Caregiver Survival 101
- written by a caregiver with 6 years post transplant experience
In the position of caregiver or friend to a loved a one who suffers from a chronic condition, finding the right words can be hard and often times we can end up frustrating or offending those we care about the most when our intentions are best.
My name is Annabella. I am forty nine. I’m a cancer survivor.
I will never forget the day when I was told my sister-in-law was diagnosed with stage 3 breast cancer. And, I will never forget the day I was told my mother was diagnosed with early signs of dementia. After doing a little research, and finding out that someone diagnosed with dementia would have significant memory challenges as well as other cognitive difficulties, and that these challenges will get in the way of daily living I knew that the journey our family would go through would be long and mentally / physically taxing. In both cases I wondered what the level of non-clinical or medical support would look like for our family. What kind of support groups would be available and where could our family go on line for a deeper understanding of what was on the horizon. Even conditions which effect millions of people around the word like breast cancer, diabetes and cardiovascular disease seem to be lacking in the area of online support for patients and caregivers, yet the numbers of newly diagnosed patients each year keeps growing at a rapid rate. The amount of clinical information what was available to us was plentiful, however, much of that information required a PhD out understand! Patient support groups designed to provide an understanding of how to maintain a reasonable standard of living to the newly diagnosed patients and comfort / support for caregivers provide tremendous value. Believe me I when I tell you - I know!
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