The House of Cards

Living with the demented is like living in a house of cards; fragile and defenseless against any wind, even the slightest breeze can bring the house down. 

It's easy for a Care Giver to feel as though we are walking on a ceiling of glass, waiting for it to break with the weight of our load.  Care giving is difficult because no one really seems to appreciate what you do.  The main reason that it becomes imperative to have an ego box at your door.  Our duties becomes expected because we've always done it.  No glamore, no pay and no life... this appears to be the life of a care giver. 

Why the hell do we do it then?

I can only speak for myself.  It's because of love.  Love for my mom and love for myself.  I feel honor in helping my mom, not all the time though, I'm no saint.  I do strive toward being "saintly", why not?  It's good Karma and it's just as easy to be nice as it is to be an ass hole.


Navigating through a demented world, it's our responsibility to keep life together for ourselves.  The challenges of balancing our lives while watching a parent move closer toward infancy, closing their circle of life before they take their final curtain call, can often suffocate the care giver.  I know.  I've been there more than once.

Each time it happens, I am forced to reexamine my beliefs, things that I believed to be true... things that were clearly evident as being false, if only I had allowed myself to see with my eyes and not with my heart.  But, life happens and each blip on my journey with my mom makes me ask questions of myself.  I look for answers and solutions, looking outside of the box and looking deep within my soul for a road to peace and happiness. 

Communicating with the demented mind is the most difficult aspect of care giving for those with mental imparement.  It's not only a challenge for the care giver to understand what the loved one needs; the patient has a challenge with self-expression. 

I would imagine it's the frustration that a baby might feel, not being able to tell their parents what they want, it appears similar for my mom with dementia.  Some days she tries like hell to tell me what she wants but can't find the right words.  She will call her grandson her nephew, her brother her son... no rhyme nor reason, just a problem with words. 

Finding words to express the self is a problem that seems to scare folks when communicating with the demented.  Our minds expect a certain word or phrase but it's not delivered, causing our brains to twist and stop.  To me, communicating with my mom is akin to ones brakes locking up and sending ones car spinning out of control.

The more that my mom can't find her words, the fewer visitors she receives.  No one calls her on the phone anymore.  It makes my mom cry, she's waiting for her family... they never come.  She misses the kids she never sees or talks to.  It's tough when she's crying, asking me to find them because she believes that they need us, that they are in trouble.  It's these little exchanges that are toughest on the care giver. 

Like a parent, we want to stop our loved one's emotional pain.  We want to make it all better, just like they used to do for us, but in this instance, we can't.  We can only control our actions.  We can't make anyone do anything, regardless how much you believe that if the siblings got involved our parent would be happy. 

The lesson that I learned is ignore your brothers and sisters who don't want to be involved.  Trying to change their minds or get them involved is a futile effort and a waste of energy.  I know.  I cried way too many hours over the absence of my family before I realized it's stupid to cry because they are afraid to face death through the eyes of our mom.

From experience, communicating with my mom can be done.  It takes a little patience and a lot of listening.  When visiting my mom, folks need to listen to what she's saying, not the words, but the feeling in her voice.  Her tone, the inflection in her voice, all helps provide clues with how to communicate effectively with the demented mind.

Communicating is best done through the heart.  It's emotions that my mom feels.  These emotions transcend time and space, it knows no boundaries.  If someone is upset or aggitated around my mom, she will be more likely to use the wrong word to express herself.  If she's nervous or scared, all bets are off, she becomes a babbling idiot and people around her are frightened, especially her family.

Love is the universal language, especially for the demented mind.  Love is the glue that holds the house of cards together, giving it strength to weather even the toughest storm.