Month: October 2019

change is inevitable

This journey is an ever changing one.  It’s rare that any two days are exactly the same despite our efforts to maintain a relatively consistent routine throughout the week.

It’s becoming more and more difficult for her to get from point A to point B – even if there are just a few steps involved.  We’re now monitoring via a health tracker to keep closer tabs on her BP, BPM and Oxygen levels.  And we feel incredibly blessed if the number of steps per day hits the 100 mark!  She does likes the idea of a wearing a watch again, but isn’t all that thrilled that the band isn’t more than just functional.  We might have to look for another band that will make her feel more “fashionable.”

The cycle of sleepless or near sleepless nights is in full swing again.  Grateful to know we’ll be back to a regular sleep cycle again in a few days.

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She still loves her André Riéu DVDs.  And we’re listening to music for most of her waking hours now.  The collection is growing.  She still refuses to “dance” with us though her feet move to the music and we’ve seen her holding her arms as if she is dancing or being the conductor of the orchestra.  Her smiles are broad and her eyes twinkle. Once again, the music brings the power of language back and we have some of the most amazing conversations – she’s alive again- even if it’s just for an all too brief moment in time.

She enjoys visitors – and she will be surprised once again when the family descends today for pictures and dinner this afternoon.  While the menu may not be one she’ll feel comfortable eating, with others in the same room, her standard “grilled cheese”  will be available.

 

Life continues

20170826_180631But not without a few bumps (large and small) along the way.  Decline is inevitable, but to have to watch it happen day by day is heartbreaking for all of us.

We’ve experienced highs and lows in the last couple of months and the cognitive changes are more prevalent than previously.

Eating is becoming a process… lots of cueing and reminding to pick up a fork or spoon or to place in a hand.  Smaller portions and more often than not, a Grilled Cheese sandwich is the fare of choice when she turns away other foods that have been prepared for her.

On the lighter side, she still has a sense of sheer joy at times that completely catches us off-guard.  She’s adamant about not “dancing” to the music on her feet; answering our request  to dance with a resounding and firm “NO.”  But we’ll catch her “conducting” the orchestra, tapping her feet or trying to snap and clap to the music that “turns the lights back on.”

We catch her with a smile that lights up her face as she finds the words to the songs and joins in a chorus or two.

Hoping to catch and record that in the next few days before her voice is gone all together.  Maybe today will be our lucky day to catch her singing.