Tag Archive | connecting with an alzheimers parent

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