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.
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