Journey Notes

Listening

As always, listen and speak from the heart. You’ll never go wrong.

One of the most treasured lessons learned from Mom has been to remember to listen with the heart. I think that was her greatest gift and something she always lived by — despite the devastation of losing some of her most precious memories. She listened with her heart daily… and those moments she was able to voice her thoughts will always remain in my heart.

floods

See the good that is all around you and take a moment to share kindness today.

Today is the anniversary date of Mom’s stroke and her last 10 days of earthly life. Lots of memories are flooding in and thankfully, most of them good ones. (https://greatitudes.com/2021/05/23/the-end-isnt-too-far-off/)

Alzheimer’s took so much away from her and during those early years, she had the foresight to take some time and write down a few things that we have discovered recently. I’m very grateful we have those letters as they give us a more personal insight into how she felt as things slipped away from her memory.

Reflections of Covid-19

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.

Twists and Turns

The last several months have been trying to say the least and just when you think you’ve got a handle on it… another ringer gets tossed your way… Alzheimer’s keeps you on your toes! But frankly, we wouldn’t trade a minute of it.

Grateful that we’re still finding blessings in this caregiver gig and many things to celebrate every day.  We have one more day of smiles, thank you’s, twinkles, thumbs up and so many more gifts presented to us daily.

Lessons learned include self-care; regenerating energy to handle the next sleepless night; making sure that your own personal needs are not put aside as you spend more time caring for your loved one.  Some days it’s more difficult to balance than others, but we continue to learn and grow.

When possible enlist others to help with the care, even if it’s just for an hour or two a week — give yourself a breather.

Follow the wishes in the directives — if you’re lucky to be able to share those decisions with other family members, it is so helpful.  Money, medical care, and day to day care decisions may not have to be yours alone to make.  Enlist other members to help with those greater decisions.  Be honest with yourself and with others on how these things will impact your life.

If you don’t feel comfortable doing “it all,”  find ways to spread the responsibilities.  We are blessed to have 3 of my siblings close by to help with some of the decisions and to also give us a break on occasion.  I know that Mom enjoys their company just as much as we appreciate the opportunity to get out for a little while.

              Don’t forget those rare opportunities that will present themselves when you least expect them.  Have a camera or recorder close at hand and if there’s another caregiver close by, ask them to be a part of the process of documenting the moment.  We’ve had a couple of rare moments when we were totally surprised by Mom’s answer and blessed to be able to document the “dance.”  So much fun and moments we’ll cherish for a very long time.

Alzheimer’s for us presents a little differently every day.  Even though we would love to have each day presented as perfect, it’s rare that they are.  Grateful for those moments that lend themselves to celebrations and high-fives.

  • Today’s celebrations:
    Getting out of bed.
    Choices on what to wear.
    Choices in regards to food and drink for meals.
    Choices in a snack and another choice as to bedtime.
    Broad smiles as she listened to her choice of music; tapping of toes and fingers to the rhythms and beats
    No picking for 3+ hours!

Hoping you’ll find moments to celebrate this week.

 

 

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.

102019

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.