"Continuing Care transfer"

My sister was diagnosed with dementia in 2021. She was moved to a private facility with supportive living in Calgary in early 2022. A case manager from AHS was assigned to her. Two years later,  we noticed a continuing rapid decline in her cognition, and requested she be re-assessed for a higher level of care, in a secure facility. (During this time she was very reluctant to accept any help.) This request was denied as relevant staff felt it would be too stressful for her. Later that month, she was admitted to South Campus after repeated falls outside. No injuries were sustained, but she was held for observation, and detox, as alcohol contributed to her falls.

Alcohol has not been an issue since then.

South Campus determined she was a candidate for a higher level of care, and that we should prepare a list of SL4D (supportive living) facilities for her transfer. They indicated LTC (long term care) was likely not suitable for her, as no other underlying health issues were present.

We were then advised she would be sent to a LTC facility, with 2 days notice- this was done towards the end of that month.

The facility is one of the oldest in the city. Most residents are non-ambulatory, many are seen in hallways sleeping in wheelchairs. My sister shared a room with a non-verbal, non-ambulatory lady. No privacy except a half-length curtain between the two. We (I) felt this was not appropriate for my sister, but were told at the annual Care Conference, a few months later,   that she was "thriving". We in no way, found this to be the case. I expressed my desire to have her transferred to an SL4D facility. She continued to be very agitated whenever the patient sharing her room was provided help/moved etc., as she was not able to understand why she was in "her" room. She sometimes thought that she had to take care of her.

I am of the firm belief that her environment at the LTC was causing the disruptive behaviours, and in discussing my intent to move her, with the appropriate staff on her unit, I was told to not get my hopes up

I contacted AHS Transition Services at South Campus to make them aware of my concerns, and why she should not be in an end-of-life facility. They concurred with my reasoning, and suggested I contact  AHS Community Transition Services to request a re-assessment. I did so within a month, where they agreed, and placed her on an "Immediate" transfer list, after meeting with my sister at the LTC facility. The environment clearly appeared to be distressing my sister, and AHS agreed a move was warranted.

Shortly thereafter we were advised she had been  found a placement at another facility, only to be told a day later, that a bed was refused. My efforts to connect with the facility, for an explanation, were in vain.

Community Transition Services  then advised me that my sister has been denied a bed at many facilities, and that the more denials received, the more unlikely she would ever be moved. It now became evident that the LTC facility, felt it was in their opinion, better for my sister to remain there, and indicated behaviour problems would make her unsuitable for SL4D.  These comments were relayed to all facilities that initially accepted her, hence the denials.

I felt I was at an impasse, so I initiated a concern with the Alberta Health Advocate, in July, and discussed the matter in detail with them the next day.

Later that same day, I received a call from Millrise Seniors Village, welcoming my sister to her new home! It seems that Millrise had spoken to the Nurse (Margaret) on her unit at the LTC, who was of the opinion my sister would thrive in Millrise, in her own room. 

My sister is now in a secure facility, where we are hopeful she will  settle, and feel safe ,as this terrible disease progresses.

Without the intervention of AHS Community Transition Service, specifically Janine, my sister would still be in the worst place possible for her.

The stress for my sister, and her family, caused by , I believe, someone who seemed to believe they knew best, despite AHS's recommendation, has been a terrible ordeal, and it is frightening to think there are others who are powerless to help themselves, without an advocate.

In closing though, I cannot express enough how the kindness, empathy and caring of people like Janine at AHS Community Transition Services,  the Nurse at the LTC (Margaret), and the attending aides, have helped us in this very traumatic and exhaustive journey.