Navigating Holiday Stress with Disabilities: Challenges and Solutions
By: Ryan Lythall
For most people, the holidays are very stressful. Whether shopping, cooking, or travelling, this time of year can be physically and mentally exhausting.
For people with disabilities, it can be almost impossible.
Please remember that we are all different, including people with disabilities. PWDs needs, living arrangements, and how their disability affects them vary from person to person. Some people with disabilities live with family, in a group home/long-term care facility, with a partner or roommate, or by themselves. Also, some are fully independent, may need assistance for a few hours, or, like myself, need 24-hour care. Assistance may be required for cooking, eating, shopping, travelling, cleaning, etc. Regardless of what type of help is needed, another person is involved.
In general, finding someone to help is tough. During the holidays, it can be even more challenging.
Most people don’t want to work during the holiday season, especially if they have a family. While I fully understand their reasons, it does put added stress on those who require help, especially for medical reasons. Present company included. As I type this, I’m in communication with the two agencies that provide me with staff and my private PSW. We’re all trying to cover shifts over the holidays. We’re figuring out staff availability and who can step in.
As far as my situation goes, if nobody’s able to come in, my only option is for me to go to the hospital.
In that case, because each shift is 8 hours long, I would need to spend at least 8 hours in the ER, and if I’m unable to book Para Transpo, I’d need to take an ambulance or try to get a ride using a wheelchair-accessible Taxi.
Here’s the thing about ambulances. Ambulances aren’t able to take wheelchairs. So, whenever I need an ambulance, my wheelchair gets left behind. For the eight hours, I’d need to be in the ER. I’d be on a stretcher and maybe get a bed if I’m “lucky,” get a bed. Either way, I couldn’t use my wheelchair for at least eight hours.
Also, due to my physical disability, I cannot use a cell phone. I would have no way to communicate independently with my friends and family. With that said, how will I get home 8 hours later?
At that point, my only real option is for the ambulance to pick me up again, especially since my chair was still at home. Unfortunately, it’s not that simple.
For starters, our healthcare system has a staff shortage, including Paramedics. Due to the shortage, there’s a strong possibility that an ambulance won’t be available to take me home.
If that’s the case, one of the hospital staff would either need to call Para Transpo or a wheelchair-accessible Taxi van to hopefully pick up my chair and bring it to the hospital.
Two questions come to mind.
How would someone get into my place in order to get my chair?
Since I require 24/7 care, who would accompany me in the cab or on Para Transpo as I make my way home?
I’ve asked those questions multiple times, and the answers seem to change, which only complicates matters. Granted, my situation is unique, at least regarding needing 24/7 care. However, needing someone to pick up their wheelchair or scooter after a hospital stay is a common problem. One that needs to be fixed.
I have seen pictures and videos of ambulances with ramps in other cities. Just for the record, I don’t think they were patient-transfer service vehicles. I haven’t even mentioned the medical aspect yet. In my first blog post here, I mentioned that I’m unable to breathe on my own, so I use a portable ventilator. In that same post, I also mentioned that I need to do a medical procedure, called suctioning.
Due to my disability, I’m physically unable to cough. A thin, long suction catheter is inserted into my tracheostomy tube, which goes into my lungs. Once the catheter reaches the bottom, someone puts their finger on a valve, and mucus gets sucked up by a machine. The mucus travels up the catheter into a bottle. While I’m getting suctioned, I’m not breathing. Needless to say, it has to be done quickly and effectively.
Based on my almost 48 years of experience, I can say that it’s challenging to teach both PSWs and Nurses how to suction me properly. Improper suctioning affects the amount of air that I’m able to receive, my ability to speak well, and increases my risk of getting a respiratory infection.
On top of everything mentioned above, one of my other significant concerns about staying in a hospital is whether or not a nurse will be able to suction me properly. Also, in the rare case of an emergency, would they know what to do? In my experience, the answer is no.
As I also mentioned, my situation is unique. Each of us has our own story. Our own story of what life is like for us, not just during the holiday season, but 365 days a year.
People with disabilities are no different than anyone else. It’s the way we’re seen and thought of that makes us seem different. Remember, we’re all in this together, and we all need a little help from time to time.
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in his weekly Ottawa Life column: https://www.ottawalife.com/author/ryan-lythall