“Nothing can take away what’s happened to you and what you’ve experienced. Even if it goes away somehow, it’s still there. It’s still what you are.”
The line comes from the film Away from Her and I think it accurately sums up every caregiver’s experience—no matter if you’re the child, husband, wife, sister, or brother coping and dealing with a demented loved one alters you—it alters your DNA. I’ve said this before and I think you can only appreciate that statement if you’re in the the throws of this disease.
I hate this disease.
I hate what it has done to my family.
I hate that it has killed the woman I once knew as my mom.
I hate that I feel completely alone and orphaned.
A recap: Mom is back home. Because she was having a difficult time adjusting to her new surroundings, the home recommended she go to a geriatric psych ward so her medication could be regulated, adjusted and a happy balance found. Four or five strong psychotropic drugs and her doctor advised us to consent to shock treatment because she wasn’t eating. My dad stood up and removed her from the unit. And here we are.
I want the ride to stop. I want to get off this vomit-inducing, roller-coaster ride called DEMENTED and run far away. After this latest incident with my family, I took a few weeks off to get a grip. Thing is, I just don’t want to do this again. I don’t want to take her to church and watch her spit or yell at other congregants to move over so she can sit in the front row. I don’t want to have to physically restrain her because she will from time to time jump out of her seat and into the aisles at church to hug her priest or try and give Communion. I don’t want to fight with her at Fry’s. I don’t want to talk to her because it is so difficult and tiring.
I don’t want to do this anymore. I just want it to stop. Now. Today.
I think I can say that I am at a point now where I have accepted and grieved the loss of my mother. I know my demented mom loves me very much—she may not know my name, but she knows that I am her daughter. What that means to her, I have no idea—and it doesn’t matter, she still loves me and I struggle with that. Some days, I wish she would just forget about me. That’s stems from my own crude selfishness. The thing is, I don’t have words for what I feel towards her. I know I am supposed to say that I love her… yet I wonder, if she died tomorrow, would I cry? If I don’t shed a tear does that mean I don’t love her? Do I love her? Would I cry? Would I mourn still? Would I regret? I can’t answer that. I think about sitting in the pew at church, looking at her coffin and hearing her friends and family cry behind me. As I observe myself in this scenario, I am just sitting there with my father on my right hand side. We are just sitting there together. Looking at the wooden box holding this woman who in the end drained us both.
I have lost of both my parents. Her to the dementia and him to the difficulties and struggles of her disease. While I am OK being alone and in my head (I’m an only child, I had to entertain myself… a line I remember my dad telling me often: “you have to entertain yourself, Kath”), there’s a part of me that craves a deeper family connection. That’s why I go to my best friend Natalie’s mom’s house on Christmas Day. One big family and they all laugh. I love to laugh. There was never a lot of laughter during the holidays at my house. Holidays typically consisted of just the three of us—and for me, there was an element of sadness attached to those days. Things were so serious and glum. I won’t get into the whys because that is an entirely different blog about another parent’s demon.
I don’t know if some of the loneliness I feel these days is curable. For me, loneliness sparks my desire to run away. Even now, I am plotting, albeit a little more responsibly, trips away to clear my head and just be. I love Europe and I want to go back—I find comfort in those old streets and buildings. I also lust after freedom, especially now when I feel bound by my role as the only daughter and child of my demented family.
And that is my constant internal struggle: freedom or family. I have no idea what I want, except that I want THIS to stop.
>>Hands image: http://www.flickr.com/photos/stevenfernandez/2297680342/
>>Lonely girl image: http://www.flickr.com/photos/dirty_dan/3377763289/
I have the feelings that you describe so often. I describe it as the living-grieving process of losing my mom. I’ve already lost her, so will I feel something when the end finally comes? Will I cry? Do I have any tears left?
I also relate to the attraction to families that are whole. I see a movie about one. Or I spend a holiday with one, and I see that – that’s what it’s supposed to be like.
Running away is my only solace. Running away is my favorite phrase.
I can so relate. I was just thinking today that we keep having these crises, and I keep grieving. But she’s not really dead. And I wondered, after I’d lost so much of her, so many times, will I grieve again when she’s gone? Right now, I know the answer is “yes”, but I couldn’t guarantee it.
I love your blog.
i can absolutely – wholeheartedly – relate to everything you’re talking about, saying – writing about, my mom had dementia, and it literally tore my family apart. it is an awful, horrifying, uncompromising disease. my mom went through a period where she would howl – scream – for what felt like days and went on for fifteen, twenty minutes, and then she would calm down, and then scream again. she lived near my brother in NM, and visiting her became both unbearable emotionally, and very, very difficult (travel wise, I live in NY & PA).
my heart goes out to you.