Monthly Archives: August 2017

Homecare – You Decide!

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.

You decide.

 

Glad to Recover

My last post was a recollection of a turning point in my husband’s progressive death. It does not, however, reflect my mood now on a day-to-day level.

These days, I laugh all the time, I get up, get dressed and get out – almost too much. My life is rich with friends, community service, artistic endeavours, church and shopping ( of course).
I have discovered that my skills as a teacher and administrator have set me up well to assist in many community clubs and special community projects.  New friends have actively asked me to join them in their projects!
There are so many talented and big-hearted people in our little village that I always feel welcome and appreciated for anything I am able to help with. I am so in awe of some of the people here – potters, jewellers, geologists, engineers, military men and women, university professors, ministers – I could go on and on….

I am using my brain in a quilting business I set up and am having a ball designing quilts and building them in my own studio. I love, most of all, giving them away!! They seem to make people happy….
It is a rare day when I do not have a meeting somewhere or a sewing bee or an appointment. I think this busy-ness has been instrumental in recovering from my personal loss.
While I remember the bad times I have lived through, please know that my strength this year is really amazing. I feel, this spring,  as though I am coming out of my own cocoon and am realizing a whole new beginning for a whole new me.
Thank you to my friends, family and readers of this journal for supporting me and loving me through thick and thin.
Talk to you soon…

The Final Day of Phase 1

Five years ago today, on August the first, 2012 was the day my husband collapsed due to  cancer in his spine. He could feel himself going and called me. I got there just in time to try to hold him up and get him out of the small shower room he was in. Instead, I got stuck under him and had to manipulate around him in order to drag him to the bigger bathroom. He could not move his legs and his arms, while still working,  were very weak.

I called our nurse and she called the ambulance. It was ten o’clock .

Jim said he was fine. There was no pain and he would be OK by morning. Just give him a pillow and a blanket, and he could sleep on the floor.  How could he be funny at a time like this?

When the ambulance arrived, I guided the two attendants up our 16 step spiral staircase  to their 200 pound patient. They had a rough time getting him down and out to their vehicle, but in he bumped.

As they pulled away,  there were no sirens ,just a distinctly dark and  suppressing silence.

I stood there on the front sidewalk and watched the ambulance go around the corner at the end of our cul-de-sac. I knew in my heart that this was a change in our course and possibly our final battle with Jim’s deteriorating health.
I did not cry.  I was senseless, palpably numb, and scared to death.

Back in I went, got dressed and left for the hospital. It seemed surreal. I was feeling totally clueless, devoid of feeling and I just kept going – like a clock – the beat of the minutes just going on and on and on.

I met a RIDE program as I entered the city and told the officer that I was following the ambulance that was carrying my husband. He did not seem moved. I could not understand his lack of empathy at the time.

I arrived at the hospital and saw his empty ambulance. My race to the emergency door was interrupted by a security guard who told me to move my car to a parking lot a distance away.  Again, I could not understand why these people could not see my fear, my dread, my sadness.

I entered the emergency department and explained the situation to the lady behind the glass. She asked me to take a seat. Why could I not be with him? She did not answer, only pointed to the chairs.

I sat.

Ten minutes later I am allowed to enter the sanctity of the inner room where he was. The doctors of the inner sanctum had not been told I had arrived.  Why is this not important to anyone but me?

There were no beds available so they were going to send him home with me – a 200 pound paralyzed man – and then they realized – OH YA – THIS DUDE CAN’T WALK!!!  DUH!

Then they said he may have to lay in a hallway since there were no rooms.

Then they found him a room.

I sat with him for a while and at 3 in the morning I went home.  Nothing would happen till morning.  Little did I know that there were a limited number of nurses on staff at night and Jim could not get help for anything including toileting.  It was a night of devastating downers for him and he was exhausted when I arrived in the morning.

He regained some of his strength with meds over the next two weeks in this room and was transferred to a more humane setting for the last four weeks of his hospitalization.

He worked hard with the physio nurse and that hard work and the meds gave him the ability to move his toes a little and also bear his weight for a short time – but this would prove to be a dead end.  Literally!  The powers- that -be determined that he was not going to get better and he could go home and get his meds there under my care and the “home care professionals” who would support me.   That is another story and a horror story at that…

August the first was a nightmare I shall never recover from.  It is a day of the year that signalled the end of my life as it was. My very identity and my reason for living rolled away from our home in an ambulance – alone and apart from me – the first of many partings….and the beginning of the end.