Awakened this morning to the living reality of the paradigm shift in life with my Bill. Everything has changed since I heard the doctor say, "You failed the test, you have dementia", as we sat silently absorbing those words in that pristine little room...
I think I quit breathing for a bit...
while the bottom fell out of our bucket list and our hopes and dreams for our anticipated senior years evaporated.
a wondrous sense of purpose and brand new hope grows...as I see with new eyes in a perspective I never imagined having.
I know we are living in the sweet times, where my Bill is still very much here and his little moments where he gets confused can be chalked up to simply "getting old"...because the two are so similar, yet in essence, dramatically different.
I have joined a support group for care givers of family members with dementia, to be encouraged, but to ultimately be an encouragement. You see, I believe with every fiber of my being what the Holy Scriptures teach us:
Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.
I Corinthians 1:3-4
Today, I sit quietly by the fire, in the moments before dawn, while the mist hangs soft and low...
the candies are lit...
with a fragrant steaming cup of pour over songbird coffee...
absorbing the very Light of God in this moment...
and my heavy load is once again...
I gave myself a gift of today.
I was scheduled for about 60 hours this week, Monday through Saturday. When I get to the point where I would gladly pay to not have to go to work...that's when I know I can't stretch myself as far as I can stretch my budget.
So...I called in saying I needed to attend to personal business.
I slept till 5:30 and stayed snuggled and warm under the covers till 6...then up to hug and feed my sweet kitties and prepare a delicious cup of pour-over songbird coffee. I read the second half of John chapter 5...
Oh my Jesus...ever my Chief Encourager!!!
(I am rather possessive, I know...very much aware that the word "my" is very important to me...it rather defines how I view my loved ones...not in a selfish sense, mind you...but as in a familial relationship sealed with an unbreakable bond...the love of God.)
I have a need for the Nest to glow with my touches of care and beauty...welcoming my Bill home from his business trip to tweak a sound system for a large Christmas production in a sister state. He is pushing himself with a fierce will to continue to work as long as possible, learning how to communicate and compensate with his trusted clients. He is being so brave....we even tease each other, using humor to ease the forgetful or confused moments.
I have been SO WEAK, my choices have not the most nutritious that help the scale stay stable.
So...as I am adjusting to my new way of life, I have not taken the time to take care of myself...even my water intake and skin care is suffering.
So...today is a "reboot day"...
I will make my list...
and make the most of each moment to enjoy the process of renewing and refreshing myself and my little love nest...
with a healthy happy heart to welcome my Bill back home in a couple of days...
my tidy, glowing Christmas Nest will welcome me home from work, too...
and I will softly smile...
or maybe giggle and be so thankful I made the most of today.
I wrote this when grieving over my mom's death this time 6 years ago...it has rung true these past 2 months since my Bill’s diagnosis.
In deep grief...we keep fresh bandages within reach...quietly changing them as needed...cocooning ourselves in them...and disengage and distance ourselves from living.
There comes a time when those wounds stop seeping and oozing...and require fresh air and sunshine to begin the healing process.
We plan ahead the places that won’t jar or bump or re-injure...and carefully step out...with courage...and hope.
He just left for the airport, heading to Los Angeles for his second major business trip since his diagnosis.
I was in a different place emotionally on his last one...feeling scared and protective and anxious...wondering if he would get forgetful...if anyone would notice...if he would be sad or scared or lost, needing to be home...if it was his last working business trip... or...if he would even be able to keep working.
Then, he called...cheerful and upbeat...when he said he told our client he had early dementia, the meds were helping and he would work as long as he could keep them satisfied with his services...hoping and praying he had at least 5 more good years left to offer his services.
That changed everything for me... for us!
We had an intense and intimate conversation this week about how the two of us want to proceed in our life together, with this fresh paradigm shift, living with Dementia.
You know our conclusion?
To continue the way we have lived our 44+ years together: to trust God...and trust each other. I promised I would not "mother" him...assuring him that he is my man.
He promised he would ask for help, without feeling his manhood is slipping.
He clearly stated a renewed enthusiasm for his God-given passion for audio...to diagnose problems and offer prudent solutions according to the clients budgets...and to teach...passing along what he has learned in his 50 years of professional experience...continuing to help provide for our financial needs.
I will work as a substitute teacher and when the elections roll around again, and hopefully have some paid singing gigs, to build back up our savings.
We concluded to move ahead with purpose, dignity, joy and humor...in continued thankfulness with the greatest gifts of all from our Creator, Redeemer and best Friend:
all to the glory of God...that His purposes be fulfilled in our lives together...and keep lost in wonder, love, and praise.
There is a new "normal" for me:
a change, so small no one would ever know...or even suspect...but I know...because I know him so well...my best friend...my lover...my other, better half...and a fresh small wound happens somewhere deep inside my hopes and dreams, wants and needs...yet beginning to heal almost as quickly as it opened.
Just when I think there may be a little respite from the hurting...a fresh new wound cuts me to the quick.
This is early dementia...
God have mercy.
This afternoon...he left his car door open in our driveway.
I pulled in, and my heart sank.
It has happened before...but before...I made up excuses in my head.
No more excuses...
I know better now.
There is a peace that cometh after sorrow, Of hope surrendered, not of hope fulfilled; A peace that looketh not upon tomorrow, But calmly on a tempest that it stilled.
Excerpt from a poem in "Streams in the Desert"
-Lettie B. Cowman
I remember my mom saying "I just can't stretch that far", when she began being acutely aware of her emotional and physical energy limitations.
I am there...
utterly exhausted and in desperate need to learn to rest in a new way. This Christmas I want to be focused on relaxed calm simplicity...but it's going to require some serious focused energy to get there!
It's where I am today...most likely familiar to you.
I just needed you to know.
I can continue to post my pictures of pretty food and great nutritious choices...but all is not how it appears with me.
I can create a delicious dense nutritious meal...but what about those other eating/drinking choices I am making nearly mindlessly at non-meal times?
I have had very few days that encourage my weight to stay stable, since October, when my Bill and I heard and faced his diagnosis, and my personal paradigm shifted.
Deep mourning began...for both of us... a completely normal response.
Then the clouds lifted as my reality focused on constant acceptance and grace...awakening my sense to be present and thankful in all of my moments with him.
But...nervous late night eating accompanied with wine...trying to prepare for a night sleeping beside my beloved who dreams vivid dreams out loud...and gets confused where he is...is the hardest part of all.
So, my nights are disrupted and disquieting to my spirit.
Receiving this as my new normal has been far more painful than I could have imagined...and this is only the beginning...when it's still so good...and he is very much himself about 95% of the time when awake.
My "self-care" has been "self-careless" and I must get a grip...re-boot myself and reinstate the healthy habits I implemented to get to a healthy weight.
My clothes still fit, but don't feel good, or healthy or pretty.
My skin shows it, too... not just on my face, but my unshaven flakey legs...and all the "fun and pretty" things I used to enjoy have gone out the window somewhere.
I'm just not me!!!
I'm not the "me" I want to be...need to be...to sparkle for my Lord, with proof that He is sustaining me...and I am once again living out my faith, hope and joy!
My prayer life is a constant...a life long habit that is sealed in my deepest being...but I have gone astray in my quiet time in the Word...I even have a new Bible, a gift from a beloved friend, it's precious pages ignored...and my spirit lazily sits and settles...hungry.
We are looking for a new church home...So...not a pretty picture on any level...rather ugly, I admit...but I NEED to be real more than anything...
I NEED prayer...
I NEED encouragement...
I NEED to have one good productive day when I can lay my head on the pillow beside my Bill, and know that I have done what is important to be the "me" that God created and empowers me to be...and then another...back in the groove where I know I can make a difference in the lives I get to touch, encourage and maybe even influence.
So there it is...here I am in tears...glad for you who I long to encourage, by example...feeling like a total failure at it...but somehow garnering enough hope...that I can write expectantly for my tomorrows.
My Bill just totally gave me a "WOW!" moment saying,
My friend Tom, just posted a lengthy message about dementia, and if you know someone with it, share it. I'm going to call him today and tell him I have it. If he didn't really know anyone with it, he will now.
This beloved man of mine...continues to totally amaze me...he blesses me in so many ways...fearlessly embracing the truth...even when it doesn't look good or pretty.
But we love and know and trust and serve our God Who IS GOOD...all of the time...and rest purposely in that fact.
I've been spoiled all my life...My Bill has driven us more miles than I can count...through sun, wind, rain, sleet and snow...at all hours, many late nights and mornings well before dawn...even a few all-nighters through the years.
Oh yes, I occasionally drove, but rarely for any lengthy stretch...he has been unusually protective...insisting I "relax and enjoy the ride".
He no longer drives at night...it's something that confuses him most.
So, I have a new role behind the wheel with him beside me in the passenger seat.
He opens my door for me as I scoot in behind the wheel, and insists I wait till he comes around to open my door for me to exit...his mom and dad raised him right.
Last night was out granddaughter's birthday dinner...it was pouring down rain and the night was pitch black on old 2 lane roads with paint lines so worn I couldn't see them with the glare.
I had a death grip on the steering wheel...he was nervous beside me... he used to maneuver these conditions with such ease...but I was far more nervous than he...feeling so inadequate...so inexperienced...so out of place...and began having a private pity party...nearing tears.
No!!! I'm not going to think like that!!! I am blessed with my Bill here beside me, giving me a heads-up with the low places where water is beginning to puddle deeply over the roads...
I would slow down as he gently talked me through...till the next one...and the next.
I can do this! We will do this "dementia thing" well and with grace, not pity parties!
And so I go...maneuvering through this new life of mine...in a complete paradigm shift...refusing to give up in the precious moments we have...savoring even the white knuckle ones.
I am still falling more deeply in love with my Bill every day...
he has so many new dimensions surfacing.
I am simply adjusting to life's big twists and turns, covered in God's wondrous grace that heals the hurts so quickly these days.
Life's circumstances are rarely what we plan or sign up for...but in them...God show's up in our reality!!!
Thankful today for all of it!
My Bill had cataract surgery last month...the visual clarity and 20/20 vision without his lifelong thick glasses has been HUGE!
He was a key note speaker in Chicago a week and a half ago, if I had not been with him, I'm sure that the 2 hour drive in the rental car, even with a navigation system would have been a stretch for him.
The balance of his independence with driving is one of my greatest challenges...he has times where he yells at me when he doesn't comprehend my directions...while I pray for calmness and know it's not him, it's the disease.
He has been requested to prepare proposals for more contract work, although the income would be a blessing...not sure how capable he is to complete his work in a timely manner...everything takes longer at his computer...
I have an extraordinary weekend ahead...desperately needed...I have taken today and tomorrow off to try to have everything prepared to ease my Bill in the Nest without me.
My Bill is my #1 supporter, never even hinted at holding me back from anything...consistently encouraging and cheering me on in whatever direction I sense God leads.
Life has changed though...he is a bit anxious...more often cross with me than not...desperate to be independent, but the last week or so, he has slipped away a bit further...the disconnection is palpable...it's part of the disease that makes one perceive the agonizing progression of the person you love, distancing...heading to a place where you are left behind...someone who is slowly changing into someone a bit unfamiliar...yet present and accounted for.
Honestly, substitute teaching helps me get away from his moods as he desperately tries to have a productive day...it is so difficult to watch...I grieve for moments, then renew my mind with all the good things and smile at my days filled with blessings, taking joy in the moment by moment gifts from God from the huge to the minuscule.
My family along with our 4 grand's will all be checking up on him and feeding him a few meals...their love and support has been a God-send.
I ask for prayer covering for my Bill and me ...
A couple of rough days with my Bill. He is becoming increasingly frustrated and irritable, and I heavily focus on not taking it personally...
I feel quite alone and isolated as he and I breathe, eat and sleep together as "one"...feeling isolated from him at times...his mind goes where I can't follow.
Am sitting at my desk for the day...first period is planning, so I can let you in on my morning thoughts.
He had a rough day yesterday and a rough night last night.
I was feeling guilty that I accepted a substitute post today, thinking maybe I should cancel and stay home...wondering if he ate too many carbs yesterday while alone at home...he broke one of my mother's vases and sweetly told me, apologizing and showing me that he had placed it and the broken pieces on top of a paper towel with a circle drawn around the shards saying "OOPS" and "caution"...(used it often, enjoyed it thoroughly, but he is far more precious to me than any Lenox vase)...and this morning when I reached for him, he panicked and jumped, telling me to put my arms down, the ceiling fan would cut them off.
I calmly reassured him that the ceiling fan was a couple feet higher than my highest reach, and leaned in to hold him tightly, saying
Good morning, I love you.
Then, unbefuddled (which is NOT my old "norm", but beginning to be part of the "new norm"), I stepped quietly away while he fed the cats and made the coffee to read today's devotional, "Jesus Calling" by Sara Young...I don't it read daily, switching it up in various ways to connect with my Lord...and here was the timely word, written just for me today.
God has a way of showing up perfectly on time and place, doesn't He?