PSW Care for Dianne Friesen

Why did we start this fundraiser?

My brother, my mother, and I live with the same chronic illness, and our mother's condition went downhill suddenly this past Christmas. The illness is called myalgic encephalomyelitis (also known as chronic fatigue syndrome). Some people call it ME/CFS or ME for short. Mom's symptoms are currently severe. She is bedridden, unable to sit up, unable to feed herself, and unable to have conversations longer than a few minutes.

My brother, Jared, and I are her primary caregivers. We help her with most personal care needs, such as food prep and feeding, changing, taking meds, and brushing teeth. My husband, Joel, helps too, as does our son. We cook, run errands, do laundry and dishes, talk with doctors on her behalf, and cover all of her administrative needs. She's on a restricted diet and takes specific supplements throughout the day, which adds extra work to everyday tasks. Mom's first call for assistance usually comes around 6:30 or 7 am, and responding to her needs lasts through the day until the end of her bedtime routine.

As a family, we're doing everything we can, but we're still not able to keep our heads above water. Joel and Jared work full-time jobs and have limited or no availability during work hours, yet Jared is often called away from work for caregiving. I juggle my son's and Mom's needs while managing our household. Jared, Joel and I spend our evenings and weekends helping with a range of tasks. It's difficult to express how the pressure and the last-minute nature of many of Mom's needs have affected our lives. Generally speaking, we have little time for rest, and we've lost any sense of routine and stability. Joel and I are especially concerned about the way it's impacting our son.

Personal support workers (PSWs) can help us care for Mom, however we must pay for them out-of-pocket. As some of you know, our budget is already stretched thin, especially because I've spent the last five years unemployed while recovering from my own severe ME symptoms. A few friends have asked how they can help, and when someone suggested starting a GoFundMe campaign to help cover the cost of PSW care, we decided to give it a try. It wasn't an easy decision, but one born out of necessity.

What is Myalgic Encephalomyelitis?

One of the main symptoms of ME is a disproportionate lack of energy, where small activities take longer than normal to recover from. For instance, last week, Mom lost her small reserve of energy after feeding herself. This was also my main symptom when my ME was severe a few years ago. Things like taking a shower required one or two hours of rest afterward; when Joel drove me to medical appointments an hour away, I needed two weeks of rest.

For people with ME, extreme exhaustion after an activity is called post-exertional malaise (PEM). PEM is horrendous because it prevents you from living your life, seeing your loved ones, earning a living, enjoying hobbies, or even watching TV, reading books, or listening to music. There are a host of other symptoms that can go along with PEM as well. When Mom is in what we call a 'crash,' her heart races, she experiences tremors, peripheral neuropathy, and severe weakness.

When we talk to people about what Mom's going through, they often sound surprised to hear what it's like. Tens of millions of people around the world live with the staggering consequences of ME, yet few people know anything about it. That's why I've linked to some videos about ME below. Please watch them when you have time.

Where have we looked for help so far?

Our local government-funded home and community care service (the Local Health Integration Network, or LHIN) has the resources to provide Mom with some, but not all of the PSW care she needs. Their PSWs come for one hour on weekday mornings only. We need more help, especially in the evenings with dinnertime and Mom's bedtime routine. So we're on the LHIN waitlist for more PSW hours, but we were told that may take some time.

We're also in the process of applying for in-home care through Mom's health insurance benefits. Our doctor has requested PSW/nursing care for 1-4 hours daily. Until the insurance company processes our application, we'll be paying out of pocket for private PSW services ($35-42 per hour). The insurance company's approval is also not guaranteed and, even if approved, may only be approved for a portion of our needs. We are hoping for the best, but have to work through the process and wait for their decision.

We've set up Meals on Wheels, which makes frozen meals that fit within Mom's restricted diet for the most part. They're the most affordable option we've found (just over $5 per meal), and each helping usually gives her leftovers for the next day. This is a huge help, however we do still need to prepare other foods that Mom requires. Her doctor recently asked her to eat a high-potassium diet, so we prepare and cook these things for her separately.

I've also reached out to members of the community, including churches. For urgent and immediate needs, I occasionally post on a Facebook group for people in our area. One local pastor kindly wrote to his congregation with a list of simple and practical ways that volunteers could lend us a hand. We have yet to hear if anyone from that church is able to help. I'm also still in the process of contacting other churches.

What about long-term care?

Mom's condition is temporary. Since 2017, she's had a few similar 'crashes,' and she recovered from each of them within 2-3 months. Her latest crash is more severe however, so it's going to take longer. But every indication is that her body wants to heal, so we expect her to get better long before her name would ever rise to the top of the waitlist for a bed in long-term care.

Helpful videos about ME

Documentary: Left Out (46 min)

I watched this documentary for the first time recently, and I found it eye-opening. It follows a doctor and several ME patients through a clinical trial for a potential new ME treatment. What I loved is that it tells their stories really, really well.

TED Talk: When you have a disease doctors can't diagnose (17 min)

This short video explains really well what Mom is facing. The speaker, Jennifer Brea, shares some surprising things from her own story, and about the history and current view of ME in the medical establishment.

Documentary: Unrest (1h 37m)

If you have Netflix, you can also watch Jennifer Brea's award-winning documentary, "Unrest." See footage of her battle against ME, watch how she puts her research skills to work to understand the condition, and how she discovers other people with ME around the world who are fighting similar battles. Link: https://www.netflix.com/ca/title/80168300

How you can help

The CDC estimates that up to 24 million people around the world have ME. However, around 90% of them are undiagnosed, and many don't know this diagnosis even exists or how to manage it to reduce their symptoms. Living with it is hard enough, but living with it in the dark is much worse.

This lack of awareness has real-life consequences. For instance, when Jared came down with the symptoms of ME (before we knew what it was), our family physician diagnosed it as anxiety, and prescribed counseling sessions with a social worker. This is a common view among doctors who haven't heard of ME or doubt its legitimacy as a physiological condition. ME patients who aren't aware of their diagnosis struggle through their symptoms while being sent on wild goose chases. They also risk worsening their symptoms, because they don't know how to manage them properly. Both patients AND medical practitioners need to hear about ME.

So here's how you can help:

1) Please watch the films I've linked to above.

2) Please share them with everyone you can – friends, family, colleagues, clients, neighbours, etc.

3) Tell us what you think of the films, and if you get feedback from other people about them, please share that with us too! It's encouraging to hear that the word is getting out and how people are responding.

4) And if you're able to donate to our fundraiser, that money will go directly to private PSW care while we wait to hear from our local LHIN and Mom's health insurance provider. And if they provide less PSW care than we need, your donations will help fill the gaps.

With our sincere thanks,

Dana Crawford & family

Photo caption above: Our mother, Dianne, with her grandson