January – new starts

2021 has rolled in and thankfully, uneventfully as far as Mom is concerned. She’s doing very well and is still hanging in there and seems content with the “status quo” for the time being.

We’re still practicing social distancing and infrequent visits from family and friends. It’s difficult when you have a large family and gatherings are just not feasible… sure hoping that things will shift a bit and we’ll be able to gather together sooner rather than later. And we’re grateful that thus far, COVID hasn’t passed through the door.

We thought that we would have to implement more care by this time into our term of supporting Mom, but we’re grateful that she’s still able to converse with us, feed herself and make some of the more simple choices about her day. She’s broadened her eating choices and we’re back to a near full menu of choices again. She shares her thoughts with us on occasion, but getting her to dance has become a very rare occurrence… She will still tap her toes and snap her fingers to the rhythm of the music that is playing. Her smile is broad and there’s a twinkle in her eye throughout the day and the customary “thank you” rings out as we close out the evening and tuck her into bed.

Favorite things this month –
Andre Reiu
Musicals on DVD
Grilled Cheese Sandwich
Raspberries
Pecan Sandies
Diet Coke
Red PowerAde
Lunch in bed (more days than not)
Late night TV watching – thankfully there is a sleep timer!)
Fresh flowers
Zoom calls with family
Snail mail

We’re hoping for a great rest of the month… wishing the same for you too.

Everyday offers a fresh start and new beginnings. Take advantage of what the day holds for you.

Christmas 2020

The challenges brought on my COVID-19 during the year have if nothing else, raised our awareness of what is most important.

Family
Health
Time
Creating opportunities for memory making moments
The importance of movement and music for those with memory issues

Family – we have a relatively large family and gathering since March is just not possible with Mom’s compromised immune system. Technology has supported us to some extent, but Mom hasn’t even been able to cuddle with her more recently arrived great grandchildren. For that matter, neither have we had the opportunity to spend much time with our own grandchildren. Family calls have helped with that – but they still seem all too infrequent to keep us all connected.

Health – We’ve been very fortunate that COVID hasn’t come through our door. Mom hasn’t experienced her yearly bout with bronchitis or pneumonia and we’re continuing to knock on wood that our efforts to keep her well will protect her and she will remain healthy.

Time — there are days that despite the fact we spend so much time together in the same room, the time we have to converse and share is getting away from us. We’re grateful that her ability to talk and feed herself is still part of the everyday norm. We are noticing more overnight conversations with others and the joy most of those moments bring to her.

Creating opportunities for memory making moments — Zoom calls with family, sharing a conversation after the call, reflecting on things that were shared. Sharing candid moments with close family members via email or our family FB page. Allowing family not able to visit the opportunity to share in those moments..

The importance of movement and music — the truth is, when we first started using music therapeutically, we never dreamed that we would be building some new neural pathways… We understand that memory won’t magically return. We have been blessed with amazing conversations and moments of clear lucidity and an ability to express needs or wants without fumbling for words. While dancing with us is still not as frequent as we would like, she still has amazing strength in her arms and legs and is still able to transition from sitting to standing and move from one chair to another and so on. She asks for music on a daily basis now and we no longer offer it as a first option. She continues to make choices that will impact her day.

Here’s hoping to more of the great stuff coming our way in 2021 as we continue our journey with Alzheimer’s and Mom.


Wanderings

We’ve once again entered the cycle of overnight ups and downs… more ups than downs, more awake than sleep.

Last weekend one of her wanderings required a visit to our local Insta-care after a stubbed toe looked like one or more broken toes. Thankfully, the X-rays found nothing broken and everything that had seemed displaced have gone back into place and the pain from earlier had diminished a lot.

Today, as she rests in her chair with her favorite music playing in the background I’m grateful for the snatches of sleep she does get here and there. For her smiles and attempts to sing along to the music she recognizes.

Alzheimers sucks

Alzheimer’s sucks… and that’s a given as your loved one continues to fade into their own world. We see her staring off into space more often now… conversations with unknown “guests” and in a language we don’t understand often fill her room at night. Stealthy moves to bypass the motion detectors — and beat us to the door.

Despite her nocturnal adventures, we’re forever grateful for each and every day. Smiles continue, a few zingers ring out and a genuine thank you fills the air every night when she’s tucked into bed. Smiles light her face when we wake her up for the day — even if she’s not gotten the best of sleep the night before.

There are times when she’s still as sassy as ever…. I love this image of her and it will always be one of my favorites. Alzheimer’s can’t take away her smile, her beauty or the love I have for her.



Summer is coming to an end

lou+%1OQR8apD%mLUOKOjQWe’ve gotten this far this year with gratitude that COVID has stayed away… but we’ve been extra careful and Mom has basically been sheltered in place since March.  One downside is having to cancel family gatherings.  Mom’s immune system is pretty fragile at this point.  She hates masks and anyone wearing one tends to set things off.

We’ve been experieincing a little Sundowning with increased frequency which makes for some very interesting moments.  We’ve played many of her DVDs of her favorite music to the point they will have to be replaced.

It is always a delight, however, to see Mom’s smile as she recognizes a piece of music.  Her occasional request to dance to one piece or another or lead the orchestra with her hands.

Today is a special day — it’s the 5th year anniversary of our decision to become full time caregivers… we haven’t regretted a single day.  Thanks, Mom for the opportunity to share this time with you.

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…