Family Caregiver Investigation

  I was talking to a friend who is in the middle of her family caregiving work. We were talking about how little is known about the work of running a long-term care facility from our homes so that our family members can live with their families. My friend is operating a long-term care bed in her home for her partner. He suffered a stroke in 2017 that resulted in acquired brain injury. He cannot fend for himself. She tried leaving him in a care facility after his rehabilitation program ended because it was clear he was going to need support. It was heartbreaking for her to hear him on the phone asking, "Why can't I come home?", "When am I coming home?". She brought him home and has been taking care of him ever since. Her caregiving story is different from mine. Her partner is not physically frail. He is impaired cognitively, but still able to manage some part of his activities of daily living. The better care my friend takes of him, the longer he is going to live...

  Yesterday I attended a meeting of our local community group, 'Age Against the Machine'. The purpose of this group is to build family, friend, neighbourhood and community resilience to support each other when we can no longer fend for ourselves. I shared what I have learned these past three years of operating a palliative care, then a long term-care, and then a hospice care bed in my home so that our Mom could spend her final years and days at home with her family. The absence of cost accountability for family caregiving in legislative, policy and institutional strategy is alarming. It places an unaccounted burden of care on families who strive to make up the functional difference between what their family member can do for themselves and what they can no longer manage. The work of family caregiving has remained invisible to research priorities, and health provider initiatives that implement patient care programs such as, "Hospital to Home", "Early Discharge...

  2024 10 12 - Caregiver Research - After Death Massage therapy to recover from three years of caregiving, death event and bereavement 23 paid by MSP 135 one treatment Net cost to me - 112 per treatment The $23 is supposed to be applied to the cost, and the patient pays up the difference but it seems like a ridiculous amount to administer given the impact on the cost of receiving the treatment - who is going to make a financial decision for treatment if it only offsets less than 20% of the cost per treatment?  

Mom passed away at 4:03 pm on October 4, 2024. She was 93 years old, less than one month to her 94th birthday, which would have been on November 1. On Thursday, the day before, the Palliative Nurse came to see how we were doing. My sister had been here for a couple of nights to give me respite from overseeing the 24/7 emergency long term caregiving schedule that had been implemented on Tuesday, September 24. My sister was also here on that Tuesday, when we realized we could no longer care for Mom on our own at home. Mom was too weak to hold her weight to stand up to use the commode, and I was not strong enough to hold her weight for her.  Mom had come down with a suspected stomach flu on September 4, but it is hard to tell exactly when the flu started. We had been dealing with bowel emergencies before that. We implemented the dietary protocol to deal with diahrrea and intestinal inflammation, because Mom wasn't absorbing any nutrition from any of the food she was eating.  Mom'...

  This morning Adele and I have moved our base of operations upstairs. Mom is downstairs in the basement suite, where I lived with her until yesterday. Yesterday we took the step of putting Mom into Emergency Long-Term Care.  The tipping point for us, after three years of family caregiving, was that Mom could no longer hold her weight to get to the commode, and I could not hold her weight to make up the difference. I purchased a bedpan from the Amazon, but had never used one and had no idea how to use it with Mom. The stress of toileting was overwhelming. Emergency Long-Term Care has a three month waitlist. In the interim, while we wait for a bed to become available within our healthcare authority, Mom is provided with 24/7 professional caregiving in-home. This means I do not have to worry about her toileting anymore. It also means Mom has caregivers in her suite at all times, and I don't have to be there in the same way. There are many questions to answer, to shift operations...

  Yesterday the Palliative Care Nurse came to visit. Mom's benchmark indicators for her overall health had recently shown non-reversible signs of decline: acute pain in her knee and general overall weakness meant she needed more help with getting dressed, standing and walking; she would spend an entire 24 hour cycle in bed gathering her strength; she was sleeping more; her appetite had diminished significantly.  The Palliative Care Nurse came to visit to discuss her assessment of Mom's current state of health, and how we can prepare for what is coming next. Mom is adamant that she wants to let 'nature take its course' and pass away at home. Within the first month of Mom moving back home, after aging out of mental health group housing (40 year residency), she was put on the Palliative Care Registry. This was in November, 2021. I had taken on the role of Primary Caregiver, we had made space for Mom to live with us in our home. She was in the middle of a COPD exacerbation ...