I spent 24 hours in the ER just over a month ago, but not because I was sick. I was sent to the ER because none of my regular caregivers were available.
In the weeks since efforts have been made to find a possible solution, but it’s challenging.
Before I went to the ER, I posted on social media about what was happening and why. When I came home the next day, I had several comments and private messages from people wanting to help or work for me. At first, I was genuinely shocked and grateful for the outpouring of support.
However, as I replied to everyone, reality set in.
Almost everyone I replied to said no, or, eventually, stopped answering.
The main issue was, and is, that there’s no guarantee that my next caregiver will appear.
As I’ve mentioned, all my shifts are eight hours long. Two things happen if the next person doesn’t show up and nobody else does.
First, the person chooses to stay for sixteen hours, which isn’t safe.
Or, second, I get sent to the hospital.
I understand that most people don’t want to be put in that position, especially if they have a family or another job. You expect to go home when you work eight-hour shifts or any type of shift work.
Unfortunately, I can’t guarantee that. I completely understand that.
Another common concern is the fact that I’m ventilator dependant and that I require frequent suctioning. Understandably, most find it intimidating and don’t want to be responsible if something happens.
Again, I completely understand that.
All of the reasons and concerns are valid. As for me, it leaves me with very few options right now. Almost back to square one.
I say almost because my situation has become worse in one regard. Financially.
Over the past month, I’ve had to rely on my private PSW to pick up shifts. Up until now, my private PSW would work every Friday evening. While paying out of my pocket was challenging, it was manageable and consistent. I paid them every second Friday. If I needed to adjust my spending, I could make slight adjustments.
Since coming home from the hospital, my private PSW went from working once a week to two or three evenings, plus weekends. Great news for them, and I enjoy having them. Bad news for me financially.
The whole idea of hiring someone came from me. In July last year, I wanted to see Rage Against The Machine at Bluesfest. To feel as safe as possible, I contacted one of my former staff who worked for me through an agency several years ago. They agreed, and everyone was happy.
As part of our agreement, they worked every second Friday during the summer. Another big reason I did that was to feel more like myself, socialize, go to events, etc.
On a regular evening, I have a nurse from 4 p.m. to midnight. Typically, I stay home. If I decide to go out, it’s a process. The nurse must call their manager to tell them where I’m going and what time. Also, there’s a chance that the nurse could refuse to go out, which has happened. So, I choose to avoid the situation altogether.
My way of getting around that, temporarily, was to hire a PSW privately. I shouldn’t have to do that; it isn’t my fault I was forced into having nurses. Again, I’m not sick, and nothing has changed regarding my care.
It’s due to a broken system.
Back to my story.
As summer rolled on and September drew closer, the nursing schedule changed. I was asked if I could have my private PSW work every Friday. I was very hesitant about it for financial reasons. I also had a feeling that it would lead to me having to pay for more shifts.
The reality is healthcare agencies are severely understaffed and also underfunded. As a result, an increasing number of people with disabilities and those requiring care in their homes, are being forced to pay out of pocket. Many of those, including me, are on ODSP and have a difficult time paying bills and buying groceries. How are we supposed to afford to pay?
I’ll use my situation as an example.
Since July 2022, as of today, I have spent $5632 in paying to have a private PSW. I had no choice, and I still don’t. As I said earlier, if none of my caregivers from the agencies that I deal with are available, I need to ask my private PSW to cover the shift. If they’re unavailable, or I can’t reach them in time, off to the ER, I go.
As far as the $5632 goes, I don’t know if I’ll ever get it back. There’s a way for me to claim it on my income taxes, and meetings are ongoing to see how or IF I’ll be reimbursed. To me, that’s A LOT of ifs.
Some people suggested that I do a gofundme page. I HATE having to ask people for money. I know many are struggling.
Times are tough, and thanks to our failing healthcare system, it has become even tougher.
Our system is broken, and as a result, I am broke.
