The difference between Palliative Care and Long-Term Care - 2024 08 10

 

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 that turned into pneumonia and she was still smoking. She was also diagnosed with Dementia, in addition to her pre-existing diagnosis of Paranoid Schizophrenia.

When we moved Mom home, we did not know anything about Long-Term Care, Palliative Care, or Hospice Care. We had heard these terms, but we didn't know what them meant in terms of practical, or functional realities.

Because Mom was immediately put on the Palliative Care Registry, we were not put on any Long-Term Care program. We did not have a Case Manager, we were not informed of any Long-Term Care supports or benefits that might be eligible because we were caring for Mom at home. We did not understand our operations for Mom's care as being long-term, we perceived them as being short-term, that she was going to expire within six months and we needed to make the best of the time we had. We put aside our plans and routines and focused on Mom's care.

I stopped looking for new clients for my project management consulting business. After the last major project wrapped up, I shut down my business permanently. 

In the meantime, our concerted family efforts to improve Mom's health and well being were paying off: she quit smoking, she got her hearing back, her days were enriched with visits with her children and extended family, she was living at home for the first time since 1981, she was happy and looked forward to each new day.

Every six months the Palliative Care Registry Nurse would check in, and Mom's registration would be renewed. It felt overwhelming to make a change to Long-Term Care and did not seem worth the effort. Mom was so frail, when she would have a setback, I wouldn't know if she would still be breathing in the morning when I went in to check on her.

After two and a half years, I realized that I needed to change our approach. I was burnt-out, I hadn't been away to visit my newborn grand-daughter, it had been over a year since I had spent a week away on my daughter's farm. I missed my kids and wanted to see them.

I was told about a program at the Family Respite Centre where we could take Mom for care so that I could get the relief I needed from looking after Mom. In order to apply to the Family Respite Centre, we needed to be put into the Long-Term Care Program because we needed a Case Manager. 

In early June the LTC Case Manager visited us to set our application for Family Respite Centre in motion. She also recommended Mom could attend an Adult Day Program and I could get weekly four hour respite visits from Home Support.

At this time, we are in the middle, between Palliative Care and Long-Term Care. We are operating between both programs.

What I did not understand before yesterday's visit, is that Mom can be in Long-Term Care and not need to go to Hospice Care at the end of her life. It is possible that Mom will pass away in her sleep, it is also possible that it could be years yet before Mom's body can no longer support her vital life force.

Mom's decline is not a predictable trajectory of steady loss of function and body system failure. Mom's decline is a sine wave of peaks and valleys of functional ability, interspersed with ongoing body system decline. Her low lows are descending, as are her high highs. One day she will get herself up, dressed, and make her own way to her big chair. Another day she will stay in bed all day, feeling too weak to get up, barely able to get to the commode beside her bed.

Mom would only be eligible for Hospice Care if she had a catastrophic health event - if she had a fall and broke her hip and could no longer get out of bed, if she aspirated food due to her swallowing issue and developed untreatable pneumonia, if she had a stroke or heart attack. She is not in that condition. She is not a candidate for Hospice Care at this time. She is in Long-Term Care in a very gradual process of increasing frailty that requires increased caregiving infrastructure to manage.

My key takeaway from yesterday's visit was that we are preparing for increasing caregiving infrastructure here at home to support Mom's wish to stay out of an institution. Our increasing caregiving infrastructure is commensurate with Mom's increasing frailty. We won't know from day to day what changes we need to make, we will know, as an aggregate of small changes over time, what adaptations are necessary to keep Mom safe and healthy.

The difference between Palliative Care and Long-Term Care depends on the predicted trajectory of Mom's decline. If her suspected cancer was formally diagnosed and she was showing signs that the cancer was reaching the stage of ending her life, she would be a candidate for Palliative Care and eventually apply for Hospice Care. Because Mom's decline is fluctuating and overall on a shallow incline of decline, she is a candidate for Long-Term Care and we can expect her frailty to increase but we have no idea how long she will be with us.

The difference between Palliative Care and Long-Term Care is the length of our timeline of operating our long-term care bed at home. We need to be prepared for increasing infrastructure support for Mom, extending dwindling household resources from reaching the point they can no longer support this operation, and managing my current level of burn-out from serving as Mom's primary caregiver.

At the same time, we can plan for family gatherings, storytelling, and working to improve the institutional infrastructure that should be ensuring our family caregiving operation does not suffer increasing socio-economic vulnerability the longer we provide care to Mom in our home.