Monitoring symptoms
- Keep a "diary" of your care recipient's symptoms (mouth sores, nausea, fatigue, pain, etc.), and take 10 minutes at the end of each day to record how the care recipient was during the day. Note:
- Keeping a diary or journal helps you:
o how bad symptoms are at different times in the day.
o how long symptoms last.
o when symptoms get worse or better.
o what helps symptoms improve and what makes symptoms worse.
o how symptoms interfere with your care recipient's ability to do things for himself and take part in social or leisure activities.
o remain aware of symptoms.
o figure out what makes symptoms better or worse.
o helps you to talk to doctors or nurses (HCP) effectively about symptoms.
Interpreting Symptoms
- Making decisions about how to manage symptoms (the next step) depends on your interpretation of the situation.
- You will be making decisions to intervene with symptoms based on:
- Talk with your patient and decide together when symptoms are bad enough to need intervention. For example:
- Talk to your patients doctor or nurse to determine the "danger signs" for each symptom. Ask the doctor or nurse:
o How much do the symptoms affect patients quality of life?
o Does he want to continue with therapy?
o When do symptoms present an immediate danger to your patients health?
o when symptoms are at a certain severity (for example, a 5 on a scale of 0 to 10).
o when symptoms interfere with ability to function (for example, when he is unable to dress himself due to pain).
o what key signals should prompt you to begin to intervene at home.
o make a list of strategies to attempt at home.
o what key signals are "emergencies" and mean that you should call the doctor or nurse right away.
o Write these danger signs down and keep the list somewhere handy.
Making decisions
- Making decisions should be a collaborative effort between you, the patient, and your doctor or nurse. Making decisions should also be based on:
- Problem solve how you are going to monitor and interpret symptoms.
o information you have been keeping about patients symptoms.
o information from your doctor or nurse about the most effective way to manage each symptom.
o Identify key strategies to manage each symptom.
o Write the advantages and disadvantages to each strategy.
o Try the strategies.
o Record those strategies that worked well and those that did not work.
o Revise the plan if the strategies do not work.
Taking action
- Taking action to manage patients symptoms can be a scary thing.
- Don't be afraid to try new or different strategies.
- Ask your nurse about the possible side effects of strategies (such as constipation from some pain pills) so that you will feel more confident in trying different management techniques.
Making adjustments
- Review your diary or journal to see how different symptom management strategies have either improved symptoms or made them worse.
- Don't forget to consider how techniques aimed at improving one symptom affect other symptoms (for example, giving care recipient pain medication may increase his level of fatigue).
- Use a systematic approach to symptom management.
- If a technique doesn't seem to be working, don't completely disregard it!
- They may need to:
- Be in close contact with your doctor or nurse as you manage the patients symptoms.
- Write down questions to ask you doctor or nurse as you make adjustments.
- Don't be afraid to call and troubleshoot with doctors or nurses when you feel symptoms are not managed.
o change the dose
o change the frequency
o try a different route
o try a different combination of drugs
Accessing resources
- When you're feeling overwhelmed, it can be difficult to know where to turn. There are several places you can go when you need information:
- your doctor or nurse
- support groups
- the internet
- your library
- your book store
- Be sure to discuss symptom management strategies that you've heard of through other sources with your doctor or nurse before you try them, especially if it's a strategy you've seen on the internet or in a book. Sometimes strategies can be dangerous if other conditions that exist (such as underlying heart problems).
Providing Direct care
- Providing direct care (such as giving injections and oxygen) can also be scary. Schedule a time with your doctor or nurse.
- After the initial session, be sure to call or visit your doctor or nurse to ask for refreshers when:
o Sit down and talk about the direct (hands-on) care you'll be responsible for.
o Watch the doctor or nurse perform the task.
o perform the task in front of the doctor or nurse.
o ask for suggestions.
o you're feeling unsure of yourself.
o when condition changes.
Working with the patient
- You and the patient are a team and partners in care. You need his input about how symptoms are affecting him/her and he/she needs your help to manage his symptoms. There are several tips that can help the two of you communicate:
- Be open and honest about your feelings with the patient about symptom management.
- Try to describe what you think is causing the patient symptoms and listen to what he believes are causing the symptoms (they may not be the same).
- Ask for ideas to help you manage his symptoms.
- Ask daily how his/her symptoms are affecting him.
- Tell how his/her symptoms are affecting you.
- Ask daily about his/her emotions.
- Tell about his/her emotions.
- Ask patient what you can do to help.
Negotiating the health care system for care needs
- Figuring out how to talk to doctors or nurses about symptom management can be difficult. There are several tips that can help you communicate:
- What you should tell your doctor or nurse?
- What you should know about your illness and treatment?
o Buy a notebook and write down all of the questions that you want to ask.
o Bring a friend or family members with you to your appointments to take notes and to help you ask questions.
o Take notes during your appointment or ask permission to tape record your visit so that you won't forget things that you talked about.
o Speak frankly with your doctor or nurse.
o Tell them about the problems you have been having:
§ Physical problems such as pain or fatigue
§ Emotional problems, such as depression, anxiety, or anger
§ Financial problems
§ Inability to do daily activities
§ Need for assistance
o What treatment involves
o How long will treatment last
o What side effects should be expected
o When you should call
o Risks and benefits of treatment
o Other treatment options
o Where to get more information
Family members and patients in partnership with doctors and nurses can do much for helping patients and their family members make the symptom experience better.
