the journey is done

May 22nd – Mom suffered a devastating intracerebral hemorrhagic stroke. She was awake and lucid when the EMTs transported her to the ER. The doctor explained what had happened and that there were two options, transport to another hospital for care in a neuro ICU or hospice. Mom chose hospice and we knew that would be what she would have wanted us to choose if she hadn’t been able to convey that message to the medical staff in charge of her care. She was so happy when the EMTs brought her home again and placed her back in her room and comfy bed.

We celebrated each and every day after that. And on June 3rd at 4:32 am, Mom’s journey was complete. She passed away peacefully. I was grateful to be there when she took that last breath.

We are forever grateful for the Intermountain Homecare & Hospice team that helped us in Mom’s final days. Their support was wonderful and while Mom surprised us all by ‘extending’ her stay nearly a week beyond what anyone thought. We admire what you do and the compassionate care you provided not only Mom but our family and continue to do for other families in similar circumstances.

While this part of our journey with Mom is now complete… we’re looking at how we can help others in similar circumstances navigate their journey with Alzheimer’s – or as caregivers and know that they aren’t alone.

Our hearts and lives have been forever altered through this experience.

The end isn’t too far off

Yesterday didn’t quite follow the “plan” of the day. Mom had a stroke and it’s a bad one. She’s resting comfortably at home under hospice care. We imagine that the time left is pretty short. And as always, she surprised everyone! Doctors, nurses, techs and more. She shouldn’t even be awake, but she is. She shouldn’t be able to smile, but she can.

She’ll fade a lot faster now. I’m sure we only have a few days left as the bleed continues in her brain.

We’ve thoroughly enjoyed the last several months — the laughter, smiles and quirky things she’s shared with us. We’ve listened to music until we know every song and intro by heart. Every performer’s actions and maybe even a background story or two. Watched her favorite movies, wearing out a few DVDs and even having to replace a DVD player. 🙂

Shared more good than bad. Learned lots of new ways to reframe things to get around her stubborn streak at times. Dealt with more intense sundowning moments… Late nights and early mornings, when all we would like to do is catch up on a couple of hours of sleep.

Yesterday threw a real ringer in the works. I’m not ready for her to leave, but I do know there are those on the other side of the veil anxious to greet her and she’s growing more anxious to be there with them. Last night’s pucker up of the lips and reaching out for a hug was a demonstration that the veil is very thin.

We love you Mom — We cherish the last 5 years of being able to care for you and have you in our home. To be around your sweet spirit every day, rain or shine. There are so many things I’ll miss — and a few I miss already.

I love you unconditionally. With all my heart!

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.