My most recent diagnosis opened my eyes to the need for resources offering guidance and support for patients who are also caregivers. Shockingly, Googling various combinations of search words yielded only one hit: a blog post by a cancer patient (i.e., not an academic article). So I wrote a piece, When Patients are Also Caregivers, in which I share with healthcare professionals my experience and lessons learned.
For this post, I excerpted and edited for brevity the first half of the article.
Soon after my youngest graduated college, my then 85-year-old mother developed dementia. As her sole caregiver, I managed my chronic health conditions and her gradual decline. 11 years later, I developed aplastic anemia. Acutely distressed about my ability to continue caring for her, I leaned on lessons learned that had helped me through years of doing cancer-and-kids.
Prioritize your well-being.
Take care of the what-ifs.
Fortunately, I knew my distress would abate once I finished preparing a document summarizing every detail about my mother’s care, just as my distress had quieted down after I had taken care of the what-ifs for my children.
Except it didn't.
Two sessions of professional counseling were all I needed to understand and minmize my distress thereafter, as discussed in: When Patients are Also Caregivers.
As our population ages, increasing numbers of patients face the challenges of caregiving while ill. For patients who are also caregivers, the pursuit of healthy survivorship includes asking for guidance and support. That way, you can optimize your ability to cope AND the wellbeing of the innocent bystanders under your care.
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