Saturday, May 28, 2016

Our Week in Health Care

I read an intriguing article this week about a study that was done to understand the what caregivers go through on a day to day basis.  There has been more information coming out lately about the strain that caregivers are put under when caring for a loved one.  I thought this was an interesting read.

Forbes: Using Big Data to help understand the lives of Family Caregivers

This was of particular interest to me as I have tracked our various activities in health care through this blog and previously on our care page.  Although I think writing is a great outlet it wasn't until I "live-tweeted" a trip to the emergency room that I saw the emotional roller coaster we were on.  Reading my tweets later I saw a minute by minute narrative of a fairly straight forward 5 hour trip to the Emergency Room.  The range of emotions was eye opening.

In the spirit of understanding what complex care is like, I thought I would share a little bit of what our week looked like this week.

Monday - Victoria Day

A quiet day just the normal medication routine.


  • 8:00 AM - 4 Meds (All Liquid) - one which needs to be blended with water and must be followed by 4 oz of juice (to prevent mouth sores).
  • 8:00 PM - Same 4 meds are given as in the morning.  One additional med is given in the evening in the form of a sub-cutaneous injection.
  • Her med routine is straight forward but she has to take meds 4 times a day.  


  • Normal Med Routine - Same as above - 7:15 AM and 7:30 PM - We give them earlier because it's a workday. 
  •  Call to the Mazankowski.  As we are waiting for a date for Susan's surgery, we had not heard from them for a couple of weeks.  Was able to talk to the surgeon's office.  Our surgeon had been out of the office the previous week and I was told they may discuss Susan Wednesday or Thursday.
  • 7:00 PM - Skype Meeting - Stollery Family Centred Care Council Meeting - Heard a patient story from a Mom who chronicled her story of losing her infant son.  Great discussion following this presentation.  Some of the points she shared could make great topics for several blog posts.  Rest of the meeting was normal council business.  Finished up around 9:15
  • Because I had a meeting I did a lot of getting the kids ready for bed routine ahead of time.  Susan cannot go upstairs and put the kids to bed.  I took a short break from my meeting to ensure the kids get into bed and weren't behaving like total maniacs.
  • Work


  • Normal Med Routine  7:15 AM and 7:30 PM
  • Work
  • No Call back from Susan's Surgeon
  • Normal Med Routine  7:15 AM and 7:30 PM
  • Russell had some significant abdominal pain.  We saw something like this before (previously we had taken him to Emerg).  We decided to keep him at him (from school) and gave him Tylenol for the pain.  If the pain continued we would take him to hospital.  Fortunately, the Tylenol did the trick and he seemed fine after lunch.  Experience noted in case this happens again.
  • Susan's Mom heads to Health Sciences Centre for surgery.  In early May they found a mass in the area of her Gall Bladder and Liver.  Surgery was done successfully.  Gall Bladder was removed, Liver was fine.  Mass was removed and cancer not indicated.  This was a huge worry.  The news couldn't have been better.
  • Work
  • No Call back from Susan's Surgeon


  • Normal Med Routine  7:15 AM and 7:30 PM
  • Work:  Had "The Talk" with my New Boss.  I have a new Director at work.  She had been given some vague information about the health situation in our family.  She called me to discuss.  Awkward conversation as I am not asking for a leave of absence when Susan goes for surgery; I was telling her.  I didn't have time to give her the full history.  It was a good conversation...I have never had any issues discussing how our health situation effects work (and it does),  Work has always been very supportive.  I have also gone to great lengths to ensure my employer is well informed.
  • Susan went to the hospital to see her Mom.  Major activity for a person who can't walk more than a few hundred feet without being winded and having chest pain.  Fortunately, things went OK
  • No Call back from Susan's Surgeon - Getting frustrated

This past week was a short week and in reality was fairly quiet from a health care point of view. Also, many people ask what is going on with us. So this short diary gives a little glimpse into what is going on in our house.  With Susan's upcoming surgery we have a dark cloud hanging over us right now.  It's a worry.  As much as we try to keep moving on with our lives that is always in the background.

The other point that I wanted to make is that dealing with health issues is not uncommon.  There are literally thousands of caregivers out there who are dealing with situations like ours and many of them are much more complicated and time consuming.  The situations are also very diverse.  Someone who is caring for a parent suffering from dementia or a parent who is caring for an adult child who is a quadriplegic.  The situations people find themselves are diverse and complicated to manage.  I am well aware that our family is not the only family dealing with these kinds of issues.  These people are everywhere and they need our support.

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