Sundowning and Alzheimer’s Disease

Confusion, extreme confusion, often comes during late afternoon or at night for those with Alzheimer’s and so that’s why it’s called sundowning.  Lately, we’ve seen it come and go at all times of day, with no predictable time frame.

Watching a loved one fret and worry is exhausting for the loved one with Alzheimer’s Disease and Dementia and for those of us who care for them.  As the mind whirls into a vortex of unpredictability, thoughts firing at random, words tumbling out nonsensically, a helplessness sinks in and an urgency to help in any way possible to allow for peace and tranquility.

When sleep can be encouraged, it seems to dilute the chaos in their minds, allowing our loved one a little peace.  Changing the subject to one of love and beauty helps as well, but sometimes that button cannot be unpushed, the channel cannot be changed and we all whirl in the frenzy for a bit.

Have you ever experienced this as a caregiver of a loved one?

It’s not easy to remain untouched by the emotionality of the situation, let alone what is unknowingly coming out of their mouth.  Thoughts flicker, reality surges and fades and my heart breaks wide open with sadness for I cannot even begin to fathom how hard this is for her, let alone for me.

This disease is just so hard and old age, as the adage goes, ‘ain’t for sissies.’

Shine On!

xo

 

 

 

Mom Talks About Living With Alzheimer’s

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

Through the Eyes of A Caregiver

When I was diagnosed with breast cancer, I learned all about it, from researching, googling, reading, talking with others and experiencing the illness through my body, mind and spirit.  I know more about breast cancer and its effects on women and families than I ever wanted to know.  But it has made me who I am today and for that, I am grateful.  I learned much about myself and the inner strength that I have come to rely on in my life.

Now that I have two family members battling Alzheimer’s and Dementia, my research has begun again in earnest.  This time it’s not so much about the body, but more about the mind and as the caregiver this time and not the patient, my brain works overtime as does my patience.

The mind baffles me with its twists and turns with these diseases.  In my research, I came upon the video below which brought me to tears and humbleness.  As caregivers, we may lose our patience when asked for the umpteenth time the same question or when we are unsuccessfully trying to reassure an anxiety-ridden loved one whose brain is captured by a riddle.  But we never know what they are enduring as their brains muddle through moment to moment, grasping and disconnecting at will.  Their brains only deal with the present moment and that is their reality which changes.  Talk about truly living in the present and working on finding peace in every single moment!

Perhaps this will give you a little insight as it did me.  If you are a caregiver or love someone with Alzheimer’s and Dementia, please connect with me.  Just as it helped me when I endured breast cancer, I believe that as always our connections only make us stronger.

Shine On!

xo