social worker and was able to get some information about long term care application. Because David was travelling for work, he asked her to tour the homes and give the choices to the hospital. Touring the homes took a long time. She felt pressured to make the right choice for her friend. There were many uncomfortable conversations with the social worker and patient care manager about LTC. She also felt blindsided when they were going to move Aileen to the 7th floor. She had no information and felt like they were kicking Aileen out.