No. 16, April 2001

(As some of you may remember, I was asked to speak at a fundraiser for breast cancer research. As part of my preparation for this talk, I asked for volunteers to answer a survey on being ill and/or being the primary caregiver for someone who was ill. Your feedback was extraordinary, and helped me prepare the speech I gave, reprinted below.)

Being sick is no fun. There, I said it. Being sick is just no fun. The vast majority of us are rather independent people and being sick; even if it is a really bad cold, make us realize we are not the superhuman we thought (hoped, pretended???) we could be.

As part of my research for this talk, I conducted a survey of people with chronic conditions as well as patient caregivers. I asked just five questions, but was overwhelmed by the responses. Some were up to four pages long. Single-spaced!! People truly had stories they wanted to share. I have included their responses in this talk.

Let's start with the things not to do:

"Just call if you need anything."
This was the number one pet peeve for both those who were sick as well as caregivers. Always offer something specific. People were most appreciative of prepared meals and planned visits. One respondent said that even the specific offer of a chocolate milkshake would always be accepted with a smile, but a "just call" offer would never be used.

"You think you have it bad, let me tell you about..."
Part of human nature is to form connections by sharing like experiences. However, when someone is ill, it is not the time or place for sharing. Being sick is a highly individualized experience. Respondents felt very strongly that when someone is sick, it is not the time to share. Quotes included:

• "Don't constantly tell me the latest treatment you saw on TV or on the web."
• "Don't judge me, how I look is not how I feel. When you are chronically ill and trying very hard to live a normal life, people have a tendency to forget you are sick!!"
• "Don't tell me about the sagas you have experienced with your own children which are so much worse, as if I should not be worried about my child."
• "Though your thoughts and efforts are appreciated, it is my crisis, not yours."
• "Don't share your anxieties about the situation to make the illness about you and not the sick person."
• "Don't play the 'I can top this!' game."

If those are things not to do, here are the things to do:

"The Three C's – Cooking, Cleaning, Caring"
Below are the most frequently mentioned actions that were helpful during times of illness.

• Bring meals (include warming instructions) ** beware of dietary restrictions
• Stock the freezer
• Clean the house (or pitch in a hire a service)
• Look around a see what needs to be done
• Walk the dog
• Put in a load of laundry
• Pick up dry cleaning
• Carpool the kids
• Transportation to procedures (arrive early)
• Grocery shop
• Gas up the car (pick up car so it won't be towed)

"Visit, Visit, Visit"
When you are sick, days can be long. Short visits are actually preferred, so do call first and then stop by to say hello.

• Call in advance to make sure it is a good time
• Mid-mornings were the big winner here
• Wash hands as soon as you arrive (whether in someone's home or in the hospital)
• Unless otherwise indicated, keep the visit short as to not tire out the patient
• Bring magazines or books
• Bring conversation starters (the patient has not been doing much!!)
• Keep the conversation light and upbeat
• Listen, listen, listen
• Even better, if the patient is able, take them out

"Call in the Troops"
When someone is ill, having a caring community can make all the difference. There were many responses about meals being brought, prayers said and transportation arranged. But one story really brought tears to my eyes.

...When her mother had a stroke, this woman had moved to her mother's community in order to provide care. During that time, the mother's church arranged meals on a monthly basis. Let me say that again, they arranged meals by the month, so that this woman did not have to worry about cooking. This went on for a number of months. They also wanted to make sure that this woman, as a primary caregiver, did not burn out. So they asked her to join the church choir AND arranged for someone to sit with the mother while the woman was out of the house for a few short hours each week. We should all be so lucky as to be part of such a community...

"Keep in Touch"
Many respondents said that once the crisis had passed, people told them "we were thinking of you." But the respondents felt they would have never known since people had cut off all contact. Be in touch so that the person does know you are thinking of them. Patients liked to be invited out (dinner, movie, parties, special occasions) even if they never went. They liked to be asked. You can keep in touch by:

• Send cards and notes and e-mails
• Send flowers (something LIVE)
• Send fruit baskets
• Call, but do not expect a call back

"Status Letter"
One patient sent out a status letter every three months to let those near and far know how she was doing. This letter helped her to keep in touch and served as a reminder for those who truly cared about her to keep up the contact.

"Always Ask"
Yes, you should ask "How are you?" in a sympathetic tone. Then take your cues from the patient's answer as to whether they want to talk about their condition or not. Many patients commented that sometimes they found it easier to share how they were feeling (or their fears about their illness) with people outside their immediate circle. Many patients tried to keep a positive attitude around close friends and family and truly appreciated being able to share some of the scarier feelings with others.

Often, when someone is ill we are just not sure what to do. We do not want to over step our bounds or invade the patient's privacy. The bottom line is, do something. Just the fact that you made an effort lets someone who is ill know that you care.

Q: Dear Mannersmith ~ I had just returned home from a hospital stay when a friend came by to visit. After about 20 minutes I said that I really should take a nap, but she just kept on talking about the latest trauma in her life. I felt like she really needed someone to listen and kept nodding my head even though I was exhausted. After over an hour had passed, it was dinnertime and I thought this would be a good way to have her go. But she ended up inviting herself to stay. I was so tired that I was not thinking straight and ended up having to make dinner for her before she finally left (she stayed for a three hour visit!). Hopefully I will not be that ill again, but what should I have done to politely get her to leave?

A: You started on the right path when you said you should be taking nap. But what you should have done next was to get up, walk her to the door and then get into your bed. Short of physically moving her to the door, you could excuse yourself, tell her to make herself comfortable, go into your room, shut the door and take a nap. You could have also made your doctor the heavy and said that your doctor told you an afternoon nap was a must. Good luck.

Q: Dear Mannersmith ~ As the primary caregiver for my dad, I am constantly being told "call me if I can help." I am overwhelmed by the things that need to be done, but do not want to burden anyone. Am I allowed to assign tasks?

A: Well-wishers would be most relieved if you would assign tasks. When you have a moment, jot down a list of discrete tasks so that the next time someone calls and offers you can give them a choice. "Yes, it would be wonderful if you could help. Would you be able to pick up some groceries on Wednesday or drop off the dog at the vet on Thursday?" If you are not comfortable asking, enlist the help of a friend or clergy to act as the organizer. People really do care and truly want to help, but often do not know how to offer properly or where to begin. Any hints you can give them would help both you and them.

Q: Dear Mannersmith ~ My illness has left me unable to work and therefore on a very tight budget. I can go out, but the cost, even $10 for pizza, is prohibitive for me. I do not want to be a burden on my friends, but would love to go out if it is their treat. What do you suggest?

A: Honesty is the best policy. When your friends ask you out, tell them you would love to, but that being ill has made your budget very tight. True friends will understand and maybe even offer to treat now and again. Be sure to thank them properly when they do!

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