2920 Days and Counting……. Or How Time Contorts Your Soul

When it comes to dementia and demented events, there are very few things that actually disturb me anymore…………….. or, I should say, disturb me for extended periods of time. After all, I’ve been dealing with my mother’s decline for eight years or 2,920 days…………………………….. that’s a long time to get used to the grotesque. And everything about dementia is grotesque. I’ve seen things, heard things, smelled things that no child should ever have to experience……………… and no matter how old you are, those wounds, that trauma that bombards your nervous system, your psyche, never goes away…………………… it may get dull with time, but it never goes away for good.

I remember when my mom was taken to the ER before her month-long stint at the geriatric psych unit, and they had to test her for a UTI by inserting something into her urethra…………… but they couldn’t give her anything for the discomfort and I couldn’t explain what was about to happen because she no longer understood my words. The nurses made me leave the room; I could hear her screaming from down the hallway…………………… I think I almost threw-up, crying, feelings of guilt, regret, contempt, anger, fear consuming me alive……………… and then they were done, she was OK; still, those are the scars that never go away; but you have to endure, you have to get through it, you have to put it behind you, you have to prepare for the next trauma because it’s how you survive……………….. it’s the only way you survive……………… it’s the only way to keep yourself from cracking.

Thankfully (although I never hold my breath…….. glass half-empty, remember?), we’ve found some peace lately……………… her new home has had a calming effect on both of us…….. of course, as her disease progresses, her ability to figure out who I am comes and goes…………………. most days, she knows me or at least knows my face…………………. she smiles, she yells, and, in this case, that’s a good thing because it means she knows I’m someone important in her life………………. I hope she knows I am her daughter. I like to think she does.

But we’ve had a few days where she just stares at me.

I accept the fact that a day will come when she will no longer react to my presence. I accept that and I don’t think it will crush me………………. that’s how this disease works. I can’t change that. I can’t stop it.

I have to accept it and move on. I think I have.

I have prepared myself for that………….. truly.

I had not, however, prepared myself for what happened the other day.

I went to visit my mom one morning and she was especially alert……………. these are great days because they are so infrequent. We walked, sat, “talked,” held hands, hung out……………….. it was finally time for me to leave, so I took her to one of the rooms so she could cool off and watch TV. She walked in, turned around and saw me walking away towards the nurses station……………..

She started to follow me.

This is not an especially unusual event………………. she’s tried to follow me before; tries to catch-up………………. a heartbreaking act in itself……….. but most times, she either goes in another direction or is redirected.

As I walked out of the main building, towards my car, I looked inside………………… bars dividing us………………. she stared at me. I stopped. She stopped. Eyes locked………..eyes-wide open. Was that in my head? Does she see me? Does she know? Has the cloud lifted? Is she thinking, “Where am I? Why am I here? Why is my daughter out there? Why is she leaving me here?”

I got into my car and drove to Starbucks.

BecauseĀ copious amounts of coffee help me unwind.

>>Photo by Meredith Farmer

6 Comments

  1. It’s so difficult to have to walk away after a visit … logically and rationally, you know you are doing the right thing, but it still pains the heart.

  2. kathie, thank you for your willingness to share your journey.
    a friend of mine, candice, c. courtney, recently completed her book “healing through illness, living through dying: guidelines and rituals for patients, families, and friends” (see http://www.healingthroughillness.com). she told me about resources she thought i might find valueable for my work in behavioral health. these include 2 books by Pauline Boss: “ambiguous loss” and :loving someone who has dementia.” i’m guessing you are aware of pauline’s word and would like to hear your impressions of her work.
    love & light to you and your family.

  3. On September 9, 2011 my mom fell, walking her dog. My mom broke her hip and cracked her head. Drs focused mainly on hip and stapled her head together. Well “all the kings horses and…. Couldn’t put mom together again. She became someone else… She was lost, somewhere and for nearly a year we spend every day trying to just breathe without pain. My sister, brother and I have learned more about dementia from head trauma, than we’d ever wish in our wildest nightmares. And how the dementia is a moment by moment glimpse into the person that is our mom. We know where we are headed. Our children have suffered the pains of losing their grandma to this disease and losing their parents to the worry, the sadness and the “long goodbye”. We breathe, we gather and we love . The anger resurfaces but it only makes a devastating situation, worse .

  4. This is so my life. I treasure my little moments with my Mom that seem almost normal with her….. they become more and more rare. …..Better coffee than vodka. Wonderful post.

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