Aging with Alzheimer’s

Every year during this time, I start reminiscing about:
* What would I be doing if . . . ?
* Where would I be working if . . ?
* How different would my life be if . . . ?
Things of that sort.

This year, the reminiscing is a bit different and more powerful than previous years. You see, in those previous years, I wasn’t turning 60 years old in 4 days!

When I was a child and I would attend birthday celebrations with my family and extended family, there were a lot of people who turned 60 throughout those years and I would look at them and think, “GEEZ, they are old!” Now that I’m the one who is turning 60, and 60 ain’t that old!!!!

Since my Alzheimer’s Diagnosis 6 years ago, I have been adamant about living the best life I can possibly could live.
I pushed myself to continue doing the things I already knew what to do.
I pushed myself to learn new things, although a few days later, I would not remember what I learned a few days before. That was out of my control but but that didn’t stop me from challenging myself.
I pushed myself to stay socially active, or as active as I could.
The one thing that kept me active was and still is, my advocacy and the love and support I receive. (I USE THAT ENERGY TO KEEP ME GOING!)

Pushing and challenging myself, became a double-edged edged sword. By that I mean, it was good for me but for friends, some family and acquaintances, it became very hard for them to believe I had Alzheimer’s Disease for I didn’t fit the mold, their mold. I DIDN’T ALLOW THAT OR THEM STOP ME)

I have many friends and acquaintances who were diagnosed before me, after me and the same year I was and they all push to keep themselves active and in the moment. They too have all faced the same things I have and they still journey on. Sadly, we have lost some of those friends over the years.

Yesterday morning on CBS Sunday Morning, #GayleKing interviewed 71 year old Olivia Newton-John about battling her third round with #breastcancer. During the interview, GK asked ONJ this question . . . “How do you stay in the moment and stay present and not let it consume you and worry you?”
ONJ Replied . . . “Denial is really good! Newton-John laughed. It’s really healthy! But it was consuming my day. And after a time, I went, ‘You know what? I don’t know what my time is, but I need to enjoy my life. So, I’m going to eat a cookie if I want it. And I’m gonna have a cup of tea if I want it. And if I wanna have a little bit of wine, I’m gonna do that, because the joy of life and everyday living has to be a part of that healing process as well”.

What a great answer! Now I know some will say that denial is not the answer, however, I have to agree with Olivia. She is not allowing her breast cancer (for the third time) to run her life.
It’s not like she is denying she has cancer.
It’s not like those of us living with a Dementia-Related Illness deny we have it, we just choose to live the life we want to live.

We know what faces us at the end but we don’t dwell on that.
Even though COVID-19 has put some restrictions on how we socially interact with one another, we still do that.

I’ve said from the beginning of my Alzheimer’s Journey, I would not allow my Alzheimer’s to define who I am as a person. I would live my life the way I want to live it.

Did I ask for this life? NO!

Is it the life that anyone who is / was living with a Disease that caused or will cause their death ask for? NO!

Am I going to give up on Living My Life the way I want to?
HELL NO!!!

I am going to keep on living the best life I possibly can and when Friday, September 4th rolls around, I am going to continue to LIVE LIFE in the best way possible. Will I live an another 60 years? Well, YA NEVA KNOW!!!

Life is what you make of it and it’s up to you what you want to make of it.

Until Next Time,
PEACE!
B

This is Me!!!

(This blog post is NOT a review of a movie. I am using a specific song from this movie to get my point across. ~B)

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The Greatest Showman is a movie inspired by the imagination of P.T. Barnum starring a wonderfully, talented cast and an awesome soundtrack.

One day ( I really don’t remember when, ……o excuse me for leaving out that detail) I was watching it (again) and I was discovering some new things I either forgot or just overlooked during the past times I viewed the movie.
It was almost like I was watching it for the first time.

It wasn’t the actual movie that was resonating with me but rather the music. If you know me, you know how much I love music and how I use it therapeutically to assist me in ridding myself of my brain fog or just to lift my spirits on dark days.

Anyway, it was getting towards the end of the movie when “The Bearded Lady” played by Keala Settle, started singing her song, “This is Me!” As I was listening to the words of the song, really listening, is when it hit me.

The Greatest Showman - Keala Settle 'didn't want' bearded lady role | Films  | Entertainment | Express.co.uk

The opening lines of the song are . . .
“I am not a stranger to the dark
Hide away, they say
‘Cause we don’t want your broken parts

I’ve learned to be ashamed of all my scars
Run away, they say
No one’ll love you as you are

The biggest difference between those of us who are “Living Well with Dementia” and the “Bearded Lady” is, well, she’s a Lady with a beard. That’s kind of hard to miss. We don’t have any outward signs for anyone to see but when we speak, our Dementia may come out by causing us to lose our words, or just go silent. The reason I love this song is because when she is singing her song, I can feel both her pain and her strength. She was fed up being stigmatized just because of the way she looked.

At that point (and every time after I’ve listened to the song) the tears flowed, lots of tears. It was if she was singing it not only directly to me but to everyone and anyone who has some sort of disability, anyone who has been shunned or just forgotten by the public and/or members of their family, just because, in their eyes, we were now different.

The song continues . . .
When the sharpest words wanna cut me down
I’m gonna send a flood, gonna drown ’em out
I am brave, I am bruised
I am who I’m meant to be, this is me
Look out ’cause here I come
And I’m marching on to the beat I drum
I’m not scared to be seen
I make no apologies, this is me

If you have heard me speak before, you have heard me say,
“I have Alzheimer’s Disease BUT it doesn’t have me!”
I don’t allow my Disease(s) to define who I am, because in my mind, I am still me. People that really know me know I AM still me. I don’t know how to be anything else.

The reason this is so powerful for me is because I began, early on, to hear things like, “You don’t look like you have Alzheimer’s!” and “WOW, you speak so well!” or they would ask me in a sort of a hushed tone, “how are you?” or would turn to whoever was with me and ask them, again in a hushed tone as to shield the question from me, “So, how’s he doing?”

I admit, I may have slowed a bit but, as Maureen reminds me, I’ll be 60 next month so it’s a matter of aging. (In my head, I still feel like I’m 40. LOLOLOL)

I guess it would be easier if Alzheimer’s came with a scar or some sort of mark but it doesn’t. It’s an invisible disease so no one can see it and it makes it hard for some folks to accept it when we still look like we always did. The only “outward sign” we do exhibit is when we speak and we lose our words. When that happens with me, I turn to Maureen and she throws me the word and I continue on like nothing has happened but I see the look on other’s faces. It’s a look of sorrow and that’s the last thing I want people to look at me with.

As the song goes . . .
I make no apologies, this is me
!

Please remember this the next time you interact with someone who has a Dementia-Related Illness, any type of unseen Disability or a visible sign of their disability. Treat them as a person, an individual, for that is what they are.
When in doubt, ask yourself, “Self . . . how would I want to be treated if I had a Dementia-Related Illness or any type of illness or disability, visible or invisible.
If you don’t come up with the answer, “I WANT TO BE TREATED NORMALLY”, you may want to ask yourself again.

For those of you that haven’t heard the song, here is the link. as well as the lyrics . . .
https://www.youtube.com/watch?v=CjxugyZCfuw

This Is Me

Keala SettleThe Greatest Showman Ensemble
I am not a stranger to the dark
Hide away, they say ‘Cause we don’t want your broken parts
I’ve learned to be ashamed of all my scars
Run away, they say No one’ll love you as you are
But I won’t let them break me down to dust
I know that there’s a place for us, For we are glorious

When the sharpest words wanna cut me down
I’m gonna send a flood, gonna drown ’em out
I am brave, I am bruised, I am who I’m meant to be, this is me
Look out ’cause here I come
And I’m marching on to the beat I drum
I’m not scared to be seen I make no apologies, this is me
Oh-oh-oh-oh Oh-oh-oh-oh Oh-oh-oh-oh Oh-oh-oh-oh
Oh-oh-oh, oh-oh-oh, oh-oh-oh, oh, oh

Another round of bullets hits my skin
Well, fire away ’cause today, I won’t let the shame sink in
We are bursting through the barricades and
Reaching for the sun (we are warriors)
Yeah, that’s what we’ve become (yeah, that’s what we’ve become)I won’t let them break me down to dust
I know that there’s a place for us, For we are glorious

When the sharpest words wanna cut me down
I’m gonna send a flood, gonna drown ’em out
I am brave, I am bruised, I am who I’m meant to be, this is me

Look out ’cause here I come, And I’m marching on to the beat I drum
I’m not scared to be seen I make no apologies, this is me

Oh-oh-oh-oh, Oh-oh-oh-oh, Oh-oh-oh-oh, Oh-oh-oh-oh
Oh-oh-oh, oh-oh-oh, oh-oh-oh, oh, oh
This is me

And I know that I deserve your love
(Oh-oh-oh-oh) There’s nothing I’m not worthy of
(Oh-oh-oh, oh-oh-oh, oh-oh-oh, oh, oh)
When the sharpest words wanna cut me down
I’m gonna send a flood, gonna drown ’em out
This is brave, this is bruised
This is who I’m meant to be, this is me

Look out ’cause here I come (look out ’cause here I come)
And I’m marching on to the beat I drum
(marching on, marching, marching on)
I’m not scared to be seen
I make no apologies, this is me
When the sharpest words wanna cut me down, I’m gonna send a flood, gonna drown ’em out
I’m gonna send a flood, Gonna drown ’em out
Oh, This is me!


Bella, the Wonder Dog

It’s amazing what a difference a little 10lb, 8 month-old puppy can make.

It’s only been a few days but Bella seems to know her purpose. She can already detect my anxiousness, coming to lay across my lap or laying right beside me with her head in my lap, looking up at me with look on her face as if she is saying . . . “I’m right here so you can relax!” What a gift!

We’re working on the commands Deb the Trainer has already taught Bella and we are reinforcing those commands every day. We are also going to continue training with Deb via ZOOM so we can complete Bella’s training.

Bella knows she is here for a purpose and that purpose is mainly to keep my anxiousness at a minimum, to fetch my medicines when needed and replace it them when done. We will start working on that probably later this week. We don’t wan to overwhelm her or frustrate us.

It’s important that an animal has the right temperament and personality in order to fill the role of a Service Animal. It seems that Bella was destined to be our dog from the get-go. From our first interaction she was drawn to us and us to her.

Since COVID19 is not showing any signs of going away and restricting us from mingling with the public in public places, I know she will be a comfort to both of us as we navigate this Pandemic. Not being able to come and go as we please does put a strain on things and that also brings on anxiousness and frustration. I’m sure Bella has her work cut out for her.

You will hear my say, “Our Dog” and not just “My Dog”. Knowing she is a Service Dog, she has become a part of our little family. She has already made a big difference in the lives of Maureen and I and we look forward to her for years to come.