Being a Caregiver for Two - Part 2

In my previous post I described some of the differences between pediatric and adult health care that we experience in cardiology.  The second part of my caregiver challenge is a lot more difficult to address and much more personal.

How you pursue your role as a caregiver for a loved one is a unique experience for everyone.  No two patients are alike just like no two caregivers are alike.  So some of the things I will share from my experience will be unique to us. 

Russell

Russell was our son we thought we would never have.  As many know, at one time we were told that it would be unlikely that we would ever have our own children.  Russell proved that assumption wrong.  Because we thought we would never have our own biological child makes us that much more thankful for him.  If you add all of the medical complexities he has endured it reinforces the thankfulness we feel for every day we spend with him.  He is vibrant and full of life.  In spite of the many challenges we may face in the future every moment with him is a gift.  One of the unique features of caring for a medically complex child from birth is that he is unaware of his unique situation.  Medications, doctors, hospitals etc have always been a part of his life.  He doesn’t know anything different.  He is far more accepting of his situation than we, as parents, are.  This is also part of our frustration.  We would like him to know a life without all of the health issues he deals with on a daily basis.  This is a loss we have to deal with. 

It is a horrifying experience to watch a child suffer.  To sit by an ICU bed for days and weeks is probably some of the most mentally challenging things I have ever done.  It wasn’t until we left the PICU that I realized how difficult it was.  There is a palpable intensity when you enter a PICU.  It is an adrenaline rush that I now know was not healthy.  To this day when I see a TV show or a commercial that shows children suffering I visibly wince.  The raw emotion is still that close to the surface 7 years later.

Being a caregiver to a child is also challenging because children are always changing and developing.  Procedures that are done on a semi-routine basis are always different because our son is always changing.  His understanding of his environment is changing.  We need to be open and honest with him as he needs to trust us.  He needs to understand that we will not allow harm to come to him in spite of the fact that we are subjecting to painful and invasive procedures.  That is a difficult balancing act.

Susan

Caring for your wife is a much different task than caring for your child.  As I mentioned, Russell was the child we thought we might never have.  He was a surprise.  He has been surprising us every day since he appeared on the ultrasound monitor.  Susan’s situation is much different.  I met Susan 30 years ago.  I think I could safely say that I know her reasonably well.  Susan was not ill when I married her, and like any young couple we had our whole lives in front of us.  A blank slate.  We imagined all of the things we could accomplish together.  Marriage is a partnership and a joining of two people.  When one partner becomes ill, the other feels it.  Imagine that a marriage is a ship and when illness comes to one partner it is like that ship was struck by an iceberg.  Even though one part of the ship has been damaged and is taking on water, the undamaged portion will still sink because the two are inseparable.  

When Susan was diagnosed with cardiomyopathy in some ways it was a relief.  It explained a lot.  It became fairly clear to us that this was something that had been afflicting Susan for some time but up until that moment we had no explanation.  Susan was clearly affected by her heart condition for years prior to her actually being diagnosed.

It is very different being a caregiver to your child than your spouse.  The added complexity of our situation is being a caregiver to both at the same time.  This is particularly difficult for Susan who takes on the role of patient and then has to turn around and become a caregiver to Russell.  This provides for a roller coaster of emotions.  It is also somewhat dangerous as she readily identifies with the issues Russell has to deal with as she has to deal with many of the same issues.  

While one patient is doing well and is stable the other may be having difficulty.  I am extremely thankful that we have been fortunate that in the many challenges we have faced; we have never had a situation where both of them (Susan and Russell) were in the hospital at the same time or where we have been doing crisis management simultaneously.  However, that risk definitely exists and creates a significant amount of stress and worry.  Many times in the past 7 years it has felt that we were close to the edge (emotionally and physically).  Many times it has felt like we were doing a “high-wire” act.

Life Lessons

No two situations are alike

In spite of the fact that Susan and Russell were both diagnosed with cardiomyopathy; their paths have been very different.  We have also had the privilege of hearing many patient stories and gotten to know other families who have had significant health issues.  It is remarkable how different people’s experiences are.  If someone ever talks to you with the “been there; done that” attitude I guarantee you they don’t know what they are talking about and I would wonder what they are trying to sell me.  Some of the most well thought out plans have a funny way of going sideways on you.  You have to be prepared for everything.  The motto of the caregiver should be Improvise – Adapt – Overcome.  I hope the US Marine Corps doesn't mind.

Control Issues

Early in our experience in health care, another parent explained to us words that ring so true for anyone who is dealing with complex medical issues.

 “If you have control issues; you probably won’t do well with this.”

You absolutely need to learn how to deal with your own control issues.  This is something that was made abundantly clear when we were in the process of waiting for Russell’s transplant.  A situation where you had absolutely no control.  Zero!  Does this mean you should sit back and let things happen?  Absolutely not.  There are some things you can control but you have to accept that there are some things you can’t.

Take care of yourself

I routinely get the opportunity to share my family’s patient stories.  If there is a chance to ask questions I usually get a question.  “But… how are you doing?”  This is an uncomfortable question because I enjoy sharing our story but it makes me uncomfortable to share the struggles I have had.  It feels very self-serving.  This isn’t about me.  This is about the people who have had to endure diminished health, numerous procedures, surgeries etc.  All I’ve done through all of this is be a spectator.    Through the years I have had to learn the hard lesson that I’ve been far more than “just” a spectator.  When you immerse yourself in "hospital world" and commit yourself to the care of a loved one you are right there and feel every up and down.  It is no wonder that we are now beginning to see studies that show the stress that caregivers are under and the emotional damage it does.  This is very real.  You need to find a way to decompress.  This has been particularly difficult for me because I have found that I am a medical “adrenaline junkie.”  I know that sounds very odd but I find that I function really well in a crisis.  Where I struggle is when things settle down and the gravity of the situation has a chance to sink in.  The quiet times are the hard part for me.  This is why I write and blog.  This is how I process everything that I have witnessed.  It’s just one thing I do but is probably one of the most effective things I do to manage my stress. 

Keep things Simple

Our life has become amazingly complex.  We have to balance medical appointments, school, work, etc  It is a lot to manage.  Both Susan and I have made a concerted effort to try to make things as simple as possible and enjoy the small things.  I have developed a Saturday morning tradition.  I sit in our sun room, surrounded by a view of our yard, cup of coffee in hand, and something to read.  There is something to be said about taking s a few moments and slowing down.  We have intentionally tried to reduce some of our commitments to allow us to catch our breathe.  I believe, through our experience, we have been taught to appreciate some of the small things in life.  Our society seem to be urging us to take on more and more…and I think that is unhealthy.  Keeping our commitments manageable and not loading up our schedules has served us very well as we have learned to relax and unwind.  This has been invaluable to help us prepare for times of crisis.

These are just a few thoughts from the trenches of being a caregiver.  I wondered how I would close this off, and then I realized.  My role is constant and will never end.  I will always be learning.  There will always be new experiences.  I will make mistakes, and hopefully learn from them.  In a couple of years it is likely that I could re-write this entire post and it could take me in a completely different direction.  This is just one chapter of many to come.

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! 

Presumed Consent and Organ Donation

There has been some significant discussion in the last couple of weeks surrounding the concept of Organ Donation and Presumed Consent.  To put this discussion into context we need to understand what presumed consent is, as it applies to organ donation is.

The presumed consent or opt-out system allows people to register their unwillingness to donate after death. If there is no registered opt-out the default or presumed position is that they wish to donate their organs.

Koffman & Singh 2011

Ann R Coll Surg Engl. 2011 May; 93(4): 268–270.

That’s it!  Instead of the present system where you or your loved ones have to declare your intent to donate organs the reverse occurs where it is assumed your consent is assumed unless you or your loved one’s indicate otherwise.

This subtle difference is significant due to the reality that the demand for donated organs far outweighs the availability of donor organs.  People die waiting for a donor organ.  Does presumed consent increase the number of the available organs.  Yes.  Studies indicate that in this type of system organ donation does increase.  One study is cited below, but it is important to note that other factors do effect the increase in donations.   

Results:

In the four best quality between country comparisons, presumed consent law or practice was associated with increased organ donation—increases of 25-30%, 21-26%, 

Conclusion:

 Presumed consent alone is unlikely to explain the variation in organ donation rates between countries. Legislation, availability of donors, organisation and infrastructure of the transplantation service, wealth and investment in health care, and public attitudes to and awareness of organ donation may all play a part, but their relative importance is unclear.

BMJ 2009;338:a3162

Those who know me and know my family’s story often bring up the subject of organ donation with me.  We have been through the process once (Russell) and the possibility does exist that Susan could go through this process as well.  This issue hits very close to home.  What some may not know is that we know the circumstances under which Russell’s donated heart became available.  We also know a family who donated their child’s organs several years ago.  When Russell was listed for transplant I had a lengthy discussion with this family about the process they went through.  It helped me understand the gravity of the situation and be able to sympathize with a family posed with the question “to donate or not to donate.”

Dispelling Myths

Organ Trolls do NOT exist

Some people believe that if you sign your donor card or indicate a willingness to donate your organs that there are ghouls who roam hospital corridors looking for willing donors to abscond with their organs.  I have talked to many First Responders and Emergency personnel who unequivocally state that they have never looked for an organ donor card or ever given a second thought to doing anything than saving someone’s life.  Many medical professionals do not even know how the process works.  They have no secret phone number they call when they think they may have a ”suitable candidate.”  All of this behind the scenes work is done by the appropriate organ donation organizations.  The idea that appropriate medical might be withheld from a person just to harvest their organs is absolute balderdash.  To summarize, if you are unfortunate enough to sustain a life threatening injury the medical staff has an ethical, legal, and moral duty to do everything in their power to save your life.  The consideration to donate organs is only discussed after the medical team has done everything in its power to save you and has exhausted every avenue.  This is when the discussion to donate organs can take place and NOT before.

Families cannot be cut out of the decision making process

Another theory I hear again and again is that if you declare your wish to donate your organs that the family does not need to be contacted or asked if they agree with the wish to donate.  This is not true.  If family is available and is competent to make a decision they will be asked for consent (even if a signed donor card exists).  The family can counter the wish to donate.  Even if there is a signed donor card the family can rescind the request and the medical staff will respect the decision of the family.  Families are always respected and consulted.  This is especially important when you consider presumed consent.  Even if legislation were passed to enact presumed consent.  It is still incumbent on the transplant team to discuss this with the donor family.  If at that point they refuse, then again the wishes of the family would be respected.  Presumed consent is not a license for Doctors to do what they want without consulting families.  Any law that would take away this right of donor families I would vehemently oppose.

From my statements above, some may ask, why presumed consent can make a difference.  If families can still refuse what difference does it make?  I think presumed consent changes the conversation.

It must be one of the most difficult tasks for anyone to go to a family that is in the midst of a crisis to ask them if they would consider organ donation.  Something I would never want to have to go through.  I think having presumed consent in place can take some psychological burden off of the family.  Being a family and to actively make the decision to sign paperwork to allow organs to be taken and used for organ donation must be a huge psychological burden.  If presumed consent is in place it places less burden on the family.  They can simply not oppose.  It may not seem like a big difference but given the magnitude of the decision I think it does have an impact.  Anything that makes that moment easier is huge.

Organ Donation is an amazing process.  It encompasses strong emotions for those who experience loss and those who receive a monumental gift.  What makes this issue even more difficult is when people do not have factual information on the topic.  This has become abundantly clear as I hear people call into radio talk shows.  I hope people get better informed on this issue.  What I have stated above merely scratches the surface of this issue.  I just thought it was good idea to share some of our experience; having been through the process.  It is a conversation worth having.

What No One Talks About at GKTW

Our week in Florida as part of Russell’s Wish was a truly amazing experience.  I don’t use those words lightly.  The trip far exceeded our expectations.  One of the reasons for the success of this trip was the stellar care and accommodations we received at Give Kids the World (GKTW).  A 79 acre resort that is dedicated to be a destination for Wish Kids.

If you go to their website you can learn lots of info about the resort and the founder Henri Landwirth.  His story is quite amazing in itself.  However, there are a few things you just have to experience and to some degree defy explanation as the experience is unique to each family that is lucky enough to stay there.  I wanted to share some of what we saw.

No one talks about “Fight Club”

All families who are at GKTW are sponsored by a “Wish” organization and as such there is a member of the family that has a life threatening or terminal illness.  That is an attention getter when you are having dinner in a room filled with families.  Each one of these Wish Kids has a “story.”  In the 7 days we were at GKTW; not once were we asked who the “wish kid” was or asked any of the circumstances that lead to coming to GKTW.  GKTW is not a support group.  The entire experience is about having a normal vacation that any normal family would take.  There are no medical services provided at the village; and that is completely intentional.  The fact that some of these kids require medications, or barrier free access is understood.  The village is completely setup for kids with special needs but it is subtle and most issues are just “taken care of” without any spoken word.  There is a “Sharps” container in the Villa.  The washroom for the kids is absolutely massive and easily accommodates a wheelchair with a wheelchair accessible shower.  When you look really close and begin to examine the design of the facilities you begin to see the brilliance behind them.  Everything is completely thought out to accommodate almost any need without advertising it.

“Real” Patient Centred Care

GKTW is the very definition of patient centred care.  That may sound strange as GKTW has no medical staff and no medical treatment ever takes place at the village.  What they do provide is a holiday where almost every aspect has been designed and planned with the wish kid and their families in mind.  Some of the tiniest details are completely taken care of.  Not only at the Village but also with the theme parks in the area.  An orientation is given to each family to explain how to navigate the parks and the village.  GKTW has relationships with all of the parks and as a Wish Family you get special access to the parks.  In effect, lineups at the theme parks just don’t apply to Wish Families.  If you wear your Wish Badge the red carpet is rolled out at the theme parks.  It’s an unreal experience. 

The true test of how effective GKTW at putting the needs of the Wish Kids first is the reaction from the kids.  Our kids felt at home immediately.  After a day of travelling to get to the Village we arrived about 8:00 in the evening and not having a proper supper.  Upon arrival, we were quickly taken to our Villa and immediately handed a take-out bag that had a hot meal ready to eat.  Meat, Potatoes, Vegatables…the whole nine yards.  We didn’t ask, the need was identified and was taken care of.  That is a great example of what our whole week was like.  

Going to the theme parks can be very stressful with all of the crowds and activities.  Every day as we returned “home” you could see the stress evaporate as our kids felt so comfortable at the village.  I think one of the things Russell enjoyed most was meal time where he had a great time with the volunteers.  We would just let him do his thing.  He would take off and get his own food which gave him a great sense of independence.  Because he would get a volunteer to help him out and carry his tray; he would usually zip through the line and he would also get to choose our table.  We would be stuck in our line and he would have to wait for us.  On one occasion, I was trying to find where he had gotten to and I had a hard time finding him.  When I looked a little closer I found him sitting at a table “holding court” where he was entertaining no less than three volunteers.  Our boy has personality…I’ll give him that.

Something is Missing

As Susan and I were relaxing by the pool on the first or second day (can’t remember) we began discussing the cost of what it takes to operate a facility like GKTW.  The facility is completely operated by donations.  A significant amount of corporate sponsors and private donors.  Absolutely, no-where in the facility is anything remotely resembling corporate sponsorship.  All of the facilities are named after former Wish Kids.  Places like Amberville or Matthew’s Playground.  No corporate logos.  The only indication of donors is on the walkways where there are bricks that are purchased through donations by families of children.  I asked about corporate sponsors and I got an interesting response.  There are very important corporate sponsors who support GKTW.  In addition to providing financial support the corporate sponsors also provide volunteer support.  There is a volunteer facility that is not accessible to the families where volunteers receive orientation and where corporate sponsors can showcase their involvement with GKTW to their (Corp sponsors) employees.  Nothing corporate is ever made visible to the Wish Families.

Don’t Over Think

GKTW has a lot of symbolic traditions.  One of the traditions is the “Wish Star”  Each Wish Kid is given a small star in which they get to write their name and that star is placed in the Castle of Wishes where that star will be placed and displayed forever.  There are approximately 143000 stars currently on display.  It’s a nice tradition.  The dangerous part of the tradition is to think about 143000 stars that coincides with 143000 stories that goes along with them.  Thinking about that can be overwhelming.  A vivid reminder of the amount of kids out there who have had been through or who are going through some very tumultuous times.  We are so fortunate to have had this experience.  An experience like no other.