Alzheimer’s

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.

 

 

A bit of a dry spell

a trip outside

Grateful that life hasn’t changed much overall since our last post.  Mom’s holding her own.  Surprising her doctors and hasn’t gotten to the point of just giving in and giving up.

Her last visit with the neuro left him stuttering.  I think after reading the notes from her last visit with her PCP he figured things were really going downhill… as Pallative Care is now on her chart.   He wanted to know if hospice was making regular visits.  Ummm, no.  We’re not ready or to that point yet.

We did talk about having to cue more frequently, change things up a bit to keep the anxiety levels to a minimum and music seemed to be the key in that respect.

There have been several studies recently concerning music and Alzheimer’s.  And we have to agree with their findings.  Mom loves the music from the 30’s, 40’s and early 50’s.  We’ve been able to find several stations that cater to those eras and they bring her lots of joy. She’s able to relax and enjoy the day and evening more frequently.  Her appetite increases and she asks for her music quite often now.  We’ve noticed that the “picking” decreases as we find she’s keeping time to the music with her hands and her feet. And her hair is growing back.

We’ve listened to audio books and then watched the movie… she prefers the movie to listening to the book.  Books and magazines don’t hold much interest at this point in time.  She does enjoy looking at pictures and we’ve just learned that some old family albums have turned up in a box and will be delivered this week for her to have at chair side.  I think she’ll enjoy that.

We continue to be grateful for each day we have with Mom.  She can be feisty when she doesn’t want to do something or isn’t feeling particularly well — but for the most part, she is the sweet, kind, ever smiling woman we all love and care for.

Feeling blessed to have one more day…

 

 

 

Spring 2019 has arrived

We recently celebrated Mom’s 87th birthday.  Such a wonderful day despite the April showers.  Before the party, we were lucky to find a couple of fun photos from the past —

and continued the process of documenting her life. The photo to the left is Mom around age 2.  Looking forward to scanning more images as we continue to go through old scrapbooks and boxes of memorabilia that have been in storage for a long while.

We are anxiously looking forward to the weather warming up a little more and being able to take Mom outside to enjoy a few sunsets and dinner outside.  She says she’s looking forward to sitting outside for a while too and looking at the mountains, the fruit trees and wild roses that grow along the fence line.

We are grateful she still has her “voice,” her smile and twinkle in her eyes.  Her doctors are pleased with how well she is doing overall… and she’s been relatively healthy (knocking on wood) since early February.

She still enjoys music, watching old musicals and movies from the 30’s, 40’s, 50’s and 60’s.  She prefers to just sit with her sunglasses on (her eyes are really sensitive to light) and listen to whatever her choice has been for the moment … she’ll tap to the beat of the music, try to sing along to the song with the lyrics she remembers.  Regardless, there’s always a smile that greets us even on a bad day.

It’s difficult at times to come here and document what’s happening…. but we are ever grateful for this opportunity to be caregivers and share this space with Mom.  She’s such a wonderful example of living with grace — we’re are truly blessed!

music for the soul

It’s been a while but we’re still here.

We’ve always known that music has soothed Mom’s anxiety.  Today when the power went out, she was a bit anxious.  Grateful for the hotspot  and having some of Mom’s favorite music in the queue.  She listened for nearly 2 hours….  smiles and tapping of toes, keeping time with her hands and finally, a brief nap while the tunes continued to play.

Tunes from the 40s, 50s and early 60s seem to bring joy to her.  So we’ve found several channels on Google music that she loves to listen to. She doesn’t like to wear headphones so we just turn up the volume a bit.

There have been several studies shared recently regarding music and Alzheimer’s patients.  The overall results indicate that music can be beneficial, especially when the music is something the patient can relate to.  I have to agree.  Mom loves musicals, the old standards and the big band era kind of music as well as classical and some opera.  She can’t always remember the artist or the name of the tune, but we’ve heard her singing along and she’s definitely able to keep time with the beat.

There’s joy in every note —

 

On a side note:  Mom’s eyes are very sensitive to light due to some of the meds she’s taking.  So she wears her “glasses” nearly all of the time. And we’ve fully transitioned to pallative care…  Every day brings new challenges for her and for us as her caregivers.  Mobility is our biggest concern at this point.  Her ability to walk has once again declined.

We are grateful for each moment we have to spend with her and treasure each.

 

Moments – January 2019

It’s amazing how quickly the days have passed this month.  We continue to see small changes in Mom — grateful they don’t happen all at once!

We’re entering our 4th year as full-time caregivers and there are no regrets.  NONE!  We are blessed in so many ways.

Smiles and tapping of toes to the music you love to hear.  Old movies from the 30’s, 40’s and 50’s bring you joy.  Visits from children, grandchildren beyond bring you happiness.

Remembering important dates are beyond you, Mom, but your face lights up and you delight in hearing it’s someone’s birthday or a day for celebrating anything!  You love to see pictures.  We’ve been blessed to become the “keepers” of our family history and we have enjoyed sharing our finds the last few months.  I hope the images we uncover over the course of the next few months will continue to bring joy and a smile to your face.

Talking on the phone is nearly beyond your reach, but there are days you surprise us and a full blown conversation unfolds before us.

You prefer sandwiches and finger foods.  Rice is a no and steamed carrots are a favorite.  We always have a back up plan if you don’t like the meal that’s been prepared — and there’s always a root beer float (with a scoop of protein powder) or a fruit smoothie if nothing else appeals to you.

Bedtime smiles, thank you’s and a deep breath of appreciation.  I love you’s and blowing kisses are still a part of our nightly routine.

Thanks, Mom for being so gracious in allowing us to be a part of this journey with you.

 

blessed for sure

Thanksgiving has come and gone… and we had a very quiet one.  Grateful for each and every moment we get to spend with Mom.  It could have been so much different if the stroke had been any worse.

November 17th just as we were prepping to get Mom ready for bed, she collapsed.  We are very fortunate that EMS arrived within 5 minutes of our 911 call.  Mom was on her way to the hospital within 10 minutes -and by the time we arrived, she was having a CT done and her room was ready in the ER.  Mom was responsive and alert when we saw her about 20 minutes later.  She recognized my brother and said, “That’s my son, Pete.”  Such joy for my brother!  And I was just thrilled that she’d gotten a full sentence out and her words were clear as a bell.

We spent the next couple of hours at the hospital.  Mom was doing well enough to come home.  We all got to catch up on a bit of sleep and decompress a bit.

She’s doing remarkably well since that episode.  We’ve completed the follow-ups with her primary and her neuro. Neither see any residual effects and were even surprised that she answered some questions for them that she hadn’t been able to do in previous visits!

Fast forward to yesterday.  We had our traditional family gathering with the family.  Most everyone was able to be there.  We’re all grateful for the privilege we have of spending one more Season of Giving and Loving with Mom.  Lots of precious memories were shared and I’m pretty sure that most everyone spent more time doing the same on their trips home.  More time was spent sharing stories than taking pictures.  We’ll take those pictures with Mom today and add them to the growing “library” of memories in our family’s dropbox folder.

Wishing you all joy-filled moments and memories to treasure today and throughout the days to come.  Happy Holidays!

     Our thoughts shape who we are.

 

the harvest

Throughout our lives we have planted seeds in our relationships.  I often wonder will the harvest shared with my kids be as sweet as the “harvest” we are now sharing with Mom during this season of her life?


My thoughts about the current harvest that is underway is that we have been blessed beyond measure!  Mom’s efforts throughout her years has been one of nurturing gentleness, kindness, compassion, joy, laughter with a generous supply of humor.  She has tended this garden for all of her years.  She hasn’t withheld her love nor her faith with each of us.  She’s plucked the weeds and tended to the plantings with tenderness and more love than we may have been entitled to in the moment —

As we go about our part now, as her caregivers tending to her garden (memories, children, grandchildren, great-grandchildren) we want to ensure that the legacy of a bountiful harvest will continue on.

Gratitude nurtures the love we have for her.  The beautiful scenes she painted that hang in our homes will continue to remind us of her talent and the joy that painting brought to her for so many years.  The family favorite recipes that we’ll cook, bake and serve throughout the holidays as we remember with fondness the joy that gourmet cooking brought to her heart and delighted our palettes as we grew up.  Hand-crafted gifts and one of a kind holiday cards will continue to bring us joy as we continue the traditions that have blessed our family for so many years.

And mostly, the word REMEMBER will continue to be the best nutrient for our soil as we prepare for the next season of growing and harvest.