2020 took a definite turn for crazy in March. What was the norm was no longer the norm in the outside world, but magically we had already sort of been prepared for that, and while things in the community, state, country and world were tossed into turmoil… life inside the walls of our home stayed the course and mostly to our normal routine. I guess you could say we’ve been practicing “self-isolating” of some fashion for the last 5 years! So it wasn’t all that out of the “normal” for Mom or me.
Mom, of course, doesn’t really remember the day to day stuff with COVID-19. She has missed the regular weekly visits from family members the last 3 months, though. Her 88th birthday and Mother’s Day came and passed without the celebration and hoopla that usually comes with a gathering of any size. However, we were able to use technology to get most of the clan together for a brief celebratory call on Zoom and grab a screenshot or two. She was thrilled and loved hearing everyone sing Happy Birthday to her.
She’s also getting a little sassy this year. There have been a few changes in the last few months that indicate some additional losses in cognitive behavior — she still enjoys her music and loves keeping time to the rhythms and movements she sees in the audiences as she views the videos. We’ve noticed that much of the head-picking ceases when she is watching and listening. We’ll keep playing those DVDs.
Lesson learned from our experience with COVID-19 will definitely have some impact now and in the future on how we interact with those outside the walls of our home, however, we have been blessed with our basic needs being met. A caring community of family, friends and health professionals. We are grateful for every one of these individuals and the roles they play and the support they offer in our behalf when needed.
But 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.
Today, will be just another ordinary day. Nothing spectacular happening. Nothing notable on the calendar…. at least it’s that way from Mom’s perspective. To me, it’s a whole different story!
We have another opportunity to share space and time with Mom. An experience we wouldn’t have imagined being possible a few short years ago! We get to experience everything at a “heart” level.
So grateful for
each and every smile.
moments of laughter
tapping of toes in time to the music
occasional bursts of conversation
rare moments of lucidity
recall of a memory from long ago
the occasional calling me by name
sense of humor
Looking forward to a #bestday kind of day! Nothing says this is just “another day” in my books.
Grateful for the moments…
There have been so many moments this past week that have reminded us to find Joy. See the joy and live the joy, regardless of the circumstances. Thankfully, we were able to find some in nearly every instance and happening. While “change” was definitely a huge part of our week, maintaining the routine for Mom’s sake proved a bit challenging at times. However, even with things being a bit up in the air and the routine slightly out of sync for a few days, we all managed well and thankfully, at the end of each day, the smiles, thank you’s and I love you’s continued to fill the air.
There’s generally a smile — as the day begins and again as the day ends. Some days the smiles are bigger and her face and eyes light up with such a sweet and delightful energy. But those days are becoming fewer and definitely farther apart. Alzheimer’s is taking that away too. She slips a little further into the forest every month. It’s hard to gauge how far sometimes as there are flickers of lucidity… moments of being “all present” that bless us with an all too brief glimpse at the Mom we all know and love — and will continue to love.
Mom, your light continues to “glow” albeit a bit dimmer as your Alzheimer’s progresses. We reflect on moments, experiences, your growing up years and friendships past and present. There are days your smiles are much broader as the memories flood and bring joy to your heart.
You gave us perfect examples of:
- Family first.
- Work Ethic.
These were and are all important components in our lives. You set a wonderful example for us – and we are truly blessed to call you Mother. Thanks for being our light for all these years and guiding our paths… your gentleness, sweet smiles, thoughtfulness never cease to amaze me even on the darkest of days when your light seems to go a little dimmer.
Allow your words to “lift” all you meet today.
Regardless of our ages, it is truly a blessing to be able to share words that lift rather than beat down others. It’s my belief, as well, that those with advancing dementia/Alzheimer’s deserve even more words that “lift” them up as they deal with uncertainty, loss of the familiar and more importantly feel more isolated as time moves on.
We are truly blessed that this comes so easy with Mom and her gentle spirit. Her smile and the twinkle in her eye are still an every day gift she presents to us even on the worst of days. Every night we are gifted in sharing an exchange of ‘Thank you’s” and a sweet gentle reminder of how precious our relationship is. Love, joy and good outweigh any negative the day has held and I’m ever grateful that we have more good days than bad every week, and that the bad are just specks in the whole of the day.
Sure, we do have bad days, but who doesn’t? Upon reflection, even during a day filled with transitions into another phase or stage of living, those are truly nano-seconds of time when we see that there was far more time spent enjoying each other’s company and experiencing new life lessons and how to navigate those waters in better ways positively.
I hope today will be a gift and blessing for you. It already is for us.
See the good — make it a #bestday
It’s been an interesting week. We’ve experienced some highs and lows. We’ve watched as her eyes fill with joyful tears as she hears of family news and experiences the joy of the successes we’ve shared of children, grandchildren and great-grandchildren. Every one a milestone. Photos, videos, text messages and calls and impromptu visits. #bestday
I have watched her face light up, her smile grow broader and then dim as the memory fades all too quickly. However, a day never goes by that there isn’t a thank you or I love you exchanged with everyone she meets or sees as they visit our home.
I can only hope that Alzheimer’s won’t steal that away for a bit longer… I cherish hearing her voice. Seeing her eyes light up and her beautiful smile. These are the good moments… to be treasured forever.
There are treasures to be found in the magic of choosing to re-focus.
There are days when it’s difficult to look beyond what is directly in your face and blurring out everything that is going right. Make today your day to stop, reset the lens to clear out the blur and focus in on the blessings that are there to celebrate!
You were meant to be a “light.” A guide for others to learn to light their way
and share with others along their path.
with all the hustle and bustle of the holiday season, make time for you — fill your cup!