Thursday, February 11, 2010

When Mother Isn't Who She Use To Be







   My mother has dementia of some kind.  I know it and my family knows it but I'll be darn if there are some leeches out there who won't admit it and continue to use her.  I can do nothing about it sadly, not a thing.  All I can do is be who I have always been, an honest, caring daughter.

     My mother had a stroke over five years ago that left her with Aphasia.  Aphasia is a disorder that is a result of damage to the brain that is where our speech comes from.  It is usually caused from a stroke or from an injury to the head.  It impairs the ability to understand and express the use of language as well as reading and writing.  At the time her prognosis was good and she was expected to regain much of her speech.  She took it in good stride and initially did therapy for her speech.  Of course like she always does she stopped doing it because she had better things to do like shop, have lunch out with her friends and keep up appearances.  She wouldn't do the follow ups with the Aphasia Center and would lie to me that she did. She did this for years but I knew.

     My mom is all about control.  Her control and how she attempts to control her family and really the control she did with the amazing contributions she has done in her community.  She was quite a speech maker and could get almost anyone to donate to an organization or fundraiser she endorsed.  She would come across elegantly, looking straight into everyone's eyes and using her Southern charm persuade a whole room to jump on her bandwagon right then even if later they changed their minds, which most didn't.  She would have been good as a politician or even a preacher.  So it is very sad to see the woman who could walk up to a podium, without a note or prompter, speak out to a room full of people without a bit of nervousness, who now is unable to have the ability to have a simple conversation.  That was the woman they all saw in her glory days.  That was not really the mom at home with her son, daughter and our spouses or her grandchildren.

     I don't mean to speak badly of my mom but before the stroke she was not an easy woman to be around.  We have had good times but there have been one to many times where she has been an awful mom.  How many moms question the trust of their children without any justification?  How many moms tell their children that they don't love her or care about her?  How many mothers would turn an icy shoulder to her children because they didn't do as she wanted?   I am speaking of grown adult children.  None of us wished to be disrespectful towards her and held our tongues.  I eventually couldn't take it anymore when it became an attack on my daughter.  That was enough and I let her know it.  Pick on me but don't ever speak that way towards my daughter when she has done nothing to deserve the attack.  

     The best part of the stroke, as awful as this sounds, is that she became nicer to all of us.  It was like the nasty ways had been purged from her!  She became a pleasure to have around which was a nice change from wondering who she would be when we talked to her or saw her in the past.  Dr. Jekyll and Mr. Hyde was my mom.  There is more to her than one can point a finger at and she is an Oscar worthy winning actress to friends and acquaintances.

     Sadly her speech did the opposite and she began to regress.  This regression should have been a flag to her doctors but that is another story altogether.  I could somehow figure out what she was saying and translate for her.  Most people just nodded and acted like they knew what she was saying. At present she is almost unable to speak where anyone can understand her.  A word here and there that one tries to piece together in a sentence or phrase but the overall meaning is lost.  Most of it doesn't make sense because she contradicts herself constantly.  Yes is no, up is down, over is under, red is blue, Monday is Friday and we are all wrong and she is right.  Most times she has this new little laugh or a cough when she is having a hard time speaking.  I tell her to take her time and try again.  The second time may be easier or it may not.

     Today....ah today....she is bent out of shape with me because I am not doing what she wants me to.  She hates, simply hates to be told NO.  To say no is to commit Seppuku by not honoring her demands  Oddly when she is miffed her speech slightly improves which isn't good for the reason that I am subjected to her nasty side.  On one level, the level that I feel first, is that she is so selfish to think I have no other purpose in this world than to be here to always say yes to every request she bids.  The next level is the humor in the request.  I have to remind myself to see the humor because otherwise I would surely go crazy.  She sounds like a spoiled four year old who doesn't get what she wants.   The dementia part is that she won't let go of it till the request date has past.  Today's request will not happen for two weeks.  This will be a long two weeks of her calling to repeat her demands and be irritated at me for not doing what she wants. I am polite,  keep my chin up and move on in the conversation.  This is when she will say silly things like the friend we need to see is dying (they aren't), they are very, very ill (they aren't),  she is dying (she is not), she has three months or five years left  to live (she isn't dying) and how can I not do as she asks?   There is the line that we never see her, but she is the one who cancels out due to rain, clouds, sun, friends, you name it she has an excuse and then accuses me of not seeing her.  I am polite and try to hard to stay calm...because there is no use in arguing with someone who doesn't see the world like the rest of us.  She sees herself as being just fine.  In fact that is the phrase she uses multiple times "Everything's fine, I'm fine".

     This too shall pass, a favorite saying that I utter as a mantra in my head.  My mom is not herself any longer.  Life goes on and I just keep holding my chin up.  My heart aches for her loss and our loss as a family.  I choose to see the glass half full and she will always see it as half empty.  I will not let her bring me down.  I know my mom loves us and she does tell us she does.  There is so much about my mom I will never know or understand.  Ever.  But my chin is up.

4 comments:

Unknown said...

Hi Ellen, what a beautiful story. I know what you're going through, but fortunately it was my grandmother, not my mother. I know how hard it was to watch her and those around her but I can only imagine what you're going through because it is your mom. If there is anything I can do for you please never hesitate to ask or call me (389-1900). Even if you just want to talk it out to someone. My grandma had what they call sundowners syndrome and she lost her battle with it all last Saturday. I grew up with her and can remember how vibrant she was and it was horrifying seeing her in the state she'd been in for the last four years. And the very slow digression of her soul. She was the strongest woman I can remember knowing and the last thing she ever wanted was to have a stroke, so luckily she didn't have the until she couldn't really remember having them.
I'm sorry for you that you have to watch this. But I enjoy reading your reflections and I'm sure it helps you to write them. Call me if you need anything and my prayers are with you.
xoxo
Jenny

Bethany said...

This sounds so difficult. Chin up is a good thing. Hang in there.

Ellen said...

Jenny and Bethany ~ What kindness your comments were to me...to know someone else understands the sadness in seeing anyone, let alone a family member go through dementia...it is beyond heartbreaking for every person it touches. We keep watching, helpless at this point from the sidelines till the time where she is unable to have the control....and we will be there to see she remains with the dignity she should have. I can see it won't be easy and tough times are ahead.. but we'll muddle our way through somehow.

Sara Louise said...

Chin up indeed strong woman =)

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