One of the most challenging parts of dealing with a major illness is that friends and acquaintances sometimes feel awkward around the patient. People feel bad because the patient is so sick and they are often afraid of saying or doing the wrong thing. This nervousness can sometimes lead to conversations with long awkward silences or prompt people to ask odd or inappropriate questions or abruptly leave. No one wants this to happen so giving visitors a bit of guidance can go a long way towards making everyone feel more comfortable.
When friends wanted to visit my husband or help out by staying with him when I couldn't be there, I found it was helpful to prepare them in advance. At first it might seem strange to tell people how to behave but knowing what to expect and what to say can create a real sense of ease for everyone. The day before a friend would visit or stay with my husband I would send them an email with details about his condition. I would warn them about certain symptoms or behaviors he was experiencing that might surprise them. I asked them to avoid certain topics or not to ask certain questions during conversation. I also gave them specific instructions for reminding him to take medications or what things might make him feel more comfortable. Over time this list of instructions became longer and more detailed. I found that I would use the same text every time and just tweak it slightly as things changed. When I began working with clients, I created a form to fill out to help patients create their own "User Manual" to give to visitors and guest caretakers.
Here is a sample "user manual message" created for a fictitious patient that could be sent to a visitor prior to their stay with the patient.
Thank you so much for coming over tomorrow afternoon to stay with Charlie while I'm out running errands. He's looking forward to your visit and it will be a huge help for me to have some time to run errands.
I wanted to let you know what to expect since Charlie's condition has changed recently. Lately he has been experiencing severe hiccups and the medications he takes to combat them cause him to be very forgetful. If you are chatting with him just ignore the hiccups as much as possible. If you pause the conversation while he hiccups he gets uncomfortable. Also if he forgets a name or word please just let it pass, he finds the forgetfulness embarrassing.
I also wanted to warn you that sometimes his hiccups become very severe. Every once in a while they come in quick succession and it sounds like he can't breathe. The first few times it happened I was really scared because it sounded like he was choking and couldn't breathe. If this happens don't be alarmed. Just wait a few seconds and he will take a deep breath and be fine. It really isn't a big deal but when it happens the first time you might be alarmed and I just wanted you to know about it.
One thing I have noticed is he really enjoys hearing about what is going on at the office and everyday news and gossip. He prefers not to answer lots of questions about his illness, the treatments so far, and when it will be over. He finds it especially upsetting when people ask about his recent surgery and the recovery period after. So try to focus conversation on news from the office or news about every day life.
He is due to take a Baclofen pill at 2:00. The pills are in the pillbox and his phone is set with an alarm to remind him when it is due. When the alarm goes off make sure he remembers to take the pill.
Finally if he tires of conversation you may want to offer to read to him. He sometimes finds it difficult to read because the medications make his eyes fatigue. The current book he is reading is on the night stand on the left side of the bed.
Thanks again for your help and support.
Warning the visitor about things to expect and what to avoid can make them feel at ease with the visit. It can help them avoid well intended awkward interactions or conversations. Usually in life we don't get a clear guideline for behavior before a social situation so this may seem odd at first. However in my experience it makes things more comfortable for everyone involved.