Occasionally, I review some of my blogs from yesteryear. The message below is extremely pertinent to our readers, especially for new caregivers that are struggling to find their “new normal.”. This blog, which originally appeared on 9/7/11, expresses the challenges of effectively communicating with your loved one soon after they learn they are going to be battling a catastrophic illness.
I hope you find it to be of value.
All the best,
Suddenly, your loved one’s set of circumstance has changed.
“I’m sorry to have to be the one to tell you this sir/ma’am, but it appears you have ________.”
It doesn’t matter what words are used to fill in the blank and complete the sentence. It could be cancer, Alzeimer’s, ALS, total paralysis, or any other life-altering terminology.
But that’s not all that may change. Everyone’s relationship with the once-healthy family member may also deviate off course. Some will attempt to be subtle about it, while others will be as obvious as wearing a Halloween mask on Christmas morning. Suddenly, everyone now feels like they are walking on eggshells when they are around the newly-diagnosed “sick person” (formerly known as, “their loved one”).
The patient returns home. Family members are informed. Coaching conversations commence among the relatives.
“Don’t say anything to upset her.” “Children, no yelling, screaming or playing near grandma.” “Be quiet around her.”
In essence, whether it’s said directly or indirectly, the message is clear. “Hey everybody, whenever you interact with [the patient], you will need to treat her differently than you had before.”
The reaction from the patient? It is not one of appreciation. More than likely, it is the direct opposite.
I admit it. I was among that population. In fact, I was likely one of the greatest offenders. In some cases, I still am, but that’s another story for another day.
My relationship and conversations with my wife changed. Where we previously had been very open and honest with each other, I decided it would be best to shelter her from anything negative so as not to upset her. If there were issues with the kids, I hid them from her. If I was having problems at work, I would not tell her about them. If she did something that bothered me, I kept it bottled up inside. If she wanted to go somewhere I detested, I never complained. I just did it, no matter how much I didn’t want to be there. In other words, she had to guess how I was feeling. More often than not, we were no longer on the same page.
Because I felt it was the right thing to do, I stopped communicating with her in the manner she was used to.
I was the martyr. I was the protector. I was her knight in shining armour.
I was wrong!
Immediately, my wife noticed that others were treating her differently, especially me…and it hurt her feelings. She shared with me many times that it upset her. It made her feel as if she was no longer a part of the family; that she was different. Why? Her mind didn’t have cancer. It was not in that part of her body. This, to me made sense. I shared that with my family members and it did help in how they acted around her.
And yet, I could not bring myself to change. I continued to believe she needed to be sheltered.
The lesson I learned, and am still working on improving to this day as we continue to deal with some of the residual damage that cancer did to her body, is to share my true feelings and not protect her by keeping my contrary thoughts bottled up.
So what is the lesson I can share? Communicate! Once the initial shock of the diagnosis subsides, ask your loved one if there is anything they would like to have done differently by you or others. Let them tell you rather than you make assumptions for them. Continue to communicate as you had prior to the diagnosis – unless the patient informs you to do otherwise.