Today, in Canada, we spend lots of money on hospitals and there are many ways the government is trying to make the most of its health-care dollars. One of their methods is to send dying patients home with “heath care support”.
This was my experience.
On Tuesday, I was told that Jim, who was paralyzed from the waist down, would be discharged from the hospital on Friday. I would have to arrange for a ramp into the house and a wheelchair van. OK folks – would you know how to access these items??? Well I found out from sheer necessity with no help from the system.
The ramp was in place by Friday and I took lessons on how to load my husband and his wheelchair into the van which was borrowed from the local nursing home.
On Thursday the physiotherapist from Homecare visited me, examined the house and ordered the equipment that the hospital physiotherapist had prescribed. They arrived later in the day and:
1. The wheelchair was too small and did not have the reclining back as ordered.
2. The commode did not have a removable arm so Jim could slide from bed to the commode. He would have to be lifted.
3. The hospital bed was too short for anyone 6 feet and up.
On the day of discharge, I was presented with a paragraph showing Jim’s meds and was assured that they would be at my house when we got there – serviced by our pharmacy. The meds had different names than those I was used to from our hospital stay and it was impossible to organize their use without a schedule so I devised a chart ensuring that Jim would get his meds on time.
Unfortunately, the meds did not arrive at our door until 6PM and Jim was in lots of pain by then having missed his meds at 2PM.
We had NO support all weekend, then on Monday morning at 8AM our personal service worker arrived. Halleluiah, I had some help! He was great and was very good at lifting Jim and treating him with the utmost respect. We were saved. Unfortunately, as he left, he said: “See you next week!” The CCAC had assigned us one hour a week. Great!
For seventeen days, Jim was at home dying. During that time, we had to go to London (an hour away) for radiation on his throat for six days in a row. I learned how to load and unload a wheelchair van like no one else.
On the seventeenth day, Jim woke up choking and I called our homecare nurse who told me she could not be there for 2 hours since she was at home with her 3 year old daughter and her daycare did not open till 9 AM. For two hours, Jim and I took each breath together, one at a time – together.
When the nurse finally arrived she realized how serious this was and scrambled into action, but it was too late…he died at 6:50 the next morning.
The last thing my brave husband said to me was: ” I am sorry for putting you through this”.
I became somewhat of an activist after this experience and went to the Community Care Access Centre to let them know they had greatly messed up on our “Home Care”. They gave me some lip service and I was dismissed. It is such a huge bureaucracy that my smallness and seeming powerlessness did not appear to phase them at all.
My lesson is :
Don’t be the polite Canadian you have always been. Niceness gets you nowhere with government agencies that understand their jobs aren’t going away anytime soon.
Seek help where you can get it.
Pay for help sooner than later.
I know there have been some people who have been happy with homecare but if there is even one case like mine, it is one case too many.