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A Kamloops woman who battled to find long-term care for three aging parents is warning others to prepare years in advance for the care of their declining loved ones.

“People think it’ll be OK to just bring in home care for a couple of hours a day and hope nothing else will happen,” said the woman who works at Royal Inland Hospital. iNFOnews.ca agreed to not to identify her due to the risk of job repercussions.

She fought for adequate long-term care at first for her dad in Kelowna in 2006, and more recently for her mother and mother-in-law in Kamloops, and she learned a few things along the way.

“My dad fell off a ladder and bumped his head,” she said. “He developed a brain bleed that presents as dementia and his health quickly declined, then he got pneumonia.”

She took her dad to Kelowna General Hospital where patients are coded for the level of treatment they need. He got over the pneumonia but his health continued to decline.

“A point comes when the initial problem has been treated, the coding changes, the level of care changes, and then there is nowhere to go. Mom was in her 80s and couldn’t care for him. You’re just holding on, waiting for a bed to open up somewhere.”

The woman put her dad’s name on waiting lists at long-term care facilities in Kelowna while he waited in a hospital bed.

“They were changing his diaper and giving intravenous fluids, and that’s it.”

A few weeks later a discharge team at the hospital met with the family and said if a place wasn’t found for their dad to go within 30 days he would be charged for the hospital bed. The fee was $825 per month at that time in 2006.

“There isn’t discharge assistance in our medical system, you have to be a vocal advocate. We had him on every waiting list for a funded bed in Kelowna and couldn’t afford a private pay bed.”

The family never had to pay the hospital bed fee as their dad died before the 30 days were up.

Several years later the woman’s mother-in-law in Kamloops was suffering with dementia.

“She was showing signs for a long time but her children were in denial except for me and my husband, no one would listen,” she said. “She needed to be mentally assessed, to get her into the system.”

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A year later the mother-in-law had cognitively declined to the point she couldn’t safely remain living at her home. With a shortage of long-term care beds in the city, the family took what was available and put their mother in independent living at a retirement community for $2,500 per month.

“We sold her house and moved her in but... she was starting to wander. She went downhill and couldn’t find her way around and wasn’t easily redirected.” 

After failing a mental health assessment, it was determined the senior needed to be on the residential care side of the facility, but no funded beds were available.

The woman advocated and argued for the one private pay bed available on that side for her mother-in-law, and got it but at a hefty price.

“It was almost $7,000 per month,” she said. “I got her settled in and put on a waitlist for a funded bed. The funded beds are based on 80 percent of your income so for her that was $3,600. We waited and waited for almost 11 months and I’d phone Interior Health every month asking where she is on the waiting list.”

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Almost a year went by and when the family started running out of money for the monthly payments, the woman advocated again and was able to get her mother-in-law a funded bed.

“Whatever you thought you were leaving your children get over it, they’re taking any penny you have.”

She said her biological mother lived at an independent care facility for 16 years, on the proceeds when her house was sold, until it closed 2019. Her mother was living on a pension.

“We were given eight months to find a place and when we said no beds were available to move her to, we were told to take her to the hospital, which would load up the emergency room, I just get so angry.”

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Her mother was moved into another care facility, forced to pay high private pay costs until she was accepted into a publicly funded bed 14 months later.

There's a shortage of long-term care beds in the province with wait times of up to two years in Kamloops and the Okanagan.

Children of aging seniors should be preparing several years in advance to avoid some of the difficulties, she said, starting with getting their loved ones mentally assessed even while they are still capable of living in their own homes.

“During the assessments patients are given a score that let’s Interior Health know what level of care they need,” she said. “The assessments are repeated every six months so cognitive declines can be tracked and patients can be triaged to available beds. If your loved one isn't in the system, you’re so screwed.”

The woman said being a loud advocate is a good tool to have.

“Tell your story and spell it out clearly, and be squeaky. Plead and phone back, and plead and phone back.”

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To enter a publicly subsidized long-term care home, a health-care needs assessment has to be made by an Interior Health Home and Community Care Manager, according to the Interior Health website.

Access to long-term care services is based on the person’s need and risk, and is for adults who require 24-hour professional care because of physical disabilities, or mental and behavioural conditions including brain injuries and dementia.

Those at increased risk are allowed to go on an interim waiting list for a care home in case a placement becomes available where they can stay until a placement in their preferred home of choice becomes available.

If it is determined someone needs long-term care after a hospital stay, a care manager will help them return home and provide supportive services, and assess their needs to start the access process.  Those with needs preventing the return home can be moved into a private pay long-term term care home while waiting for a publicly subsidized long-term care placement.

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