Your stories: Part 4

Hey there, time traveller!
This article was published 16/04/2020 (2158 days ago), so information in it may no longer be current.

Deborah Nielsen

My husband and I are in our 60s and take care of our 32-year-old son, who has quadriplegia and is medically fragile. My husband is a virologist and has been working from home, as well. He, himself, is immunocompromised by drugs that he has to take for Crohn’s disease.

Two years ago, the home-care system decided to re-negotiate the care our son had been entitled to for many years. They no longer would send us a full-time nurse and wanted to break his care into part-time shifts.

For someone with complex medical needs, we felt that this was unsuitable because of steep learning curves and difficulties with infection control.

After months of disappointing meetings to reinstate our services at the level we had received previously, we decided to try and hire a nurse ourselves at great expense. Before we got the chance however, COVID-19 arrived and we knew we could not allow anyone into our house to help due to the risk. As well, we knew that all available nurses would be wanted on the front lines.

Now after the two long years of giving 24-7 care to Mark without help, we have to keep on doing it, probably until a vaccine is ready.

Because his condition often necessitates many hospitalizations, we are working even harder to keep him healthy and away from any outside situation. Mark has a tracheostomy, is wheelchair-bound and is tube-fed. He has severe lung issues and would not survive a bout with this virus.

My husband is also definitely vulnerable and, possibly, I am too because of my age. Every day we try to get through, isolated completely, hoping against hope that we will make it on our own through the next 18 months.

Although we are doing well so far, the lack of support is taking a toll. Exhaustion is our worst enemy but we know how important it is to stay the course at all costs.

Mike Barry

It’s a crazy time for everyone. Nothing is normal, but then, what is normal? Easter was a very challenging day. Everything seemed surreal. What is new for some is not new for me. I had few resources before and even less now.

What confuses me more than ever is the response of service providers. Most everyone is working from home and an Easter phone call or click of the mouse away, yet I receive fewer emails and calls than ever before. Veterans Affairs Canada, (Shared Health Crisis Response Centre), Klinic, CMHA, WRHA and Royal Canadian Legion are silent. They have no plan for their clients other than the usual safety plans, for themselves, mostly.

What about the welfare of their senior clients and members? As a veteran and senior with PTSD disability and celiac disease, I feel more abandoned than before. I get no calls from family. I consider the above six government organizations as essential services that should be open and available 24/7 during this crisis and the remainder of it. Then they take a four-day weekend off? Why? They are at home, anyway.

Where is the leadership? Hiding in their cold basements? Where is Pallister? In his Wellington Crescent mansion? That is shameful.

Last year, I was pressured to take a placement in a nursing home. If I had bowed to that pressure where would I be now? Deceased with COVID? And no one would be able to see me! My funeral service would be held virtually. A nursing home is the most dangerous place to be right now, lots have died.

If I do get a call, it’s from private callers, as if I had the plague. What an insult. What about the homeless, while we are hoarding toilet paper, sanitizer and hair dye? I called the (Crisis Response Centre) on Bannatyne over the weekend and reception said that they were not taking walk-ins, and when I asked where they were referring patients who might need more care, they didn’t know.

When this pandemic is over, I think these agencies will have a lot to answer for, more than they did before. There is no excuse for not keeping in touch with vulnerable clients when all you must do is make a quick holiday call or a reassuring email.

That goes for everyone in government. I haven’t heard from my MP, MLA nor my city councillor! Are they hiding in their cold basements, too? It seems family and friends are scarcer, too, and they are all at home or supposed to be. It’s totally ridiculous and makes no sense. Even the clergy did not get back to me! It seems this crisis has taught us nothing. I lost my smile and joy last year; I must relearn it.

Janine Milani

The new year arrived. We were hearing about China, but life went on as normal. Special Olympics Canada was having their National Games in Thunder Bay at the end of February. We were having a nice winter. Life was good.

I still got my Prairie-born, alpine-skier son to the National Games in Thunder Bay with support from the Special Olympics Manitoba family and family in Thunder Bay. It turned out to be a great National Games. He came home with three bronze medals. His teammates came home with gold and two other bronze medals, also.

Then two quick weeks later, the city shuts down. We have a pandemic that shuts down all weekly sports activities with Special Olympics Manitoba and also throughout Canada, as well as any work placements established with local businesses.

If you’ve ever encountered a Special Olympics athlete, you will understand how devastating this physical distancing is for them. I can only speak for my son, who is so bored, and so misses going skiing, curling, swimming, bowling, as well as to his job three days a week.

And now the summer sports that would usually be ramping up are not. Many of these athletes benefit immensely from the social interaction that comes with being involved in sport, especially an individual with autism. This is my greatest worry with this social distancing.

I am so thankful he is healthy and still has his two roommates at his community home, but they are all homebound. They cannot visit their families, friends, the mall. I hope this does not set him back socially too much.

All these years of working on social skills and appropriate interactions, possibly crushed by two to three months of social isolation. Mental-health and brain-health experts will likely be busy when all this is over. We are working hard at staying home, in the hope this will pass sooner, rather than later.

Kimberley Dudek

As a person with Asperger’s syndrome, dealing with so much change in a short time span has been very difficult for me. With public facilities such as gyms and libraries closed, I have been left with no mental-health support.

Being autistic in these times is a huge challenge, and I am more grateful to my wonderful father, Bryan Dudek, than could be imagined. I am so grateful for all the help my dad has been giving me, taking me shopping and calling me every day to check on me.

Dad took me to get a couple of things on Easter Monday and he asked me for one simple thing, a newspaper. I wasn’t sure if I could find one but I checked and began to cry when I couldn’t even get him something that simple.

I felt so sad that for every time my wonderful dad has asked me to get something for him I haven’t always been able to find it. It makes me cry to not be able to help my dad, so I am sharing this story of an unsung hero of this pandemic and would beg for this story to be told so that my wonderful dad gets the recognition he very richly deserves.

Rosemary Pugsley

I am a 73-year-old quilter living in Petersfield and decided today to get on the bandwagon that many of my quilting friends have already joined. I dug out all my scrap fabric pieces and I am making surgical caps and head bands for our nurses.

I go out once a week to get my mail and newspapers from the general store, which is four kilometres from my house. I can also get a few groceries from there, as well.

I have had three craft fairs cancelled so far, so my income will be less this year. I keep in touch with my quilting friends through social media.

My daughter lives in Winnipeg and we decided to celebrate Easter, my birthday (April 24), Mother’s Day and Father’s Day when this is behind us. I have my cat to keep me company and I have a great neighbour who brings me what I need from time to time.

Anonymous

We have a house solely dedicated to be used as an Airbnb short-term rental service since 2017. We hired a student on a casual basis to clean the house. Due to COVID-19, all future reservations were cancelled from the first week of March onward.

We were magnanimous to make full refunds, since cancellations were due to the unprecedented factor (coronavirus). Since then, the house has remained empty but the mortgage, property tax, hydro, water, condo fees, etc., accrues.

There is no timeline to when this will be over. We do not qualify for any benefit. The palliative from the MLA is to ask for deferrals from the bank and city on debts. Now we are also faced, like other people, with layoff threats from our other jobs because of COVID-19 closures.