Quote:
Originally Posted by Lamilu
One thing I notice is that people don't take this disease seriously. If you didn't know my Mom was sick, you maybe wouldn't notice anything different besides her being a bit slow. Have any of you dealt this feeling before? I think people expect to see something visual when someone is REALLY sick but I know that is not always the case.
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Lamilu,
How people handle a serious illness in the family depends so much on individual personalities and roles in the family. Some people step forward, some retreat, some want all the facts, and some don't want to hear any bad news. When a parent is ill, care often falls to the oldest child, the relative who lives the closest, or the most nurturing member of the family. The caregiving work is rarely shared equally and it can put a strain on everyone.
For those who don't want to face the severity of AA and MDS, closing your eyes to the problem is a lot easier when it's a disease you never heard of, when people avoid calling it cancer, and when you can attribute the outward signs like fatigue to "getting old". When you say aplastic anemia people may think of run-of-the-mill anemia from low iron and think it's not a big deal. The flipside is that patients probably don't want to look sick, even if helps convince people that they need support.
If you want family members to understand more about your mom's condition, my suggestion is to give them information about it that they can absorb at their own pace. You could email them status reports, or give them a copy of the literature from
AAMAC. I doubt it'll sit there unread. Still, remember that having them worry won't accomplish much. If you can use help from family members, I suggest asking them for something specific: to visit Mom, to do an errand, to be available to listen when you want to talk, or whatever you and your sister need in order to help your mom.