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 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.
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.
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.
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.