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…

 

 

 

May is drawing to a close….

It’s been nearly a month since our last post.  Alzheimer’s is so devastating!  Mom’s hanging in there, but we are beginning to see a greater decline in some things and yet, there’s a status quo in others.

We’ve added bed rails and extra sheets to to help us transition her in bed when needed.  As caregivers, we’ve learned new skills to help us help her… Some days are definitely harder than others.  Walking safely and for more than a few steps has become a greater challenge. She doesn’t like her new walker — and I have to admit it is a bit awkward with a longer profile than she was used to.

We’re thrilled that her hair is growing back — the “picking” has subsided even more as we eliminated another drug from her nightly “cocktail.” We might be able to style her hair in the near future without doing a comb over and get a wonderful portrait to share with family soon.

A few things that haven’t changed are her love of grilled cheese sandwiches, berries and bananas.  Her smile, her love of music, the twinkle in her eye and her gentle ways.

Every day is a great day regardless of the struggle.  Grateful for the gift of her in every 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.