Caregivers: About Visitors
Caregivers: About Visitors
When someone hears that your loved one has a serious illness they ask if there is anything they can do. This of course is the right thing to say and some people say it for that precise reason. Others actually mean it and some will even expect an answer.I found while caretaking Margaret, my wife of 20+ years, who was unexpectedly diagnosed with Stage Four Pancreatic Cancer, that only a few people will ask if they can visit. It is a generous and genuine request that can come with built-in challenges for all concerned.
My wife, like many others who face a life threatening illness, needed contact with those they love AND she needed downtime and rest. In the short three months we had together once we learned of the cancer, we found that socialization and the connection to a life that is as regular as possible were important. But they had to be balanced with rest so the body could fight the illness.
The night of Margaret’s diagnosis, we talked on the phones with friends and family about what we had learned. The next day people began calling to come by. At first, the visits were welcomed and Margaret was cheered by the company. Inevitably, after they left, she would remark that it was certainly nice that they took the time to come by. She was behaving as she always did, she would entertain people and present her social side as soon as someone stepped into the room. There was never any hint that she felt badly or that she was tired. As long as people went to the trouble to visit she believed she needed to do her best to welcome them.
As her caregiver I did my best to explain to these guests how Margaret was feeling and what her condition was like. The reason was simple: if I could answer some of their questions, then Margaret wouldn’t have to. Also, when dealing with a disease as insidious as pancreatic cancer, there is inherent discomfort with how people ask questions, and in turn, how those questions are answered.
Generally people wanted to catch up with Margaret, but sometimes there was an awkward quality to the conversation. Curious about her condition, they wouldn’t pry and yet they wanted her to know they cared. On one hand there was was genuine human caring and curiosity and a need to comfort a friend. On the other hand was a nagging feeling of being pushy.
In some cases, those who were uncertain would tell Margaret about their lives, rather than ask about hers. On some levels this may have struck Margaret as odd, but she never complained about the one sided nature of the visit.
As her caregiver, I struggled to a degree with visitors. I wanted Margaret to stay in touch and to be as connected as she possibly could to her life as she had known it. At the same time, I was also very defensive of her condition and wanted her to rest as much as possible. I, too, was looking for that elusive line between what would make her happy and what might tax her body.
I learned that it is important to set up clear ground rules for visits. Yes, let visitors know they are welcome to call and that their company and energy are valued. But it was essential to be honest. Some days a short phone conversation would be better. And, if your loved one is uncomfortable talking about something, clue her guests in.
Because we live in an information age, I found that that using email and online communication tools such as Caringbridge.com allowed me to keep everyone updated.
Staying in touch is important for all concerned. So, it’s important to find what will work best for you and your loved ones.