The information in this book is not intended to substitute for consultation with your physician or other health care provider. Matters regarding your health require medical advice.
Tips for the caregiver on communication
It is very important to recognize that both the patient and their caregivers are going through a life altering situation and many feelings and thoughts can come to the surface. Here are some tips on how to communicate with each other.
1. Think about your tone and approach and use “I” statements. For example,
a) You feel this: “I feel so frustrated that you are in pain.” OR “I am so sorry that you have to go through this with me.” b) T hink about what you want: “I would like you to feel more comfortable.”
c) Put this into a reasonable request: “Would you consider getting a second opinion at a pain clinic?” or “Would you consider us having a time every day or every week to do something fun with no mention of my disease?”
2. What are your expectations for the conversations? You can only bring up your concerns and offer suggestions for how things could change. The other person can either accept or reject your suggestions. If they stick to their position, you might have to modify your expectations, as difficult as that may be.
3. Think about backing off, once you’ve expressed your concerns. People often need a little space to take down some of their defences and more clearly consider a different point of view.
4. Think about the best way to bring up the subject, knowing the communication preferences of the other person. Sometimes it helps to tell the person in advance that you’d like to talk about a sensitive topic and ask when would be a good time. Or, maybe they prefer a direct approach. Would it help if you emailed them or wrote a letter instead? The written word seems less threatening.
5. I f you are afraid you’ll cry in front of the other person, reflect on this: Tears mean that you care. If you do cry, the person will be reminded that they matter deeply to you and that the situation is distressing right now. In some situations there can be resentment built up if the patient and caregiver are not allowed to cry.
6. Would it help to talk in the company of a third person? It might help to simply say: “You and I are having trouble talking about (the pain in your hip, the role of alternative medicine in your care…). Would you be willing to come with me to talk about it with (our rabbi, that social worker at the clinic…)?”
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7. Consider attending a support group for patient or caregivers. Many groups welcome caregivers, with or without the patient, and some groups are for caregivers only. You can just observe the group and see if the members bring up your topic, or you can ask the group how they’ve dealt with that issue. Group members can offer valuable “been-there-done-that” advice that is hard to find anywhere else.
8. Consider finding a counsellor who is familiar with the illness you are dealing with. This person may be able to “coach” you through a difficult topic and help you rehearse how to bring it up, if necessary.
9. R emember that you can always communicate with respect and kindness, even if the other person doesn’t treat you the same way.
10. E very person with a serious illness needs to have a folder or notebook or 3-ring binder to keep track of every part of treatment. Include a section for:
a) appointments-date and with whom, and a brief note of what the outcome was of each visit
b) test and x ray results-ask for copies
c) all medications and any changes to the doses with dates
d) referrals, consultations with other doctors with their reports
e) all the questions you want answered
You will find that your folder with all the above information will be crucial to your care. Take it to every appointment and show it to your nurse or social support worker.
11. Be honest with yourself. Don’t hide your fears, guilt or anger inside. No one wants to feel as if they are walking on eggshells when he or she is with someone they love. Often, both patient and caregiver have the same fears and feelings but each thinks they need to protect the other. It is a relief when you can say “I feel…”, “I think…”, or “I want…” or “I need…”, or “I am afraid…”, and then express yourself to the one you love.