November 7, 2000
Antony William, Caregiver to Carol Lindop
In Memorium - July 5, 2002
How do you cope with what you read, but don't share? How do caregivers deal with family members who run or hide
When our mothers, sisters, aunts, wives, cousins, fathers, brothers, etc are diagnosed with IBC, there are perhaps two clear paths - one is get involved and walk beside the person - the other is to close our eyes and ears - not want to deal with the reality. Please: make the choice to "walk the walk and talk the talk"
- - Become as informed as much as possible
- Use the info to probe and challenge, the doctors. You will get better and more informed responses.
- Be the prompter at these meetings - but try to remain objective.
- Focus on what is said - and sometimes, not said. Make sure things are not glossed over. I have found that the knowledge gained from the internet and support groups enable us to present ourselves as informed patients and we demand a more informed response.
- Some doctors do not like their pat answers to be questioned. Tough!
- Help the patient understand. Help interpret what the doctors are saying. Pass on the information as and when it is asked about - or when another phase of treatment is coming.
- Do not try to play God with information, but be very sensitive, as well as being honest about what you do or do not know. ( Q: Will radiation be painful? -A: No not intially - but as treatment proceeds, sometimes you will get burns similar to bad sun-burns - some may become painful - even open and weep.)
- Try to be factual but stay away from graphic descriptions. We will deal with that if and when we get there.
- Deal with the Family,
- - Listen and help deal with family relationships.
- What is said - how and when. It is sometimes difficult for the patient to see or anticipate the impact of what's happening to them on their family - and vice versa.
- To manage what I read but do not share is one of the hardest things. Read - think - reflect - cry - censor. Tuck the information away for a rainy if not stormy day!. Be careful about leaving things out to be inadvertently read ... including websites ... things that may be upsetting. It is not that you want to censor, but some information creates more heat than light.
But, sometimes when the patient is feeling down about the situation, it is hard not to say - You don't know what I'm living with - you do not know what I know
As for family members who run or hide, try to meet face to face meet face to face with the person, and discuss the importance of their relationship with the patient - and then open up to their concerns or fears. Be ready for a lack of understanding of what was/is/may be going on - what they can or cannot say - how they should behave - what can they ask about - how to react to the patient. Some people find it too difficult to face the prospect of finite mortality - you don't win them all. I always stress how good it will be for the patient, and how much everyone's contribution will be appreciated.
Good luck to us all