The Absoluteness of Alzheimer's

Grandma and Lionel ate Burger King kids meals tonight. They bought Lucy the Jack Russell Terrier one too.

"I don't cook anymore because Lionel can't chew!" Grandma explains to me.

"I thought he just got new teeth, Grandma?"

"Yeahhh, but they hurt. They don't fit him right."

She had already changed the subject three times. Grandma didn't want to talk about the elephant in the room.

I don't even particularly want to write about it.

"What did Lionel's son say, Grandma?"

A pause, then my grandmother's familiar shielded acknowledgement and dismissal of my question due to Lionel's close proximity to her.

"Mom said he wants to put Lionel in a home?" I ask quietly.

I hear Lionel's booming voice in the background, asking for mock help as Lucy tongue whips his face.

"Hold on a second," my grandma says as I hear her small footsteps walk towards the bedroom.

She gets really quiet. "They want to put him in Walden Oaks. We went over there today to take a look, " her voice quavers a bit, "but I don't think he's ready. It's not time yet!"

My grandmother rarely cries. She comes from a generation where you don't "burden" others with your emotions. You stay strong. Always. Maybe it is the pain she is experiencing with a recent bout of Shingles that is making her break down? Or maybe it's her fear that once Lionel leaves the house she will be all alone? Or maybe, despite all the yelling and screaming at him, despite all the years of frustration, she simply will miss Lionel the person once he is gone.

"Grandma, but you yell at him all of the time because he's not able to help you. He's sick. It's not a good situation. Won't this be better?"

She has already regained her composure and changed the subject.

"Let's talk about you. Why are you feeling so anxious?"

Why am I feeling so anxious? This is a question that I've be asking myself a lot lately. Though my anxiety has manifested into a concern for my safety due to living in the more "rugged" part of Austin, I can't help but feel that it's been compounded by my family's new found realities that I'm having difficulty accepting- Lionel is sick. His Alzheimer's will only get worst. Lionel will be put into assisted living. Grandma will have to adjust to this. Grandma is 84. Though she is in good health for the most part, Mom fears she can't live alone. Maybe she will move into my Mom's house across the street. Maybe the time has come when the child parents the parent. My Mom is 60. She is bored. She is tired of the small town she was raised and stay in. My mom and grandmother should leave and come here, but I'm not sure they ever will. I am 1,721 miles away and I'm physically unable to help with any of this. All I can be is emotional support over the phone and sometimes that is difficult for me.We expect our parents to be the rock- but my mom is scared of what the future holds and my grandma is scared of what the future holds and I guess I should be too?

But when I was talking to Grandma, I didn't want to talk about my anxiety- though it had consumed a part of me yesterday. I wanted to change the subject.

"Grandma, I want you to know that you can talk to me about this at any time. I don't want you to keep it bottled up. I want you to feel free to share how you feel, ok?"

I worry about her. Because of her idea that you must keep things in, because of her idea that if you are feeling sad or are in pain and shouldn't talk about it, she has been miserable. She's frustrated. She hates herself, she says.

"I can't move like I used to and Lionel is of no help! If I wasn't in pain it would be ok, but I don't think the pain is ever going away!"

She yells at Lionel when he forgets to take out the trash. She yells at Lionel when he falls asleep again and again on the couch. She yells at Lionel when he hits the wrong buttons on the coffeemaker.

"Grandma, you have to stop doing this. He's sick. He forgets. He can't help it. Yelling at him will do both of you no good."

And it won't. Alzheimer's support groups will tell you that trying to combat with a person afflicted with the disease will not work. It will make them angry and sad and more confused. It will only make the opposer more and more frustrated.  It is not like Grandma to yell at someone but like anyone in pain- emotional or physical- you are not always yourself.

Neither Lionel or Grandma are the selves they were 50 years ago or 25 years ago or even 2 years ago. Last year there was no diagnosis to the evident memory loss that Lionel was experiencing. Now, now things are changing so quickly and none of us can hold on.

Lionel Won't Stop Buying Ice Cream

Grandma doing her most favorite thing in the world- slapping Lionel

Grandma: I now have what you call "muffins".

Me: What?

Grandma: My stomach is blubbery and turned into muffins.

Me: Do you mean a "muffin top"? You have a muffin top?

Grandma: Yes, I have muffins.

I speak to my grandmother almost every day and typically an exchange like the one above happens every time I talk to her. Our conversations are never boring. My favorite is when she asked me how my "blah" was doing. You know, that thing I'm writing this post on right now? I'm extremely close to my grandmother and the past few months have been challenging for all of us. She broke her back in multiple places and refused to take painkillers and her live-in boyfriend of twelve years, Lionel, is in the beginning stages of Alzheimer's. The excruciating pain mixed with Grandma's belief that Lionel is acting forgetful to spite her made her a raging bitch for awhile. Now the pain has subsided and she can walk vertically, but Lionel's Alzheimer's is not getting better. I guess we all secretly think it will stop or regress and we're constantly surprised when it gets a little worse.

Lionel won't stop buying ice cream.

Grandma will send him to the grocery store one mile away to pick up milk or broccoli and he'll come back three hours later with three gallons of ice cream and nothing else.

"I can't fit anything else in my freezer!" my grandma explains to me. "It's full of ice cream!"

Recently, Grandma sent Lionel to the store to buy potatoes and he came back with a pumpkin pie. Sweets make Lionel happy and he eats them all of the time. He also sleeps all of the time. Needless to say Lionel is getting F-A-T.

I asked Grandma if Lionel is depressed and she says that when she asks Lionel if he's depressed, he says "no". However, the doctors say he'll get depressed. And he'll get frustrated. And he'll get angry. And he'll get confused.

And all of those things have happened.

"You should have heard him swearing at me earlier today!" my grandmother tells me. "He sounded like a sailor! You sounded like a sailor, Lionel!"

I hear the familiar baritone of Lionel's laughter in the background.

When I talk to Lionel on the phone he seems happy. Truthfully, he sounds 100% normal. The only way I know something is wrong is when my grandmother tells me he drives across the street, parks his car in the church parking lot and falls asleep on a near daily basis. Or when he goes to the dry cleaners around the corner and comes back at 6:30PM at night. Or when the doctors tell my grandmother it's only going to get worse and there will come a point where she can't take care of him anymore.

Yesterday, my mother told me that Lionel's five sons are talking about putting him in a home. The oldest and wealthiest son wants to put Lionel in a home close to him in Vermont- where our fear is that few will come to visit Lionel. Lionel's two adopted sons want to put him in a home in central New York which is close to everyone (two sons in Vermont, one son in Boston, one in Syracuse, one in New Jersey and my family in central New York). The adopted sons don't even want to put him in a home, but they understand that the time to do so is getting closer. I don't think any of us have come to terms with the idea yet. Yes, Lionel was a huge pain in the ass before he got ill and yes, my family (Grandma included) never really liked Lionel, but we grew to love him. Though life without Lionel will be easier, it will not be as full...and I'm dreading the day he won't recognize any of us.

If you want to get to know Grandma and Lionel, watch a video I made about them here.

Have you had personal experiences with Alzheimer's?