Taking care of ourselves requires routines and adaptability. When the day doesn’t go as planned, we need to readjust and carry on. Getting our treatments, meds, meals, exercise and rest is paramount. Recently though, I’ve been tested on all these arenas. My beautiful mother is now 82 and her health is rapidly declining. The need for hospice care has arrived. Since most of us CFers have to advocate for ourselves and are good problem solvers, we may be the medical point person when our parents age, since we know the system best of non-CF family members. My medical background also makes me the obvious choice for my family.
Two weeks ago, my mom fell and in a flash her mobility became nil and her Alzheimer’s dementia advanced to the point where she now will need hospice care. This has turned my routines upside down – exercise is a quick walk from the parking lot to her room. Treatments are done in the car on the way to the hospital without any percussion. I forget my noon meds until late at night when their effect may not be optimal or forget altogether. Sadness has put the kibosh on appetite and sleep. Rest is elusive.
For me, the hardest thing to do is let someone else do the medical heavy lifting when I feel that I may be best suited and should be there. I know I need to take care of myself. I know I should try to go back to sleep, go rest, eat more, eat healthier when I do, and spend the usual time on treatments. Luckily I seemed to have stayed above water so far, but I fear that it will come crashing down on me especially as her rapid decline continues.
But I must allow and trust that one of my siblings (thankfully I have a few!) can step up and help my 86 year old dad deal with this while making sure that my mom is receiving the best care. By at least partially relinquishing my involvement to a sibling, I can have a bit more time to maintain health so that I can be effective from the sidelines.