Cancer, Radiation, and all the rest - a side step in the game of life. Just like lupus.

Well, we made it. Three months of caregiving for my dad (diagnosed with terminal brain cancer) and my mom (who suffers the effects of a major stroke), and all parties have emerged stronger and closer than ever. Some days, that really didn't seem possible!

To catch you up, when my dad was diagnosed in July of this year, my sister and I made the immediate decision to move my parents from Indiana to Virginia to live with our families. The plan is to host our parents a few months at a time, and then have them switch to the other house. I hosted the first shift from July 15th to Oct 15th - and I think I've just now come up for air.

With their first stay behind us,  I finally had a chance to glance over the notes I kept while they were with us. There were so many stepping stones encountered along the way, all of which my dad gracefully embraced, and most of which I'd faced during the early years of my own lupus journey. While I had every intention of posting along the way, ask any caregiver what they do in their spare time, and you'll understand why my real-time posts totaled exactly zero!

First, let me say that it was a privilege to care for my dad every day. I have more respect and admiration for him than I ever have. He is just as enjoyable, wise and funny as always, but after 6 weeks of radiation to the brain, his fragility is ever-present. That vulnerability allowed for a special bond to form, and I am thankful that I have been able to share that with my dad. I didn't know it was possible, but my heart grew tremendously in the last three months. 

So what lessons jumped out during our time together? With daily bathing, toileting, dressing, meal prep, walking assistance, and 24/7 supervision, we certainly had plenty of opportunities! (As an aside, thankfully all medical professionals agreed upon discharge from the hospital back in August that if my dad stayed in bed at night, and used bedside urinals - he could sleep next to my mom unattended until I came to get him in the a.m. And everyone was doubly thankful that he made much physical progress since that time -- but I'll save that for another post!) 

One of the first takeaways from my time with my parents is a simple one - the concept that a sudden onset of illness - like my diagnosis of lupus, or my dad's out-of-nowhere cancer diagnosis - is not a step back, but rather a side step on life's long and winding journey.  There was never a promise that life would be straight, nor particularly easy. And the why's and how's sometimes are never properly answered. But I believe there is a  reason life takes the turns it does. And there is a purpose, difficult to discern as it may be. 

But I tell you this - my personal experience with a chronic illness, one that has given me extensive knowledge and familiarity with chronic sickness, life-altering symptoms, unexpected side-effects, emotional adjustment, physical accommodations, limitations, boundaries, medicines, doctors, pharmacies, health insurance, new normals, micro goals, and lifestyle rebuilding, seems pretty darn relevant, meaningful, and necessary right about now.

I have never questioned why I have lupus. Through my book, my blog, and my pillbag business,  I have found many, many reasons. 

But with my dad's cancer diagnosis, and need for my assistance and round-the-clock care, I have just found one more. 

As for my dad (and mom), the purpose of life's latest twist is probably still revealing itself, but this I know: my mom has wanted (and needed) to move to Virginia to be close to family for awhile. But because of my dad's (previously) robust health, his self sufficiency, and love for his home state of Indiana, I don't know when or how it would have come to pass. We were all fine with that, because my dad was, well, Dad. We talked on the phone most days of the week, and loved each other dearly.

But now that my parents are here - surrounded by grandchildren, lending advice and wisdom to all, helping around the house, adding a sense of calm, as well as a sense of preciousness to our lives, it doesn't feel like we could have waited one more moment for them to have moved here. My children  have benefited, my husband and I have grown, and I am more appreciative of my parents than ever. 

I am truly grateful for this opportunity to give back. And, now, with my dad within arm's reach, I am ready for whatever lies ahead. I know he has my back. And I have his. 


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