Lupus and Caregiving: Managing the Decline of a Loved One

We got extra time. 

There's really no other way to say it.

Back on Sept 15th, we were told by hospice that my mom had 1 to 2 weeks to live. We should start preparing for her passing. We started going day by day, moment by moment. 

But a month later, October 15th, she was stable and stronger than ever. Turns out, she improved tremendously on the palliative care hospice was able to provide. We were thrilled. 

A week after that, October 22nd, she was showing signs that she was within days to a week of passing.  

Again, she rallied. As of her birthday on November 7th, she was doing well - well enough to enjoy a slice of her own birthday cake. 

But today, November 16th, is different. 

Today, we know she won't be rallying. We are close. Very close. And I'm just thankful for the extra two months we've had. 

What have I learned? I've learned not to worry too much about the timeframe. It seemed to be a moving target every time one would be declared, so I decided it wasn't an accurate gauge anyway. Instead, I tried to simply focus on and enjoy every visit I had. Most days, it worked. 

At the same time I was appreciating each visit, I tried to resist the urge to judge her progress every time I'd see her.  I tried not to get my hopes up after the good visits, and not dwell on the dismal outlook after the not-so-good ones. 

In fact, I found it most productive to zoom out, and assess her situation over the course of several days. In the beginning, we could look at a 7- 10 day period. How was she doing as a whole during that time? Improving, declining, or staying about the same? Once there was marked decline, I started looking at how she was doing every 5-7 days as a whole, and then every 3-5 days. As things progressed, we began to look day to day. 

And now, just moment by moment.

So as difficult as this is as a whole, the moments are manageable. So back we go. Moment by each beautiful moment with my beautiful, wonderful mom.  

Lord, let me be thankful for this moment. 


Denise Sullivan said…
Just reading this now. My heart goes out to you and your family. You love each other well. May God's love hold you all together, give you comfort and peace, and help you through the journey. To quote your Mom, on pg. 35 of your book, "If He takes you to it, He'll take you through it." You've shared a bit of your Mom with others through your writing. Thank you for that! Page 186, "Tho' much is taken, much abides." May these words on page 144 give you comfort now, "Precious Lord, take my hand -Lead me on, let me stand, I'm tired, I'm weak, I'm lone -Through the storm, through the night, Lead me on to the light -Take my hand precious Lord, lead me home." Praying for you all.
Sara Gorman said…
Oh, Denise. Thank you for this. ♥️ Having my book quoted back to me in a time of great need is about the most special thing in the whole world. And yes, my mom was wise all those years ago. Little did she know that, thanks to you, sharing those inspirational words with me then would one day help me cope with her passing now. ♥️♥️♥️ Thank you for taking the time to comment. I haven't been ready to write about her passing quite yet (it was Nov 21st), but thankfully you have just opened the floodgates and have started me on my journey of healing through the written word. Thank you from the bottom of my heart.

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