Living with and loving someone who has cancer might at times be even harder than being the person with the diagnosis. A former colleague, friend, and breast cancer champion expresses it this way:
One other thing that I realized through my journey is that those around us try to be good soldiers, the helpers, the people who will do everything they can for us. But, they are struggling too… in a very different way. No one can give them a journal of how to feel. No one can guide them on their journey of helplessness. They are the by-standers, looking in, hurting, and wanting to help, but they don’t know how. I found this in my husband, and I am always reminding people who experience the journey first hand, like we have, to also remember that the foot-soldiers need nurturing too. They almost have it harder, you know? They want to help but don’t know how. They are trying to help us fight the battle, but they can’t really help us fight the battle. That comes from within us. That comes from our decisions, our attitude, our gumption and drive to FIGHT. It’s almost innate, the will to survive. No one can appreciate that until they are living it, though they really do try to understand our journey.
Connie’s words are so true and are something that I struggle with daily. I know that my partner Gary, my family, and others around me want to help, want to be there for me. Who is there for them? We can be, friends and family can be, but often they get forgotten and sometimes that isn’t enough.
I remember a moment a few weeks ago when we were buying a refrigerator and looking at the warranty, there was one very expensive model that had a 25 year guarantee. Gary said, “We don’t really need a 25 year guarantee.” And then there were suddenly tears in his eyes. I could read his mind, the thought that we might not be together in 25 years and that he might have caused me pain by an inadvertent remark referencing mortality. Another time I was later getting home from an appointment than he expected and I had not turned on my cell phone. He tried calling and didn’t get a response. He worried and I was oblivious. Six months ago that would not have been a concern. Perhaps the strongest memory, however, is of him at my bedside in the hospital holding my hand with tears running down his cheeks.
How do we, the patient, and others provide support? How do the caregivers, partners, loved ones find the support they need as they deal with the fear, the sadness, and the anxiety of watching someone they are close to go through a process that is so filled with unknowns. How do we help them cope with not knowing how to make it better? What is it that they need and how are we to know?
For some it is enough to talk with family and friends, others keep their own counsel. Still others find that the common bond of a group for family members is what best meets their needs. The point is that it needs to be talked about, resources need to be explored and the best fit, based on the personality of the individual, needs to be the choice. Your local oncology unit, physician, social worker, or clergy can guide you to the place that best suits your needs.
To explore this, I called Gary in from the garage to ask him what he needed. In typical “male fashion,” he said “I don’t need support.” As he thought about it, he modified this to “Well, when I know what we are facing, then I might know what I’ll need.” We sat in silence for several moments and then he revealed the thought at the core, “My biggest fear is that I’ll become too dependent on you and then I’ll lose you.” It was the idea of being alone after being a part of a couple, a partnership. The fear of being alone stays with the one who is left behind; they face life without a partner.
What this shared insight led to was talking about distancing because of what might be in the future. We talked, both of us with tears in our eyes, about what our relationship can be and what we want it to be regardless of the time we have left. The fear of caring too much, of having that person as the center of your life and then facing loss, is so frightening. His fear is that doing things together will make it that much harder to do them alone in the future. But, should it mean that you limit the intimacy because there is the potential of it ending or should you explore the depths of the relationship with the belief that it will enrich you regardless of the future? From the bottom of my heart, I hope this is the later. I trust that talking about it, that holding each other close, sharing the fears and the rest of this journey will lead to more intimacy and not less. The greatest hope is that we will have the gift of a long life together, one where we can explore the adventures and the challenges that we are given in order to build a life that we will treasure and will enrich each of us.
Advice:
Most important, we all need support and we need to remind ourselves that it is not just the patient who is in pain. As my friend Connie (quoted above) says, those close to us rarely ask for what they need because we are the ones who are identified as “needy.” The person sitting on the sidelines wants to help but doesn’t know how; they too feel helpless and scared, but often need to be seen as the strong one. The challenge is to determine the individual needs of partners, children, parents, caregivers and friends. In some cases, the support might be each other, but that is very difficult, it may be your employer’s EAP (Employee Assistance Program), it may be through your faith community, it may be a formal support group or it may be a family member or a good friend. During different stages of the illness, the needs may change and other resources may need to be explored. The point is that regardless of whom you see, the needs of the caregiver must not be forgotten or underplayed. It hurts them too.
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