The mother who remains

By Leslie

One of my best friends lost her mom last week. And for a brief moment, I was jealous.

You see, my own mother has a disease called Pick's, a form of frontal temporal dementia. It's a degenerative brain disease that is often misdiagnosed as early onset Alzheimer's.   

She started acting strange about 6 years ago –- forgetting her way back home from her job, mixing up the times of day, and losing her sense of personal hygiene. It later progressed to inappropriate sexual comments about my husband, an obsession with candy and an insatiable need to hug and touch any child that she saw. Now, at 63, she is almost completely incoherent, incontinent and incapacitated.   

For all intents and purposes, my mom is dead. Gone is my "kissing monster" mom who planted kisses and tickles all over us before bed. Gone is my "cool" mom who once worked my shift at the deli so I could attend a Grateful Dead concert with friends. Gone is my "scholarly" mom who got her Master's degree at Georgetown University and encouraged me to do the same. Gone is my "stylish" mom who was always impeccably dressed and could decorate better than Martha. Gone is my "classy" mom who insisted we put the ketchup in a dish each night and not put the bottle directly on the table. 

Gone. Gone. Gone.

Left in her place is the shell of a woman who needs constant feeding, diaper changes and bathing. Much like my newborn.

Yes, I have a mother still, but I don't have a mom anymore.

And so I am jealous of my friend. She can now start her grieving process and begin the journey of healing. I cannot. My pain intensifies with every diaper of my mother's I change, with every spoonful of food I put in her mouth, with every bathtub full of water I run for her. It feels wrong to consider her dead when she isn't officially. So I put on a brave face, act tough and forge ahead with what needs to be done.

But in my heart, I am always grieving for the mom that is gone while taking care of the mother who remains.

Leslie lives in northern Virginia with her husband, toddler son and newborn daughter.

Comments

[CrankMama]

So sorry you have to go through this.

[Anjali]

I can't imagine how difficult this is for you. I have so much admiration for your strength and courage.

[Leslie]

Thanks, Ladies! It is always good to get hugs, even if they are cyber hugs! :) I was worried my post was a little too honest, but I am glad it is not. It was hard to write, but it's been kicking around in my head for a while so I had to get it out. Thanks for listening! The real kuddos go to my father who cares for her night and day. Between working full time and 2 kids, I can only pull weekend duty usually. His devotion and care for her is unbelievable, it truly takes my breath away.

[Kris]

Oh, Lesley. I'm so sorry. You're mom sounds like an amazing woman. Losing her must be so difficult, not to mention being her caregiver and a mom to a newborn yourself. I hope that you are able to get some Lesley time in there somewhere.
xoxo,
Kris

[Beast Mom]

This post just wrenched me inside. The mother you remember sounds so much like my mother - a fantastic, intelligent woman. I dread the day I lose her. It would kill me to go through what you are going through, the WAY you are having to go through it in particular.

I can totally understand why you'd start your blog the way you did. God, you're so refreshingly honest.

-Beast Mom

[Maria P.]

((((((((((hugs))))))))))
I lost my mom when I was 11. I can't imagine what you must be going through though. I pray that you are able to remain strong and get through these tough times.

[Amy]

Wow Leslie. It's amazing that us dotmom's don't really know each other better. My dad has Alzheimers and from time to time I reference it on here. The hurt of losing your parent without LOSING your parent is one that can't be explained in words...but as I read yours...I cried...and I continue to cry and I cyber hug you as lame as that sounds. Sometimes I lie in bed and dream that I have one lucid moment with my daddy....to be able to tell him about his beautiful granddaughter and have him recognize me....but instead....I fall asleep and wake up to my dad...who is left here with me...and my mom who watches him go...

Thank you for sharing this with us....and thank youfor being the woman you are.

[Janet]

I am sorry Leslie.

My mom is gone and I feel your pain. I was there nursing her too when she was ill. It will never be the same again, but you will be stronger and a more pawerful woman than you already are because of the love you have with your mom and the memories you will keep. Keep her spirit in your heart, it will help you get through the tough parts. She knows you are there for her even if she can't tell you. My heart aches for you.

[Pink]

I am so sorry for you. I lost my father to cancer three years ago and while I mourned his death, I also knew that he was no longer happy in his body and no longer able to live life the way he had for 65 years. I'm sure you have it much, much worse seeing your mother in a body that continues on despite her mental condition. I can do no more than say that I am incredibly impressed by your strength.

[Robin P]

What a difficult situation you are in. Your mom sounds like she was so amazing. I laughed when I read about the ketchup. That's so sweet. It must have been so wonderful growing up with your mom.

My aunt has Alzheimer's. She's had it for about 3 years. She just turned 60. She was so intelligent and fun too. Now she is confused and scared. It's tough on the whole family who love and adore her.

I give you so much credit for taking care of your mom. I know you miss the mom that she used to be but thank goodness you can write about her and keep the good memories alive forever.