Conversations.....

“But I want it,” pouting and putting her chin out.

“You don’t like it,” I tell her.

“But I want it.”

“Ok, here you can have it.” I said as I put the burrito containing rice and chicken and beans in front of her.

“YUCKY!” as she spits out the rice.

Or there’s this one:

“I don’t want to. You can’t make me!” she stomps her foot.

“Put your shoes on. We have to go to the doctor.”

“NO! You hate me!”

“I don’t hate you. I want you to stay warm.”

“I am NOT going!” as she attempts to get back in the bed and under the covers.

How about this one:

“What are we doing today?”

“Running errands,” as I help her get her jacket on.

“Are we going to the doctor?” she asks with fear in her voice.

“Nope, just the post office and grocery store today,” as I zip her up.

“Oh. I am not going to see that one doctor ever, EVER, again.” She sticks her chin out stubbornly.

“No doctor today. No worries. Now let’s get out the door.” As I try to usher her out the door.

“Promise?”

“Yes I promise, no doctor today!” I try not to lose my patience.

And of course there’s this one at least once a week now:

“Can I eat now?”

“You just finished eating. Are you still hungry?” I offer another orange or a cookie.

“I want soda. But the one I like.”

“It’s right here; and it’s the one you like.”

“Are you sure? I will know you know.”

“Yeah I’m sure it’s the one you like.”

She takes a drink and smiles. “Yep that’s the one I like.”

I smile too.

But today there was this one at the breakfast table:

“Who is that?”

“Who is who?” I ask.

“Who’s that?” pointing to me across the table.

“It’s me, Amy.”

“Who is that?” she asks Dad.

“Put your glasses on mom. Then you’ll be able to see me. It’s just me.” She recognizes my voice and puts her glasses on, but the look of confusion is still there. She can’t recognize my face. It’s the first time this is happening. It makes me take a closer look at her face to see if it’s a vision issue or a recognition issue. It’s a recognition issue and it causes my breath to catch but I can’t let her see that.

My mom has dementia. She will turn 70 years old tomorrow and most of our conversations these days remind me of my time as a nanny. I am mom’s primary care giver. I moved in with my parents in September of 2012. I knew what I was getting into when I moved out here. I knew that there would come days like today. I just wasn’t ready for it to be NOW. I wanted more time with the mom I knew. Not this new mom that I have to think of in terms of a toddler and yet is still my mom. I watch her like I would a 3 year old. She likes to slip the dog the food she doesn’t want to eat (the dog is enjoying this new side of Grandma). She needs to be told to sit fully on the chair, not half on, half off. She holds my hand when ever she walks or takes dad's arm. When she gets an idea set in her mind, there is no derailing it. You can’t simply put the plate of food in front of her and assume she knows what to do. I often find myself watching her to make sure she doesn’t take too big of a bite or that she puts the top back on the soda bottle so it doesn’t spill. In the car, she sits up front with me so I can have her within arm’s reach.  I watch her drink at red lights or in parking lots so I can make sure she doesn’t tip the bottle the wrong way and I take the bottle from her and put it the cup holder. I am to the point that I don’t trust her in the car alone anymore because she unlocks the doors and opens the windows without looking to see who is around. I worry someone could hurt her. But I can’t take her in the stores anymore either because too many people freak her out; she gets scared by the carts, and by all the noise. My only option is to do my errands after 6 when dad gets home from work or on the weekends when Dad is home with her.

My past experience as a child care provider helps me think in terms of how to make it easier for her and dad and me. I bought a baby monitor for her so that I can be elsewhere in the house and hear her. It’s really come in handy and puts me at ease so that I don’t have to hover over her. I bought a wipe warmer because she complained that the wipes were making her cold when she cleans up. I cut her food into smaller bites and am learning to only give her half at a time. I keep our days simple and uncluttered. I stick to a schedule because she does best on one. Every day at 11 we eat lunch and watch Maury. Yes you read that right, Maury. She loves it. She and I make fun of all the commercials for the various colleges. We mimic the women that scream at the men, we laugh at the guys who get proved wrong, we giggle over some of the downright stupid things the people say, we enjoy watching the reactions of the audience members and at least once per day she tells the guest to “Shut the hell up you FOOL!”.  It’s not Barney or Sesame Street or Dora, but it is harmless for her to watch. The news confuses her as it moves too fast and by the time she’s comprehended something, the newscasters are on to the next topic. We used to watch Criminal Minds but that started scaring her. She can’t separate the real from the fake. Maury she can handle. And it makes her smile and that’s all I care about.

We keep it simple in terms of clothing too. Mom lives in t-shirts, sweat pants, zip up hoodies and good slippers. She doesn’t look like she’s walking out of a fashion magazine, but she’s comfortable and warm. When we got out people look at her which makes her nervous. I smile at her and ignore them. My temper wants to go off on them and educate them. Instead I smile and go about my day. I can’t let mom see me get upset. It would be too much for her.

Each day is new to her and for me. I never know if today is going to be a day of tears or laughter or sarcasm or anger- or a mix of it all. When she cries I hug her and comfort her as best as I can. When she is laughing, I laugh with her. If she is sarcastic, I go with it. Some days she can even handle me sassing her back. But when she’s angry, I stay out of her way. She can get downright mean on her angry days. I have learnt to walk away instead of standing there taking her cruel barbs. I am learning to let them bounce off of me instead of letting them go straight to my heart. When she calms down, I go back to her. I am never far away from her as my office is across the hall from her bedroom which is where she is most comfortable.

I do get frustrated with her and want to scream some days, but I know it’s not going to make it any better. I take a deep breath, play a few rounds of Candy Crush and move on. I watched my dad this weekend deal with his own frustration over the changes. He had his first experience with a soda spilling all over her and the floor mat in my van. He learned the hard way you can’t just give her the bottle and trust that she won’t spill it. I wanted to say just the right thing to him about it, but found myself stumbling over the words. I know it’s hard and it’s different. What I cannot imagine is how it must feel to watch your wife of 46 years change in front of your eyes to a woman that is no longer the one you married but yet still love. My heart hurts for him and I have no way to make it better. All I can do is let him know that I love him and that we will get through this together.

Dementia is a cruel, vicious disease. It robs the affected person of their filter, their memories, and their dreams. It changes families forever, it reverses the family roles, it changes the dynamic of the family. I am blessed to be able to be here to help my dad and care for my mom. I am blessed to be still making memories with her. I will forever hear her voice in my head every time I watch Maury. I will be able to reminisce with my dad in the years to come over the many things we are going through now, to remember the silly stuff and let go of the frustrations. I may not lead the life you would choose, but there is NOWHERE else I would choose to be at this time in my life. I will forever be changed because of this journey we are on as a family. And that’s okay; it’s making me a better daughter, sister, friend, woman and human being.