July has come and gone

Oh My!  Where has time gone?  I’ve thought about sharing a few updates over the course of the last 6 weeks, but continue to get waylaid by life and time spent with Mom.

If you read my last post, you know that the last round of PT visits didn’t quite go as planned.  The PTA wasn’t the best fit for Mom and it was difficult to get Mom to do the exercises when the PTA wasn’t here.  We did learn a few things with that experience… and have resolved that Mom’s well being doesn’t always mean bringing in an army of reinforcements.

We still experience daily, weekly, monthly highs and lows, but overall, the past month wasn’t as much of a low as the one before.  Change is hard and upon reflection, probably as difficult for the caregiver to handle/accept as it is for everyone else.

About 2 weeks ago, the finishing touches were added to the wheelchair ramp.  It makes it so much easier to get Mom in and out and spend a little bit of time outside every few days — we haven’t been able to do that recently since the air quality has been so bad due to the recent wildfires in the area.  But when we have been outside, it’s definitely worth the smiles and seeing her eyes light up as she takes in the sights and sounds.


A side note:  Self-care for the caregiver is again at the top of my list.  I hope you do the same.  Despite the fact that I can’t control the number of hours of sleep I get at night right now, I can and do make time to take a walk, observe nature, get a little bit of sunshine, read, study, take a class, shop, go to lunch, and make time to do a few other things I enjoy.

It’s been a blessing at so many levels. We can do so much together with the right support.

Remember, Be Kind to YOURSELF!  No one else can be the kind of caregiver you were meant to be. 

a month of changes…

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Transitions are difficult — and difficult days seem to present themselves more frequently and with greater challenges than we are often prepared for.   I’ve tried to write this post several times over the last month… but couldn’t bring myself to write the words.  Today, after many deep breaths and continued prayers, we venture into the life of transitioning with Mom into the final stages of Alzheimer’s.  It’s not easy and although we’ve done much to prepare as caregivers — there are still lots of moments of angst and despair.

Several months ago, we shared a bit about the mobility issue and at a recent appointment, we decided it was time to bring on some extra support… we’ve had PTs coming in for the last 7 weeks in hopes of keeping her moving  and out of the wheelchair for a while longer — the difficulties continue and I see her sadness increasing as she realizes her mobility is fading.

We feel blessed to have figured out what we believe to be the cause of the increasing headaches and “itchies”… while the “picking” hasn’t stopped, we are thrilled with an increased number of headache free days and being down to one application of a topical for the itching a day.  We appreciate and value those who have been helping us actively advocate.

We appreciate our family so much.  We are so blessed to have them close by and willing to step up and help when needed.

Our mantra for now is to “savor the moments.”  We have so much to be thankful for.

 

 

 

find joy

Grateful for the moments…

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There have been so many moments this past week that have reminded us to find Joy.  See the joy and live the joy, regardless of the circumstances.  Thankfully, we were able to find some in nearly every instance and happening.  While “change” was definitely a huge part of our week,  maintaining the routine for Mom’s sake proved a bit challenging at times.  However, even with things being a bit up in the air and the routine slightly out of sync for a few days, we all managed well and thankfully, at the end of each day, the smiles, thank you’s and I love you’s continued to fill the air.

 

a smile

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There’s generally a smile — as the day begins and again as the day ends. Some days the smiles are bigger and her face and eyes light up with such a sweet and delightful energy.  But those days are becoming fewer and definitely farther apart.  Alzheimer’s is taking that away too.  She slips a little further into the forest every month.  It’s hard to gauge how far sometimes as there are flickers of lucidity… moments of being “all present” that bless us with an all too brief glimpse at the Mom we all know and love — and will continue to love.

Mom, your light continues to “glow” albeit a bit dimmer as your Alzheimer’s   progresses.  We reflect on moments, experiences, your growing up years and friendships past and present.  There are days your smiles are much broader as the memories flood and bring joy to your heart.

You gave us perfect examples of:

  • Family first.
  • Service.
  • Work Ethic.
  • Education.
  • Art.
  • Play.

These were and are all important components in our lives.  You set a wonderful example for us – and we are truly blessed to call you Mother.  Thanks for being our light for all these years and guiding our paths… your gentleness, sweet smiles, thoughtfulness never cease to amaze me even on the darkest of days when your light seems to go a little dimmer.

 

 

hidden pain

As we watch Mom move deeper and deeper into the fog filled forest of Alzheimer’s, I’m forever grateful to have the opportunity to spend these micro-moments with her.

We celebrated her 86th birthday a few days ago… what a gift to have nearly all of us together for a couple of hours to catch up, enjoy seeing Mom’s smiles and even make a few memories along the way.

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We’re grateful to spend time together as a family ….. finding joy in those moments helps ease the pain of the daily loss of the little things.

Recently, I shared a project with her… a small piece of artwork I’d been working on.  I saw the delight in her eyes replaced with a wistful look of remembrance of art she had created not so many years ago.  I’m grateful we still have a few pieces of her art and can share some of those pieces as a memory with her in printed and digital form.  Tears form in her eyes as she traces the images with her fingers, feels the textures on the canvases.  Together, we breathe through the moments and move forward.

adventures @ midnight

Let your good day become a GREAT day!

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Some nights, this mantra has been the only thing that gets us through it… and there’s been a lot happening in the last month or so.  More lucid dreams, hallucinations, wanderings, and conversations…  and they only happen between midnight and 3 am.

So…. We’ve tested pressure pads and detection alarms hoping to find the one(s) that will work best for us in keeping Mom safe as long as she continues to wake at night and feel the need to “take care of something.”  I wish she could tell me about her more lucid dreams and what she needed to take care of.  As it is, I can only  tell her “thank you” for being so responsive to a need and wanting to help; then gently encourage her to go back to bed and get some rest… hopefully, that rest will last a little more than an hour before the next “alarm” sounds.

I’m grateful for technology that helps us keep our home safe and keep Mom safe.  I’m grateful that even with our sometimes too frequent midnight adventures we can open our eyes, be grateful and smile that we have one more day with Mom.

 

Lifting others

Allow your words to “lift” all you meet today.

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Regardless of our ages, it is truly a blessing to be able to share words that lift rather than beat down others.  It’s my belief, as well, that those with advancing dementia/Alzheimer’s deserve even more words that “lift” them up as they deal with uncertainty, loss of the familiar and more importantly feel more isolated as time moves on.

We are truly blessed that this comes so easy with Mom and her gentle spirit.  Her smile and the twinkle in her eye are still an every day gift she presents to us even on the worst of days.   Every night we are gifted in sharing an exchange of ‘Thank you’s”  and a sweet gentle reminder of how precious our relationship is.  Love, joy and good outweigh any negative the day has held and I’m ever grateful that we have more good days than bad every week, and that the bad are just specks in the whole of the day.

Sure, we do have bad days, but  who doesn’t?  Upon reflection, even during a day filled with transitions into another phase or stage of living, those are truly nano-seconds of time when we see that there was far more time spent enjoying each other’s company and experiencing new life lessons and how to navigate those waters in better ways positively.

I hope today will be a gift and blessing for you.  It already is for us.