Being Strong Is Hard

stronglikeabull

*Warning, reader discretion is advised.

My heart is breaking.  I just want to sob and be held by someone who cares.  I want to cry freely without worry and be comforted by someone who doesn’t need for me to be strong for them.  It can’t be fixed what I’m enduring.  I don’t want you to fix it.  I just want to be protected for a few minutes, be held and loved for who I am and to be comforted and not have to comfort someone else for awhile.  Is it too much to ask?

Tears fall, unbidden so much these days.  I’m not a really pretty crier either which doesn’t help.  I’m the gal who gets a red nose and blubbery.  You know that type that doesn’t cry often, but when she does, it comes from the depths of her solar plexus in big heaps of sadness?  That’s me.

Although I’ve been known to get quietly teary on occasion at a movie, at a tender moment, when the beauty of life hits me in a certain way or when I look at my once vibrant Mama and know that there’s a little vacancy now behind the eyes that she’s trying desperately to hide and I’m trying so hard to not see.

Life’s just not easy these days.  I miss so much that’s not mine.  I need a friend to lean on and I’m really alone.  It’s hard to take on all of this by myself even though I have help.  It’s frustrating, heart-breaking and I feel like I’m in solitary confinement with the weight of the world on me.  I’m just so darn sad and alone.

I hate this.  I hate feeling so alone.  I dislike feeling like I need someone to hold me because I know there’s nobody.  On one hand, I know I’ve got it.  I can do this.  I’ve had to deal with more than this instance.  On the other, I’m tired of cleaning up everyone else’s messes and I’m frustrated with their ability to just hand over everything to me as if I will always pick up the pieces to make it right for everyone else.

Sure, I can find peace within myself and peace within the stillness.  But I want to be coddled for a few minutes.  Rock me Mama in that rocking chair.  Make it all go away for a few minutes please.  I wish you could do that again for me, be my Mama…and let me be a little girl if only for a few minutes…it would be so nice…take away the boo boo, kiss me, snuggle me and remind me that you are powerful and that I am protected.  Pretty please?

Shine On!

xo

 

Going With the Flow

goingwiththeflow

With Alzheimer’s and Dementia, we’ve learned to go with the flow.  No sense in trying to forget that we aren’t really in control anymore.  Like the river above, many times we are flowing in the thick of the white water, dotted with boulders which stop our flow and cause us to swirl around certain subjects, over and over as we get caught up in that way of thinking.  And then snap!  We are freed again to continue on our way until the next one snags us.

But like the river, our days keep moving.   There’s nothing like a little nap to refresh Mom’s tired brain after a long day.  It suits us both when she goes into her room to lay down for awhile.  To be honest, I think we both need a break from each other.  The silence that ensues for a precious bit of time does us both good.

I know the disease is talking sometimes and it’s not really her.  I am sure that may sound strange to you, but there are times that the words that come out of her mouth are so foreign to the Mom I know and love that I know it’s simply the disease talking.  I sometimes refer to it as Mr. Hyde for those words can be hurtful and never would she ever intentionally hurt us.  She is always a kind, gentle, Southern Lady first and foremost.

I’ve learned to redirect as much as I can when the going gets tough.  Lucky for me, I have 2 cats who have a 6th sense to appear and helpfully distract us when we get too stuck on a sticky subject boulder.  Their antics never fail to bring a smile to her face and to allow her mind to let go of her thoughts and concentrate on the giggles they always bring us.  In addition, my kids are very intuitive and find little ways to redirect as well when I’ve run low in my bag of subject changeable tricks.

All in all, we are in this together I keep reminding her.  Sissy, Mom and me ~ the three musketeers ~ all for one and one for all!  That’s what life is all about ~ love, laughter and connecting with each other!

Shine On!

xo

 

Mom Talks About Living With Alzheimer’s

momtalksaboutlivingwithalzheimers

During times of lucidity, Mom and I talk about what’s going on and how she is feeling.  She expresses herself very well during these conversations and what she explains to me breaks my heart.  I can’t imagine how difficult it is to be cognizant that your mind is not working as it should and have little control over it.  Instead it controls you with an iron fist.  Below are some excerpts of what she’s told me.

“I know I am losing my mind.  That’s the frightening part.  I think if I could just lose it completely, it wouldn’t hurt as badly because then I simply wouldn’t be aware at times like these that I am not thinking the way I should, or the way I want to these days.  I know it’s easier for M because she’s turned that corner.  She’s happy where she is.  She’s not wishing that things were different.  She’s at peace.  I want to be at peace.  But I know that when I am at peace, I won’t really be in my brain anymore.

It’s difficult.  Words don’t come out right.  Sometimes I can’t remember what I’m going to say or remember a word that I’ve known for years.  I get easily frustrated.  I do dumb things.  I am as nervous as a cat all the time.  Afraid of making a mistake so that you know that my mind isn’t working.  I try really hard to make sure that I don’t say dumb things and sometimes when I see your face, I know I’ve said something dumb but for the life of me, I have no idea what I just said or did.  But I feel badly that I messed up.

It’s scary because my mind controls me.  I live in fear.  I live in the past.  I can remember my Daddy and my childhood better than I can remember yours.  It saddens me because I know I loved your Dad, but I can’t remember what he looks like anymore or how he was.  How can that part of my life just feel like it was erased?

Honestly, sometimes I think you are my sister or my mom.  I know that sounds crazy but because you take care of me, I think you are someone else and not my daughter.  I know this is a huge burden to you to care for me and I never wanted to be anyone’s burden, especially my child’s.  I just long to stay in my bed and sleep.

I try to do crossword puzzles and word finds to keep my brain functioning, but I can’t remember the answers so I have to look them up every time.  It’s exhausting and frustrating.  It’s like the word is on the tip of my tongue but I can’t reach it.  Sometimes later the word comes to me, unbidden and sometimes it never does.

My brain feels like it is full of twists and turns and I never know how to get out of the labyrinth.  I’m stuck in a maze and can’t find a way out.  I keep trying.  It just doesn’t happen.  How did I get here?  I look around and I am sad.  Sometimes I don’t even try and I just give up.  That’s when I go to bed because there I feel safe.  I just lay there and look at the ceiling and try to figure out how I got here.  Lord Help Me!

I can’t hear very well either.  I never realized it before but now I know that sometimes I’m not listening when people talk with me so I have no idea how to respond.  So if they are smiling, I smile.  I’m a good mimic.  When we watch a tv show or movies, I can’t really focus.  I need the tv louder so I can hear the voices and follow what they say.  My vision is a bit blurry too even though I had that surgery whatever it’s called to fix my eyes.

It’s like I can’t focus for long.  Too much background noise in my head, too many weird thoughts that blur everything.  I get off track quickly and easily and it’s getting harder to get on track again because that train has taken off! (giggle)  Then I can’t pick up from where we left off in our conversation or in the movie or the book because I have no earthly idea where I was.

I get lost sometimes so I only want to be in my home where I know where things are.  I don’t like to eat by myself.  I don’t remember what foods are so that’s why I want whatever you are ordering.  I’m afraid to make a decision because I just don’t know, I just don’t remember if I like that food.

I know my tastebuds have changed too.  I need more salt on everything so I can taste it.  I love sweets but then you already knew that.  Daddy had a store with candy and we grew up on candy all the time.  I get full pretty fast.  My stomach is always gurgling.  You keep telling me that it’s because I don’t eat, but I’m already full before we began.

I’m not trying to be difficult like a toddler.  I am doing the best I can with whatever I have at that moment.  I feel guilty that I’m frustrating everyone around me so I’d rather be left alone so that I’m not a burden and I don’t have to feel badly that I am putting everyone through this.  But I know I can’t take care of myself anymore and it makes me angry that I can’t.

I look in the mirror sometimes and I can’t believe that’s me.  When did I get so old and wrinkly?  I know how old I am but golly, in my head I still think I look like a young girl.  It’s just scary to be me.  I’m frightened all the time but every once in awhile I get to laugh.  I love hugs.  I love to share songs with you.  I’m just grateful when your kids come in to say hello and hug me.  I want to give back to you but I have nothing to give except my love.

I tell you I love you all the time because I don’t want you to forget it.  And I don’t want to forget you.  So bear with me.  Thanks for being here with me.  I love you.  I love you always and forever.”

Shine On!

xo

Hold Onto the Rainbow

holdontotherainbowHold Onto the Rainbow

Being a caregiver for loved ones with Alzheimer’s and Dementia, it’s a daily struggle for them and for us as caregivers.  Some days are harder than others.  Some moments are stormy and then when the sun breaks through with a glorious rainbow, we are rewarded with a real time reality moment of lucidity with a loved one ~ whether it be a shared trip down memory lane or a moment of recognition, a shared laugh, even a hug with the knowledge that we both know who we are.  For me, it’s the rainbow throughout the storms that their minds are enduring.

I feel compassion as I take time to observe how they live in the world of their minds.  It’s frightening when your mind doesn’t work as it used to and it’s beleaguering the point when I say it over and over that I can’t imagine how hard it must be.  We go with the flow here.  Allowing whatever comes to her mind to flow and I try to ride the wave even when the tsunami hits us.  Dogged determination takes over common sense and many times it’s wasted breath to explain.  Changing the channel, getting up to do something else or pausing to change the focus does help sometimes, but at others, it changes nothing and she perseverates all the harder on the thought at hand.

What I live for are the stolen moments of rainbows through the storm:  the laughter which releases anxiety, the connection when I’ve surprised her with a visit from an old friend of hers, the banter which we share when we travel down memory lane.

The storms pass, but get longer as the days do.  Riding this roller coaster of brain firings and misfirings is hard for us both as we travel down the end of the journey.  She longs to crawl back into my womb at times and it saddens me.  She is not my child by birth, yet she’s now my child.  If I were able to carry her, protect her and keep her with me safe and secure, I would try, but it’s not an option.  To release her as she wishes at times would be beneficial I believe, even though it saddens me a great deal.

I long for the carefree days of youth and vitality which are no longer.  I long to be held and protected myself, but I only have my own arms to do that for me.  So I take moments of peace whenever I can, to hold and to hug myself so that I can continue to have strength to do it for her as well.

It’s hard to watch a loved one’s mind deteriorate while they sometimes understand what is happening to them.  All I can do is be there for her which I am doing, heart, mind, soul and physically, seeing to her needs and allowing my own a back seat while we carry onwards to a destination which makes no sense to either of us.

Thanks for reading my blog today.  I just needed to write, to mourn, to have a quiet moment to center myself again so that when she awakens, I can be fresh as a daisy, upbeat and filled with loving kindness and empathy in order to find the rainbows whenever I can through the storms.

Shine On!

xo

 

 

Dealing With Alzheimer’s and Dementia

dementia

Our minds work in mysterious ways.  What triggers some utterances from the mouths of someone with Alzheimer’s disease and dementia can be mind-blowing to the listener as I’ve learned first hand.  The associations that they make and willfully say aloud can be very hurtful and they are not aware of the power of their words nor the sadness that it evokes to the recipient.  I try to figure out what makes their minds tick the way they do and I try desperately to unscramble the mixed messages, but to no avail.  It is heart-wrenching to witness and even harder to comfort myself and them.

I feel utterly alone.  The worst part is that they don’t remember what they say to me.  I can’t explain to them why it hurts.  I can only change the subject and move on, even when my heart is heavy with sadness, hurt and pain.  They forget what has been said when I change the subject, but I continue to remember and try to put on a happy face.  But the pain digs deep into my soul.

It is hard to manage and be a caregiver to someone whose mind is not working properly and I have two of them at present.  I’m learning the hard way to go with the flow, to deflect conversations and to change subjects quickly in order to protect myself.  I bite my tongue…a lot!  It isn’t easy.  It’s like I’m on edge during every conversation as I do not know what will come into their minds and out of their mouths.  It changes moment to moment, sometimes circling back to reality, but many times, there are misunderstandings as their brains fire and connect or disconnect at a moment’s notice.  I think it would be easier if they weren’t family members for then I wouldn’t feel the pain of the stings or hold onto their thoughts.  I would just let it be.  I would be able to rearrange the conversation later in my head and remind myself that it’s not about me, that it’s simply the disease talking.  I wouldn’t take to heart so deeply what is being said.  I wouldn’t get caught up in their confusion.  I would simply be able to redirect without trying to explain myself or reiterate for the thousandth time what the truth is or reiterate the lies that a loved one is resting instead of allowing their pain to hit them again and again.

It’s exhausting.

For them, for me, for our family, for the healthcare workers.

So today, please send out a prayer of support and healing to all who care.

Shine On!

xo

Ten Things to Tell a Special Needs Mom

The Presents of Presence:

This bears repeating…Happy Mother’s Day to All the Moms out there…you are special, you are loved and you are appreciated. Thanks Kim for your heartfelt post ~ I love your honesty and your dedication to being the best Mom to your 2 sons! You shine!
Shine On!
xo

Originally posted on Autism Mommy-Therapist:

Sep11155

Eleven years ago my husband and I entered a developmental pediatrician’s office with our then seventeen-month-old son, Justin. We were both nervous and resigned, anticipating, and in some ways welcoming, the autism diagnosis we were sure our boy would merit. Four years later we would retrace our steps in a different state with our second son, Zach. On this occasion we were much less scared, even eager to get a diagnosis to help us to access services. It wasn’t that we were less concerned about the progress of our second child. It’s just that by then we’d been doing the “autism gig” for the length of a presidential term, and we had a pretty good idea of what to expect.

Those four years had taught me indelibly what it means to be a special needs mom.

I learned so much from my eldest child, and then again from my youngest…

View original 282 more words

How to Avoid Criticism

Criticism

 There is only one way to avoid criticism:

do nothing, say nothing, and be nothing.

–Aristotle

Life is full of twists and turns.  Don’t be a lump.  Do what you feel is right in your heart and allow the naysayers to chatter.  Hold your head up high.  Be kind.  Be loving.  Be you, loving beautiful you!

Shine On!

xo

 

 

 

 

 

 

 

 

 

 

 

 

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