Agnes Jones (not her real name) walked into the Caregiver Center looking as elegant as ever. Still a newlywed, she accompanied her husband to the hospital for some tests. His treatment for inoperable cancer just wasn’t working.
We had met 18 months ago, when the diagnosis was made. This couple was in the midst of planning their dream wedding when Agnes’ fiancé began to feel sick. Their love and bond strengthened as they faced their now uncertain future together.
Now, Mrs. Jones told me that she had spoken to one of her husband’s co-workers, only to find out that in recent weeks her spouse had fallen a number of times. This was new information to her. Her distress was apparent, and she said she felt “angry and hurt.”
“How can I let him know that I know he’s been falling, and we have to tell the doctors, and he has to tell me?” I replied, “Just like that. You’re in this together, and it’s that simple.”
Or is it?
“You know, it was just yesterday that he told me those exact words — we’re in this together. And now this?”
She was describing a common dilemma and unfortunate theme, one that occurs frequently between the caregiver and the person they love and are caring for, who’s not sharing certain information.
This scenario is one we frequently see played out. We encourage the caregiver to open the lid themselves on any “can of worms” that might exist with their loved one. Supporting open and honest dialogue is a key ingredient that cannot be emphasized enough.
Keeping information to oneself is often due to fear. The fear of conveying possibly frightening new symptoms or painful emotions can deter people from sharing intimate and important information, resulting in isolation and despair. The family caregiver, along with care recipient, has a responsibility not only to one another, but to their professional care team.
It is vital to openly discuss the ground rules for this caregiver/recipient relationship. Have the conversation. It could be that simple, although it may seem overwhelming, and how to start might impede the entire process. The “how are we going to do this?” conversation can and should be held in the early days of a new diagnosis, or when the need for caregiving seems evident. Of course, it’s a dynamic process, not a cut and dry one-time talk.
It is equally essential to have this type of conversation with your medical team. Who will tell what to whom? How are we to communicate as a team, and who are the players? This step, at the beginning, can go a long way in avoiding missteps as the journey proceeds.
When serious or chronic illness is present, the unit of care is the family. Often, caregivers underestimate just how significant their role is in this equation. The caregiver is an inextricable part in the fabric of care. Theirs is a voice that must be heard — and taken very seriously.
While the medical team is primarily taking care of the “designated patient,” the best medical model of care includes the entire family system. The emotional, financial and spiritual impact of illness and caregiving is well-known. There are many supportive services available, but unfortunately, the professional care team is often operating in the dark. Without the open circuit of communication, these services are often unexplored, and possible relief is not made available.
If you’re caring for someone with a serious, chronic or life-limiting/threatening illness, you are already very brave and courageous — although you might not feel that way much of the time.
Recognize this about yourself, and yes, give yourself a pat on the back — and let others do the same. Now is the time to let people know what is happening in your life. Veils of secrecy aren’t often very helpful during stressful times. Of course, individual privacy is to be protected and respected. But there’s a difference between privacy and stoicism.
Aches and pains, lack of sleep, depression ( common in caregivers and people with medical illness), worries about the future, finances — these are some of the issues many caregivers are reluctant to give voice to. This can lead to isolation from others, including the medical care team and those in your personal life. Silent distress can lead to feeling alone on an island of despair. Hopefully, having the ability to find a simple opening in communication can provide great relief.
I was recently talking about the concept behind the undergarment known as SPANX — a modern version of a very supportive girdle, for those “problem areas.” Theoretically, I understood the concept, but where, I asked, does the actual problem area go? It’s got to come out somewhere.
I think of this silence among caregivers and care recipients as analogous to SPANX. Think of what it feels like to remove something that is so tight you can barely breathe.
I’ve witnessed the relief when the silence is ended. When Mrs. Jones reveals to her husband that she knows he’s been falling. The relief when Mr. Jones finally tells his wife’s doctor that she’s been experiencing more pain, and up at night unable to sleep. Mr. and Mrs. Jones held hands sitting with the doctor after Mr. Jones came clean. It’s not a confession — rather, an invite to have reality validated.
The result can be profound. The often forgotten promise that “we’re in this together” can in fact be the time to renew that powerful vow.
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Managing the Caregiver and Patient Relationship originally appeared on usnews.com
