The caregiver is the invisible patient.
In many cases the caregiver has a more complex and stressful journey than the actual patient. I’ll get back to this shortly.
Caregivers often suffer burnout long before the caregiving role is complete.
Actually before I go to far I want to put a box around this to say that I can only truly speak on behalf of my cancer journey and what I have observed in my house, at the hospital, in support groups as well as what I’ve read. This is not a wide sweeping generalization of all caregivers. Although one can assume there is significant crossover.
I believe the caregiver needs more attention and support than they are presently given. They suffer much of the mental stress that the patient suffers. Often they have no control over the challenge but have all the angst that goes with the process, often enduring more than a patient who has little understanding of what transpires outside their hospital bed.
Sometimes stress comes from not being able to control your environment, and in my case I feel I have a semblance of understanding of what’s happening physically and mentally. Unfortunately the caregiver can only stand by your side and wonder where they can have an impact. It’s a tough line to walk.
But they do it. Day in and day out.
The challenge is that they are always seen as secondary to whatever support position they find themselves providing care.
Here are a few examples that I see all too often when I’m with Tracey:
When meeting with any doctor or nurse they only look at the patient. The caregiver might as well not even be in the room. And even worse they rely on a patient that could be confused based on surgery, drugs etc and still they don’t look at the incredible resource sitting next to the patient.
Jim how are you doing? Fair question but rarely any empathy is shown to caregiver in the form of the same question. All attention focused on patient, not the invisible patient standing at my side.
Jim you are an inspiration!! Yes, thank you for your kind words but the real inspiration rests with the caregiver that has managed our integrated lives so I can focus on me. Often putting their dreams, ambitions and adventures on hold in order to focus on the patient.
Whether you are a caregiver to someone dealing with Cancer, Parkinson’s, Cognitive decline, Old Age, MS or even a newborn or other natural life moments you will probably find that the task can seem under-appreciated. Maybe not from the person you are supporting, but certainly from others that really don’t understand the complexity of grief, caregiving and a lopsided relationship.
I’m not sure I have a solution for you other than to be aware of the dilemma many caregivers find themselves operating in.
I hope I’m not coming off too preachy but I am very keen on seeing more acknowledgment of those angels hidden in the background.
And on a personal note I know Tracey 100% embraces this role and wouldn’t have it any other way, and that’s what makes her the best partner a guy could ask for.
Hug a caregiver today.
PS if you are a caregiver and looking for an excellent resource check out caregiversalberta.ca