Dance Party!

I LOVE to dance. Yes. My friends from high school, college and young adult years know this to be a truth.

Tonight, I decided to dance. An iPhone, a Playlist and AirPods created the perfect solitary Dance Party. Anyone peering through my uncovered windows saw a crazy woman in her PJs bouncing around with her arms swinging wildly about her.

And here is how it went down!

AirPods are really the best!

Sample of Playlist with lots of oldies and some inspirations from my kiddos

Within 14 minutes my heart rate was up to 147 - wow ...

Fun Oldie! https://www.youtube.com/watch?v=4e-5oMa_hkk

Man in the Mirror: Make a Change, Make a Difference ... https://www.youtube.com/watch?v=PivWY9wn5ps

Uhmmm ... there I am dancing away in the bedroom ... until Husband went to bed ...

Look at the BPM and I have danced 1.33 miles in 24 minutes - ha!

Love Grows (Where My Rosemary Goes)https://www.youtube.com/watch?v=y1EpaboCERg

Slowing down with my FAV https://www.youtube.com/watch?v=VOgFZfRVaww

One Fine Day - Who does not love Carole King? https://www.youtube.com/watch?v=hJz6SGym0go

Cooling down ...

And ALL my neighbors probably think I am a doofus at this point since I have moved to living room with windows everywhere.

Coming Around Again ... the lyrics ...  https://www.youtube.com/watch?v=c0A7jAVDPJU

These rings are my motivation - go figure.

Who knew you could dance 2.2 miles?

Coming Around Again ... and the lyrics ...

But if you're willing to play the game
It's coming around again
So don't mind if I fall apart
There's more room in a broken heart

And I believe in love
But what else can I do
I'm so in love with you

I know nothing stays the same
But if you're willing to play the game
It's coming around again

I know nothing stays the same
But if you're willing to play the game
It's coming around again
https://www.youtube.com/watch?v=c0A7jAVDPJU

Good Night ...

Reflections, Good News, Help

REFLECTIONS
When I wrote previously about living life in the moments, it was not meant to be some cheesy sentiment. It was meant to convey a rather unstable life existence. Yes appreciating a good or even a spectacular moment is desirable. And understanding that a down moment is not permanent is a survival tactic. However, the goal is to perhaps have more middles than high and lows combined? Emphasis on the question mark.

I talk to other people and many of us seem to be working through something or many somethings. For my family and me, we have had allot of trauma hit us since 2012 ... just one thing after another. And more is on the way. I wish things were different. I wish these next years where those glory years of kids forging their own lives and us shifting into the ease of the empty nest. Years to heal from the previous challenges. But that is not our destiny.

Even with all this doom and gloom, I am beyond grateful for my family, my friends, my freedom, my life, my career and my experiences. Perhaps my existence is defined more by highs and lows. This is how life has been since I was four years old and my trajectory may even be a self-fulling inertia. And those in my wake are swept along with the highs, the middles and the lows. And that can feel chaotic and awesome and difficult.

Great visual of my life. First week of January was in the middle where I was on vacation and enjoying the time away while also managing a few challenges. The second week I was motivated and trying to introduce more self-care. Then I cratered on Saturday the 11th. Today I am trying to recover.

VERY GOOD NEWS
Husband got approved for Social Security Disability Insurance (SSDI!) And we got the best possible outcome. Here is my PSA portion of the the post. Early Onset Alzheimer's is a Compassionate Allowances status thus the standard for approval is expedited. The variable was more around begin date with a five month waiting period. Fortunately for us, Husband's benefits were approved to start May 2019 thus we received back payments and his Medicare two year waiting period starts on that date as well. The SSDI is equivalent to his full (not reduced) earned Social Security.

Minors are also entitled to about 50% of the benefit as well. So after a detailed application process for Husband, we must now go IN PERSON to the Social Security Office and apply for Youngest Son. That appointment is on February 5th. It took a trip to the Social Security Office, online research and an hour on hold to secure the appointment.

And Husband must now wait TWO YEARS for Medicare thus he will be eligible in May 2021. This is a cruel, ridiculous, horrible, awful, mean policy. A government approved DISABLED person cannot get health insurance for TWO YEARS. Is Congress just hoping they will die? Seriously what is the point of the TWO YEAR waiting period? CALL, WRITE, TALK to your Congressman ... please.

HELP
We have had so many calls, messages and expressions of care and love. We appreciate the outings, walks, advice, introductions, references and meetings. Our hero this week is the trusted friend who spent hours and hours researching and filing all our SSDI paperwork - I am so thankful!

I have created a Plan with 45 actions to get our affairs in order and get things set up for our new normal (sounds nuts but it is real!)  Some immediate needs include:

• Weekly outings with Husband to museums, lectures, movies, volunteering, fun events
• Four meals over 2 weeks while I am out of the country (Feb 3, Feb 6, Feb 10, Feb 13)
• Geriatric doc referral - has openings, takes BCBS and will treat 60 year old (this is a seemingly an impossible ask - every path we gone down has not worked out - HUGE sigh)
• Walks with me ... text or PM me with an invite!

The LO and The Caregiver

In our new world, in the group we now belong, in the sub-culture of millions, my Husband is referred to as LO. LO is Loved One. It is a kind and gentle reference. Early/Younger Onset Alzheimers diagnosed does not roll out easily for so many reasons. And I am now a Caregiver. We have assumed these monikers unwillingly.

As the LO and the Caretaker, we are both overwhelmed in different ways.

For my LO, every day and every moment must feel overwhelming. The things that define him are there in some opaque fog that clears in random and unexplainable moments and other times completely blocks his view. And the fog will get denser and denser and denser over a timeframe that we have absolutely no way of predicting.

For me, the Caretaker, I am encased in a invasive fog that seeps into every crevice of every day.  It is odd that I forget the ever-present haze is there sometimes and I talk and make plans like our life is the same. Then I remember. And I try to corse correct and I feel sad and confused in that moment.

I want to be a great Caretaker who helps my LO in all the ways he deserves. I just do. But I am finding that it is a full-time job and I do not have full-time hours available. And that is a terrible feeling. So I am attempting to gather a group of trusted resources to help. Trusted resources is a very broad descriptor for doctors, institutions, government agencies, experts, organizations, friends, support groups, hired assistance, family, books, websites, community support, lawyers, financial advisors, other Caregivers, etc. And help is also a broad descriptor for all the things the entities on the trusted resource list would do.

And every person who knows about this disease reminds me to be my own Caretaker. It is important they say. I say I know.

I love my LO. And this is hard.

Recommended by a trusted friend so I downloaded to my iPhone and read half this week ... not easy reading.