Processed 2022 Time records - 2025 04 25

 

How it started. 

When we brought Mom home, we did not know the depth and breadth of responsibility we were taking on. 

First, Mom had been living in a supervised mental health group home for forty years. This meant that her meals and medications were provided. She never had to cook, all her food and beverage intake was managed by the group home staff. She never had to manage her own medications, they were delivered to the group home and administered, with a scheduled routine, by the group home staff. During daytime hours Mom was free to come and go, although she had to notify staff if she was going to miss a meal. After 10 pm the exterior doors were locked overnight. The home was staffed 24 hours a day.

We planned to replicate that level of staffing and daily routine in our home. At this point, we were operating a mental health group home bed.

Second, Mom had aged out of the mental health group home system. She had several health issues leading up to this moment. Her increasing frailty had led to two falls in succession. During her last year at the group home, we filled the widening gaps in Mom's ability to meet her personal activity of daily living needs. This included driving to the group home twice a week to help Mom to have her shower. She could no longer manage her own bathing. The staff at the group home also helped to fill Mom's frailty needs - her mobility was increasingly impacted by rheumatoid arthritis in her knees and feet. The staff helped her to walk between her bedroom and the outdoor smoking area. At this time Mom was still smoking approximately a pack a day of cigarettes. She had smoked for over forty years.

We planned to provide additional staffing and supports to meet Mom's needs for managing her activities of daily living, above and beyond impacts from her mental illness. These extra supports included physiotherapy to maintain mobility and prevent falls, accessibility accommodations in the bathroom for no-barrier shower and raised toilet seat. We also provided a walker, and supervision when she was moving from bed to recliner chair, or to the bathroom. We rented a wheelchair so Mom could get outside for a walk, or get out to the car to go for a drive.

Third, we were in the middle of the first wave of Covid epidemic. We had the option of signing Mom into a long term care facility to live out her final years. We were concerned that we would not have access to visit her. We were concerned that she would be vulnerable to poor care standards and unable to identify or report deficiencies. We were concerned where she might be assigned a bed, that could entail long commutes to be able to visit her, when and if that became possible post-Covid.

We consulted with Mom's GP about the possibility of bringing Mom home. Was this something he had experience with? Was it something other families were doing? What could we expect? GP's response was that it was a possibility, it was something other families were doing, and it was hard to predict what to expect because Mom's health trajectory and increasing frailty would not follow a linear progression. We held a family meeting, and with me leading the initiative, we decided to bring her home. Personally, I could not move Mom into another facility with the numerous and multiplying risk factors she was facing. My personal calculation was that we would manage somehow.

Fourth, after Mom got moved in, her GP recommended we get her chest checked for pneumonia. Mom had previously been diagnosed with COPD from her decades of cigarette smoking. The x-ray confirmed Mom had pneumonia which escalated into a severe COPD exacerbation. At the same time, she was diagnosed with dementia, which had different symptoms from existing her mental illness.

During the first three months of Mom moving home I did not keep time records because I was the only one looking after Mom. I would call my sister in tears, exhausted and worried because I didn't know if this was going to be Mom's last day on earth. I was overwhelmed with responsibility that I had never managed before. Mom couldn't even get herself a glass of water. I was responsible for her survival 24 hours a day, 7 days a week.

It was during this time that GP had us sign onto the Palliative Care Registry. We weren't signed on to long term care because Mom wasn't expected to survive six months. We didn't have a case manager. Home support services were provided through the Palliative Care Registry. We were assigned a Palliative Care Nurse. At this time Mom was very clear that she did not want to go into hospital, she wanted to, "let nature takes its course." She wanted to die at home. We signed the Do Not Resuscitate order and put it on the fridge.

The scope of Home Support services were specifically constrained. They could only help with Mom's bathing, dressing, and beverages. They couldn't do any housecleaning or cooking. They could not administer medications. Their visits were very short - less than half an hour. I could actually leave to walk the dog or run an errand.

There was no provision made to support me, as primary caregiver, or my household, operating a palliative care bed. We were expected to meet Mom's needs for health and well being. We were expected to do this work without any additional supports from the healthcare system.