Evidence Alliance - No Progress - 2023 12 09

 

There has been no news from Evidence Alliance about progress on activating the $50k grant that was awarded to research my health topic about the cost of providing a family caregiving bed compared to the cost of providing a caregiving bed in an institution.

Last night we took Mom on a special outing to hear the West Coast Symphony Christmas Festival and Audience Sing-Along.

There has to be a related question with regards to the cost of caregiving and providing institutional healthcare when the work that would normally be done by a qualified, vetted, educated health professional is being carried out by a self-trained family caregiver. 

She wore her early Christmas present, a new corduroy suit. My sister had the suit made by a local tailor. I took Mom's measurements as per instructions, my sister handled the rest of the purchase. 

What does this say about the quality and cost of services and infrastructure that is being provided in healthcare institutions? What does it say about the value of family caregiving in relation to those services and infrastructure?

The suit arrived early this week and it fits perfectly. Mom can easily get in and out of the pants. The jacket has enough room for an extra shirt but looks fitted.

If we are replicating healthcare settings in our family caregiving homes, what does that say about the institutional healthcare settings that family caregiving homes are replacing?

On the day of the concert Mom had her plans in place for getting dressed into her new suit. "I am going to wear my regular clothes until the caregiver comes to give me my shower. After my shower I will put on my new suit for the concert."

If I, a family caregiver, applied for a professional job doing the work that I am doing now to provide for my frail elder mother, what would be the result of that application? What does that say about the application process? Or the quality of education that is being valorized as a necessary credential for working in the healthcare system?

When I came in after the caregiver was done, Mom was in her new suit and had tied a big red ribbon headband on her head. She was so pleased and excited to be going to the concert.

It is disappointing to find so many road blocks and dead ends when family caregivers seek material, substantial relief from the burden of work and responsibility that they are shouldering in each, individual home.

It was a cold evening and we put Mom in her faux fur jacket. She needed something warm on her head so we put her cozy touque on and then tied the red ribbon to decorate the touque. Mom looked adorable.

What is the Evidence Alliance doing with the funds that were allocated to support research into my health topic? What will be the accountability and traceability of those funds to ensure they were used appropriately and value was derived from their expenditure?

This morning Mom was full of happy memories from the orchestra performance and the audience sing-along with the Vancouver Bach Choir members. Her eyes welled up with tears. I asked her if these were tears of joy. She replied, "Yes. I am just so happy to be home with you."

I will wait to hear from Evidence Alliance but I will not hold my breath. Taking care of my frail elder can't wait for moribund, antiquated administrative procedures to keep her alive and enjoying what days she has left of this life.

Mom ended up spending the day in bed, napping whenever she felt like it. I dressed the wound on her ankle from a bump last week. We are keeping careful watch to make sure it doesn't get infected. I put on the Christmas movie, "Elf" on Mom's ipad and hooked her up with her headphones. I could hear her laughing every once in awhile, which meant she was able to follow the story and get the jokes. After dinner in bed she fell into a deep sleep.