Being a Caregiver for Two - Part 1

When I share our family's story many people ask about the complexity of not only having to care for one chronically ill person but two.  Many people are caregivers to a loved one.  Many care for an aging parent or relative.  Our situation is a little different in that this is about my wife and my son.  Not the typical caregiver scenario.  This is something i've thought about a great deal.  I thought I would approach this in two parts.

1)  Explain what is different between navigating that adult and pediatric health care system

2)  The difference between caring for your child and your spouse.

This is Part 1

Adult Vs Pediatric Health Care

When Susan and I were first married we moved into a 2 bedroom basement apartment.  Nothing unusual for a young couple starting out.  After about 6 months of being a cellar dweller an opportunity came up to house sit for a University Professor who was going to be taking a 1 year sabbatical.  They needed a house sitter.  We jumped at the chance.  We moved from a basement apartment to a 2000 sq ft home.  We wondered what we would do with all the space.  Trust me; it wasn't a big problem.  The worst part was house hunting after our year was up.  We were spoiled, and the reality of purchasing a home that was within our means was no small adjustment.

This is how we feel when we compare pediatric health care and the adult system.  We are very spoiled.  It is not the fact that we can call, text, page, or email or pediatric care team.  It is the fact that we are welcomed and encouraged to do so.  In the adult world you constantly feel like you are being an annoyance.  We get vague answers to questions.  We've had a treatment plan suddenly change with no explanation.  At times, we feel like we aren't being told the whole truth.  This is where “trust” starts to play a role.  If Susan, were to go for an ECHO I don’t have total confidence that we would be contacted if there was an issue.  Communication is that bad.  When we go to an appointment we feel like we are on a treadmill and move from station to station with robotic interaction.  I think they have learned not to ask us “How are you?” because we will actually tell them, and we will unload on them.  Why is the adult world so bad when it comes to basic human interaction?  Because no one has ever forced them too. 

There is a significant issue in the adult health system and that is age.  Many people in the adult system tend to be older, especially in the cardiology world.  Many times when Susan goes for her clinic visits or has tests done she will be mistaken for staff or we get to hear the whispers “she’s only *39”.  Seniors are treated terribly in our health care system and many of them come from an era where they didn't question Doctors.  This is a great environment for a Doctor who loves dealing with “compliant” patients.  You know the compliant patient who do as they're told and follow orders and most importantly don’t ask a lot of questions.  What makes matters worse is that many of our seniors are left to struggle with poor information and limited access to people who could help them.  Care must continue for patients when they are at home and conduct their everyday lives.  Lack of communication with your care providers puts many of our older citizens unnecessarily at risk.

To illustrate this point I recall when Susan had her open heart surgery in Edmonton.  Post Op she was put in a room with a fantastic lady who happened to be a retired school teacher.  Wonderful lady.  She was in for a valve replacement.  Because Susan had celebrity status in Edmonton (we had just spent 6 months in this very hospital with Russell) we had numerous visitors from pediatric cardiology.  Susan’s surgeon stopped by daily to see how she was doing and the surgical fellow also stopped by daily.  Susan’s room mate however, did not see her surgeon until Day 3.  Susan’s room mate was understandably ticked off, especially after seeing the parade of cardiologists coming in and out of the room to see Susan.  It is worth noting the surgeon who did Susan’s surgery has a dual practice in both pediatrics and the adult program.  This was no doubt a reason why Susan got different treatment; this Doctor is used to dealing with demanding parents looking out for their little ones. 

Apathy was also clearly highlighted when the University of Ottawa Heart Institute conducted a study in the fall of 2014 of Manitoba’s Cardiac Sciences Program.  In the report, surgeon’s attitude was described as being “disinterested” in post-operative care.  That is stinging language but emphasizes my point.

Susan and Russell are both complex cardiac patients.  They both have their own unique issues and I wouldn't say one was more complex than the other…they are just at different stages of their cardiac journey.  Comparing the level of care that they receive is stunning.  Russell is followed by 5 specialists which does not include his pediatrician.  This also does not include his support from Disability Services Manitoba and the assistance that he gets at school.  Susan is seen by one cardiologist.  To clarify, she is followed by whoever happens to be on clinic duty the day she is booked for an appointment at the Heart Failure Clinic.  There is no guarantee the person she sees will be the same person from appointment to appointment.  Her General Practitioner’s role is that of prescription “topper upper.”  That’s it.  Somewhat different than the entourage that Russell sees.

From what I have written you might think that I have issues with the care team that Susan has.  I don’t.  I think of the many people that she has seen and I believe many of them are quite excellent at what they do.  The problem is not seeing the same people consistently and an overall culture that does not integrate the patient into the care process.  They keep you at arm’s length.  If you were to phone any of the nurse clinicians at the Heart Failure Clinic you would get the same voice mail, no matter who you called.  The phone is never answered.  The initial message states that the message will be followed up on in 24 hrs (thanks for nothing) and that if the matter is urgent to head to your local emergency room (I’m sure ER docs love that).  In comparison, pediatric cardiology nurse clinicians will answer their phones, if they are available.  If you get their voicemail, it asks you to leave a message or alternatively to contact cardiology paging which is monitored 24/7.  You can ALWAYS reach them.  This is "access" and we are spoiled.  Sorry Adult Cardiology…you need to pick it up a notch.  It is possible in our health care system to provide excellent care and be accessible.  It’s time to get rid of the “artificial” barriers.  Another bad piece of news for those in adult cardiology.  You will be forced to change.  As more pediatric patients graduate from the pediatric program to adult.  They will be expecting more.  Once you've had great care, it's not easy to go back just like it would have been hard to go back to a basement apartment after living in a 2000 sq ft home.

*for the record Susan is not 39 (this is a closely guarded secret), but she does look the same, as the day I met her!