Day by Day

Since Thanksgiving, we've noticed a few changes in Mom. They're mostly neurologically related, such as her left eye looks slightly weaker than the right, her double vision has returned, she has to lift her right arm with her left in order to extend that arm fully, and her right foot seems to move involuntarily while she is in bed. Her pain symptoms have morphed a bit as well, but remain relatively well controlled having increased her pain patch and added ibuprofen around the clock. The swelling in her legs is not concerning, and certainly improves when she spends less time sitting up in the chair. It is a lot of little things that we seem to chase, but put them all together, and the big picture reveals that overall things may be heading in a different direction.

It's hard to believe that Mom has been at McLean for a month now. She built up a lot of strength and energy over that month, and spent a lot of that energy and time crossing things off her list while she was feeling well. Although a bit less energetic this past week, she is still plugging away on a few projects that mean a lot to her, and despite some of her staff recommending she slow down a bit, she is really happy to be accomplishing so much.

And so we come back to balance, because despite the fact that we see physiologic evidence of change which could be considered decline, Mom is purely not ready to go there. Nor should she be. I've had the opportunity to sit in on a few discussions with her nurse, counselor, and doctor over the past two days, and despite these changes, she's made it clear she wants to continue living her life as best she can. We acknowledge, but we don't dwell. We breathe it in, then we move on.

This hasn't been as easy for me. I'll admit that at times I get fixated on my mother's physical health. I analyze and I worry. I get nervous that her continuing to push, fight, and believe means that she is in denial of reality. Sure enough though, mother knows best. She isn't in denial of the changes that are happening, she is just choosing not to be defeated.

We did an exercise with her counselor, where she asked Mom, "if tomorrow were your last day on earth, how would you want to spend it," and Mom said, "with my girls." Of course "tomorrow" was not her last day, because "tomorrow" is today, but you get the point. She is trying to live as best she can, without dwelling, and we are trying to soak up as much quality time with our mother as we can, without dwelling. Welcome balance.

I don't know what I would do without a hospice team to lean on. They've not only escorted my mother through this process, but my family as well. We're not the first to be winding down this path, and they're understanding and knowledge keep us empowered.

Thank you Beth H. for pointing out the excellent article in the New York Times yesterday about hospice. And if you're a 60 Minutes fan, there was a fascinating segment on about the cost of care in terminally ill patients (it is also very pro-hospice).

These concepts and ideas are hard to wrap one's head around. I remember right before my mother's mother passed away several years ago, and many of us felt unsure of how to act or what to say to my grandmother. Mom on the other hand, was a natural. She never shied away from the topic of death, dying, wishes, amends, and tears. She passed around a book to all of us that I would highly suggest everyone read, regardless of whether you've lost or are losing someone in your life. I'll give a hug the aunt or uncle who names the title first because I'm having a serious brain fart at the moment.

I'm heading back to McLean now, with clean laundry and lots of obnoxious holiday decorations for Mom's room, which is looking beautiful by the way. See for yourself...

Mom's gallery continues to grow!

And her desk is filled with books, pictures, and cards from all of you.